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Jan 26, 2017 - ...

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Table of Contents

2017 ANNUAL RESOURCE GUIDE INTRODUCTION 4 Publisher’s Message 2017 New Beginnings By Len Harac, PhD, Publisher

32 Finding the Right New Team By Allen Friedland, MD, FACP, FAAP

6 Ancora Imparo Face to Face By Rick Rader, MD, EP Editor-In-Chief

THE 2017 ANNUAL RESOURCE GUIDE DIRECTORIES 8 National Resources for Specific Disabilities An alphabetized directory of specific disabilities and the disability-specific organizations and associations in the United States and Canada. 34 Adaptive Recreation Organizations A directory of national organizations offering adaptive sports and recreational activities to individuals with special needs and disabilities. 36 Alliance for Technology Access (ATA) A directory of nationwide centers that help children and adults with disabilities gain access to adaptive technology and that provide hands-on consultations, demonstrate products, make recommendations and referrals. and present workshops on technology use. 38 Matching Resources A directory of “Matching Resources”– both national and international – that can help parents who have children with extremely rare conditions or unique combinations of disabilities. 39 Family to Family Resources Family-to-Family Health Information centers (F2F HICs) are non-profit organizations that help families of children and youth with special health care needs (CYSHC) and the professionals who serve them. 42 State Assistive Technology Programs A directory, provided by the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), of programs funded by the National Institute on Disability and Rehabilitation Research that enable individuals with disabilities to gain access to assistive technology devices. 45 Federation of Families for Children’s Mental Health A directory of contacts for state organizations, chapters, and representatives of The Federation of Families for Children’s Mental Health, which serves to provide and sustain leadership for a broad and deep nationwide network of family-run organizations. 50 State Protection and Advocacy Agencies (P&As) and the National Association of Protection and Advocacy Services (NAPAS) A directory of State Protection and Advocacy Agencies (P&As) found nationwide and in each U.S. territory that provide legally-based advocacy services to people with special needs by way of the National Association of Protection and Advocacy Services (NAPAS). 54 University Affiliated Programs A directory of university affiliated programs that provide direct clinical, educational, and other services to individuals with developmental disabilities and their families, helping them find appropriate services.

58 Parent Training & Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) A state-by-state directory of centers that provide training and information to families and professionals to help them deal more effectively in meeting the educational needs of children with disabilities. 62 National Information and Advocacy Resources A listing of national organizations that provide information and advocacy resources for families and professionals. 66 Early Intervention Programs A state-by-state and territories directory of early intervention, toddler programs, and preschool special education resources for children with disabilities that is outlined through the Individuals with Disabilities Education Act (lDEA). 72 Federal and Federally Funded Information Resources A directory of clearinghouses, information centers, and institutes that focus on specific topics by providing free materials, with some also providing referrals to local resources. 74 State Offices of Special Education A directory that provides contact information for each state’s education agency that is responsible for supervising special education services. 76 Vocational Rehabilitation Programs A state-by-state directory of vocational rehabilitation programs. 78 Parent to Parent Programs A directory of programs that offer information and emotional support to parents who have a child or family member with special needs by matching families with a trained “veteran” parent. 79 American with Disabilities Act Programs - Disability Business Technical Assistance Centers A directory of the 10 regional Disability Business Technical Assistance centers that provide information, technical assistance, and training on meeting the Americans with Disabilities Act standards in a business, public area, or school. 80 Title V Programs A state-by-state listing of Title V programs that provide health-related services to children with special healthcare needs and access to other services such as parent support and information.

THE 2016 ANNUAL RESOURCE GUIDE MILITARY DIRECTORIES 83 Exceptional Family Member Program Managers A directory of Exceptional Family Member Program (EFMP) managers for the United States Army (83), Marine Corps (85), Navy (86), Air Force (90), and Coast Guard (88), U.S. Army Reserves and National Guard (92). 96 School Liaison Officers The mission of the School Liaison Officer is to provide military commanders with the support necessary to coordinate and advise military parents of school-aged children on educational issues and needs and to assist in solving education-related problems. 100 Soldier and Family Assistance Centers (SFACs) The United States Department of the Army established Soldier and Family Assistance Centers to provide a central location for wounded soldiers and their families to receive the comprehensive and varied services they need as they recover from their injuries and their families adapt to these changes in their lives.

100 Fisher Houses A Fisher House™ Is “a home away from home” for families of patients receiving medical care at major military and VA medical centers. 102 The United States Department of Veterans Affairs A directory of United States Department of Veterans Affairs (VA) resources. 105 Family Organizations A listing of organizations that might be of interest to military families with members with disabilities. 106

PRODUCTS & SERVICES

eparent.com | EP MAGAZINE • January 2017 1

BEHA AVIOR VIOR CASE STUDIES IN APPLIED BEHAVIOR ANAL LYSIS FOR STUDENTS AND ADULTS ADUL LTS TS ANALYSIS WITH DISABILITIES Keith Stor rey Storey Haymes ey & Linda Ha ymes By Keith 2016,, 344 pp pp.. (8.5 x 11),, 29 il.,, 4 tables. table $53.95 (paper),, $53.95 (ebook)

COMING SOON!

Y OUTH GANGS GANGS (4th Ed.) YOUTH By R obert J. Franzese, Frranzese, Herbert Covey & Robert Herbert C. C . Covey Scott Menar rd d Menard table.. pp. (7 x 10),, 6 il.,, 1 table 2016,, 380 pp. $63.95 (paper),, $63.95 (ebook)

Parental e Alienation Parental By Demosthenes Lor randos, andos, William Bernet Lorandos, S. Richard Richarrd Sauber & S. 2013,, 550 pp. (7 x 10),, 2 il. $89.95 (hard),, $89.95 (ebook)

SUPPORTS POSITIVE BEHAVIOR BEHA AVIOR VIOR SUPPOR TS IN CL ASSROOMS AND SCHOOL S CLASSROOMS SCHOOLS hal P ost Keith Storey rey Michal Post By K eith Stor ey & Mic 2012,, 266 pp. (7 x 10),, 13 il.,, 46 tables. $59.95 (hard),, $39.95 (paper),, $39.95 (ebook)

INTEGRATED INTEGRA ATED HEALTH HEAL LTH CARE FOR PEOPLE WITH A UTISM SPECTRUM SPECTRUM DISORDER AUTISM By Ellen Giar Giarelli relli elli & Kathleen Kathleen Fisher Fis 2016,, 420 pp tables pp.. (7 x 10),, 19 il.,, 14 tables. $65.95 (paper),, $65.95 (ebook)

THE HANDBOOK OF CHILD LIFE Richard By Ric harrd H. Thompson Thompson 2009,, 378 pp. (7 x 10),, 5 il.,, 15 tables. $59.95 (paper),, $59.95 (ebook)

BEHA BEHAVIORAL AVIORAL GUIDE T TO O PERSONALITY PERSONALITY DISORDERS (DSM-5) By Douglas H. H. Ruben Ruben 2015,, 272 pp pp. (7 x 10),, 31 il.,, 1 table table. $42.95 (paper),, $42.95 (ebook)

RESEARCH IN REHABILIT REHABILITATION TA ATIO TI N C OUNSELING (2nd Ed.) COUNSELING By James L. Bellini & Phillip D D.. Rumrill, Jr Jr. r.. 2009,, 320 pp. (7 x 10),, 3 il.,, 5 tables. $49.95 (paper),, $49.95 (ebook)

YOUR ADD/ SOL SOLVING LVING THE PUZZLE OF YOUR ADHD CHILD By Laur Laura ra J. Stev Stevens ens 2015,, 266 pp. (7 x 10),, 7 il.,, 13 tables. $35.95 (spiral),, $35.95 (ebook)

PRINCIPLES AND PRA PRACTICES CTICES OF CASE MAN MANAGEMENT AGEMENT IN REHABILITATION REHABILIT TA T ATION COUNSELING C OUNSELING (2nd Ed.) By E. Da Davis vis Martin, Martin, Jr. Jrr.. 2007,, 380 pp. (7 x 10),, 7 il.,, 2 tables. $54.95 (paper),, $54.95 (ebook)

MUL MULTICULTURAL LTICUL LTURAL ASPECTS OF HUMAN BEHAVIOR (3rd BEHA AVIOR (3r d Ed.) By Willie V. V. Br Bryan yan 2014,, 278 pp. (7 x 10) $45.95 (paper),, $45.95 (ebook)

SELF-ESTEEM AND ADJUSTING WITH (3rd BLINDNESS (3r d Ed.) By Dean W W.. T Tuttle uttle & Naomi R. Tuttle Tuttle 2004,, 328 pp. (7 x 10),, 13 il. $54.95 (paper),, $54.95 (ebook)

THE THINKING SKILLS SKILLS WORKBOOK (4th Ed.) Mary Languirand Ruggeri By Mar y Languir and & Lynn a Lynn Tondat Tondat o Rug ggeri geri 2014,, 288 pp. (8.5 x 11),, 121 il. $48.95 (spiral),, $48.95 (ebook)

CHILD LIFE IN HOSPIT HOSPITALS TAL ALS Richard Stanford By Ric harrd H. Thompson Thompson & Gene e Stanfor rd d 1981,, 284 pp. (6 x 9),, 1 table. $45.95 (paper),, $45.95 (ebook)

FATHERHOOD F ATHERHOOD IN AMERICA By Car Carll Mazza & Armon R. P Perry erry 2016, 340 pp 2016, 10), 1 il., il , 7 tables. t bl pp.. (7 x 10),

CHILDREN IN THE URB URBAN (3rd rd Ed.) AN ENVIRONMENT ENVIRONMENT (3r By Norma K Kolko olko Phillips & Shulamith Lala Ashenber rg g Straussner Strraussner aussner Ashenberg 2016,, 330 pp 7 x 10),, 1 il. pp.. (7

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Information and Support for the Special Needs Community

VOLUME 47 ISSUE 1 Editor-In-Chief Contributing Writer/Editor Publisher Production, Ad Traffic Manager Human Resources Manager Director of Circulation & Business Development Art Direction & Design Resource Guide Specialist Information Technology Expert



ESTABLISHED 1971 Rick Rader, MD Vanessa B. Ira Len Harac Stefanie Valenzano Lois Keegan Hamilton Maher FoxPrint Dennis Dusevic Ron Peterson

Exceptional Parent magazine was founded in 1971 by Maxwell J. Schleifer, PhD Subscriber Services Exceptional Parent 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012

Customer Service/New Orders Email: [email protected] or toll free: 800-372-7368 ext. 234

Publishing & Editorial Office 1360 Clifton Avenue, Ste. 327 Clifton, NJ 07012

Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by TCA EP World, LLC, dba Exceptional Parent Magazine, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 Internet address: http://www.eparent.com. All rights reserved. Copyright ©2017 by TCA EP World, LLC. Exceptional Parent™ is a registered trademark of TCA EP World, LLC Postmaster: Please send address changes to: Exceptional Parent, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription rate is $19.95 per year for EP Digital. Annual subscription rate for Canada is also $19.95 (U.S. funds only); all other foreign countries $24.95 (U.S. funds only). Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 08758. Customer Service/New Orders: E-mail: [email protected] or call toll free: (800) 372-7368 extension 119. Exceptional Parent. Back issues incur a charge of $10.00 each and depend upon availability, call (800) 372-7368. Agreement # 1420542

EP EDITORIAL ADVISORY BOARD Lauren Agoratus Parent, NJ state and MCH Region II (NJ, NY, PR, VI) Coordinator for Family Voices, NJ CCAN (Caregiver Community Action Network), National Family Caregivers Association, Mercerville, NJ

Saadi Ghatan, MD Assistant Prof. of Neurological Surgery, Division of Pediatric Neurological Surgery, Columbia College of Physicians and Surgeons, Columbia Medical School, New York, NY

Gary Liguori Fellow of the American College of Sports Medicine (ACSM); Department Head of Health and Human Performance, University of Tennessee Chattanooga, Chattanooga, TN

Mark L. Batshaw, MD Prof. and Chairman, Dept. of Pediatrics, The George Washington Univ. Medical Center, Washington, DC

Joan Earle Hahn, DNSc, RN, CS, CDDN Assistant Adjunct Prof., Univ. of California, Los Angeles School of Nursing; Past President, Developmental Disabilities Nurses Association

Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY

Mahlon Delong, MD Chair, Dept. of Neurology, Emory Univ., Atlanta, GA

Jerry Hulick, GA Emeritus Massachusetts Mutual Life insurance Company, Special Care Planning Mary M. Keller, ED.D President and CEO, Military Child Education Coalition, Harker Heights, TX Bernard A. Krooks, ESQ Littman Krooks LLP, New York, NY

Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA

Frank J. Murphy President and CEO, EP Foundation for Education, Atlanta, GA

Jo Waldron President and Co-founder of the Able Kids Foundation and Partner at Brain Basket, LLC, Fort Collins, CO

Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA John M. Pellock, MD Prof. and Chair, Division of Child Neurology, Virginia Commonwealth Univ., Vice President of the American Epilepsy Society (AES)

Steven M. Wolf, MD Director of Pediatric Epilepsy at Beth Israel Medical Center, New York, NY; Director of Pediatric Neurology at St. Luke’s Roosevelt Hospital Center, New York, NY

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EP magazine neither endorses nor guarantees any of the products or services advertised in the magazine. We strongly recommend that readers thoroughly investigate the companies and products being considered for purchase, and, where appropriate, we encourage them to consult a physician or other credentialed health professional before use and purchase.

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Note from the Editor-in-chief: TCA EP World, LLC advocates for the dignity of all citizens with disabilities including the use of “people first language” where possible. We do not normally edit articles and submissions that do not reflect this language, therefore, at times, readers might see alternative nomenclature. — Rick Rader, MD

Barbara Mintz MS, RD Vice President of Healthy Living & Community Engagement, Barnabas Health, West Orange, NJ

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Stephen L. DeFelice, MD Founder and Chairman of the Foundation for Innovation in Medicine (FIM)

David Hirsch, MD Medical Director at UnitedHealthcare

Esther Schleifer, MSW Clinical Social Worker, Boston, MA

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Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children’s Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego

Matthew Holder, MD President of the American Academy of Developmental Medicine & Dentistry; Global Medical Advisor for Special Olympics International, Louisville, KY

Robert K. Ross Ed.D., BCBA-D, LBA President of the Autism Special Interest Group, Association for Behavior Analysis International, Senior VP at Beacon ABA Services of MA & CT

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Ronald G. Blankenbaker, MD Univ. of Tennessee Health Science Center, Chattanooga, TN; President, American Association on Health and Disability

Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Prof., Boston University, School of Dentistry, Boston, MA

www.eparent.com/EP MAGAZINE • January 2017 3

PUBLISHER’S MESSAGE

LEN HARAC, PHD

New Beginnings EP Magazine’s aim is to reach the widest possible audience with our award-winning content – so please help us spread the word.

As we enter our 46th year of continued publication, I would like to take this opportunity to thank each one of you for your continued support of EP Magazine (Exceptional Parent), as well as for your advocacy and contributions to the special needs community. As EP’s new Publisher, I can assure that you will continue to receive only the best information to help your family have a better quality of life, and stories that will uplift and empower your loved ones. We will expand our efforts to reach out to more associations, professional organizations and advocacy groups through regular email and web-based outreach.

4 January 2017 • EP MAGAZINE | eparent.com

One of the biggest moves we’ve made in the last couple months, which will continue in the coming year, is open up EP Magazine for everyone with access to an electronic device. Our aim is to reach the widest possible audience with our awardwinning content—so please help us spread the word. We will also invite new contributing writers and associations to keep our editorial robust and relevant while maintaining EP’s popular columns like Rick Rader, MD’s Editor’s Desk, the AADMD, Puzzles & Camo, etc. In addition, we are planning to produce some printed copies and distribute them to pediatrician’s offices. It is our plan to reach thousands

more readers in early 2017 and greatly expand our circulation as the year unfolds. I am looking forward to working with you and making wonderful things happen for our families, caregivers, allied healthcare professionals and educators in the field— and, of course, all the men and women of our country’s brave and beloved Military. A happy, healthy and blessed 2017 to you! – Sincerely, Len Harac, PhD Publisher, EP Magazine •

NATIONAL ASSOCIATION OF PRIV VATE SPECIAL EDUCA ATION CENTERS

For more inffoormation on NAPSEC, membership services and our ffrree refferral service ffoor families who are searching ffoor an appropriate privaate specialized placement, please visit our website at www.napsec.org! 1FOOTZMMWBOJB"WFOVF /8t4VJUF4PVUI#VJMEJOH Washington, DC 20004

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ANCORA IMPARO

RICK RADER, MD



EDITOR-IN-CHIEF

Face to Face The secret to the joys and rewards of supporting individuals with special needs is best shared by Dejan Stojanovic: “For a moment at least, be a smile on someone else’s face.”

When I was in college I always had two well-worn, dog-eared books close by. One was the Workshop Manual for my 1953 MG roadster which seemed to always announce that its most current ailment could be found somewhere in the 268 oil soiled pages. Finding it and fixing it were two different things. The other book was a 1940 first edition copy of Farewell, My Lovely by Raymond Chandler. Chandler was a British-American novelist and screenwriter who wrote detective stories featuring the Los Angeles private eye Philip Marlowe. I wasn’t necessarily a fan of what they called his style, “hardboiled, noir fiction,” but I kept the book because of one sentence. Marlowe is investigating a dead-end, missing person case and is in hot pursuit of

FACE VALUE: (Above, from left to right) Velma Valento as portrayed by Claire Trevor in the 1944 film; Helen of Troy by Evelyn de Morgan; da Vinci’s Mona Lisa, and a Gerber baby food ad circa 1947. 6 January 2017 • EP MAGAZINE | eparent.com

Moose Malloy, a wanted felon. The gumshoe’s pursuit leads him to Malloy’s ex-girlfriend Velma Valento. Chandler describes Marlowe’s take on seeing Velma for the first time. “A blonde to make a bishop kick a hole in a stained glass window.” I remember reading that line hundreds of times over. It clearly described a face that could probably never be forgotten. I wanted to find Velma or a version of her. I never found her, but I did keep that MG for 30 years. It’s amazing how compelling we find some faces to be. It’s certainly not a new phenomenon drummed up by Hollywood or Madison Avenue. Another killer line that described an unforgettable face came from the English playwright and drinking buddy of Shakespeare, Christopher Marlowe. The line comes from his play The Tragic History of Dr. Faustus and accounts for one of the most famous lines in English literature,

“The face that launched a thousand ships.” The line describes Helen of Troy who, according to Homer’s The Iliad, was the wife of the king of Sparta. She was so beautiful that the Greek army went to Troy and fought the Trojan War to win her back from her lover Paris. Of course Helen’s face didn’t really launch any ships; the structure of the sentence is known as a metalepsis; a “stylish flourish that skips from X to Z, bypassing Y.” But from the depth of that sentence she might have given Velma a run for her money. Next on the hit parade of “mega-faces” is that belonging to an Italian girl named Lisa. Her husband Francesco commissioned a painting of her to display in their new home. Apparently the artist did a bang up job and captured her essence. Philip Cohen, writing in the journal The New Scientist describes just how effectively the artist raised the bar. “The subject’s expression, which is

IMAGES (L TO R) COURTESY PULP INTERNATIONAL; DE MORGAN FOUNDATION; WIKIPEDIA AND PZRSERVICES

frequently described as enigmatic, the monumentality of the composition, the subtle modelling of forms, and the atmospheric illusionism were novel qualities that have contributed to the continuing fascination and study of the work.” Apparently the painting exceeded Francesco’s expectations. It has been described as “the best known, the most visited, the most written about, the most sung about, the most parodied work of art in the world.” The painting of Lisa Gherardini is better known as the Mona Lisa and, to this day, how the artist Leonardo Da Vinci pulled it off without leaving any impression of visible brushstrokes still challenges art historians and scientists alike. Mehmet Murat Ildan, the Turkish playwright offers, “To have a meaningful look on your face, you need to have meaningful emotions deep inside you!” I’m not sure that in 1928, when the face of Ann Turner Cook was selected to launch a brand of baby food (not a thousand ships) that they were looking for a face that had “meaningful emotions deep inside.” They wanted a lovable, bright-eyed cherub of a baby; and they got one. At the suggestion of their pediatrician, Dorothy Gerber began making hand-strained food for their seven-month-old daughter Sally. Dorothy’s husband, Daniel Gerber, saw a promising business opportunity. Gerber Products became a major international company with more than 190 products in 80 countries, with labeling in 16 languages. Gerber is a major player controlling over 80 percent of the baby food market in the United States. Early on, Gerber held a contest to find a baby’s face to be the central figure in their marketing campaign. One of the submissions was a simple unfinished charcoal sketch of a neighbor’s baby. The artist, Dorothy Hope Smith, told Gerber that she would finish the drawing if she won. Despite competing with elaborate oil paintings the sketch was selected as the winning entry; with the insistence that Gerber would use the sketch

as it was submitted and not completed. The Gerber baby became one of the most recognizable faces in the world; yet the identity of the baby was kept secret for 40 years. In late November of this year Ann Taylor Cook, aka “The Gerber Baby,” turned 90 years old. She still has a face that puts her in the running with Velma, Helen and Lisa. When I leave my office at the Orange Grove Center and walk down the halls I see lots of faces. Faces that may not compel you to launch a fleet, kick a hole in a stained glass window, or stock up on pureed prunes. But they are compelling, inviting and unforgettable. They are those things because the individuals are those things. Karl Lagerfeld, one of the world leaders in design and beauty, recently shared the secret about modeling. “The secret to modeling is not being perfect. What one needs is a face that people can identify in a second. You have to be given what’s needed by nature, and what’s needed is to bring something new.” The faces at Orange Grove are new. Day in and day out they offer all of us something new. Something new that we can discover in ourselves and hopefully provide to someone else. The secret to the joys and rewards of supporting individuals with special needs is best shared by Dejan Stojanovic: “For a moment at least, be a smile on someone else’s face.” Exceptional Parents have known that secret forever. •

“The faces – and the people – at the Orange Grove Center are compelling, inviting and unforgettable.”

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ANCORA IMPARO In his 87th year, the artist Michelangelo (1475 -1564) is believed to have said “Ancora imparo” (I am still learning). Hence, the name for my monthly observations and comments. — Rick Rader, MD, Editor-in-Chief, EP Magazine Director, Morton J. Kent Habilitation Center Orange Grove Center, Chattanooga, TN

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eparent.com | EP MAGAZINE • January 2017 7

National Resources for Specific Disabilities

THIS DIRECTORY INCLUDES NATIONAL GROUPS and organizations that can serve as resources for parents and professionals seeking information and support about specific disabilities and conditions. Please note that information on some specific disabilities may also be available from Federal and Federally-Funded Information Resources (see page 70 for additional listings), Parent to Parent Programs (see page 76), or certain National Information and Advocacy Resources (see page 61). Matching Resources may also be useful (see page 38). CROSS-REFERENCING Categories have been cross-referenced where appropriate. Many conditions are known by more than one name. Readers are directed to “see” other relevant category names where resources are also listed. (Under CHROMOSOME 4P-, for example, readers are referred to WOLF-HIRSCHHORN SYNDROME.) Some specific disabilities are not covered by a specific national organization. These conditions may be cross-referenced to a broader category that includes organizations that can provide helpful resources. (For example, the metabolic condition ARGINASE DEFICIENCY is cross-referenced to UREA CYCLE DISORDERS.) In some cases, the reader may be directed to a similar (but not identical) condition, when groups for that condition have indicated the ability and willingness to provide appropriate information and support. For example, 45,X SYNDROME is cross-referenced to TURNER’s SYNDROME and HYPOPIGMENTATION. In cases where resources are available for both a general category of disability (for example, VISUAL IMPAIRMENT) and specific conditions within that general category (for example, ALBINISM, GLAUCOMA, MACULAR DISEASES, RETINITIS PIGMENTOSA, RETINOBLASTOMA, SEPTO-OPTIC DYSPLASIA, and USHER SYNDROME), crossreferencing goes in two directions. Under VISUAL IMPAIRMENTS, for example, readers are informed of the types of visual impairments for which specific resources exist, and under each specific type of visual impairment, readers are referred to the more general category. In cases where one specific condition usually includes other conditions, but those other conditions do not necessarily include the first condition, cross-referencing goes in one direction only. For example, under LAURENCE-MOON-BARDET-BIEDL SYNDROME (LMBBS), readers are directed to “see also” KIDNEY DISORDERS and RETINITIS PIGMENTOSA, though neither of these conditions refer to LMBBS. This is because LMBBS typically includes kidney complications and retinitis pigmentosa, but a primary diagnosis of either one of these conditions does not typically include LMBBS. USING THIS DIRECTORY A description of services provided by individual groups follows each listing in this directory. Numbers correspond to items listed in the Key to Services, which appears on every other page. Some organizations offer advocacy and materials in other languages in addition to English. These languages are indicated after the list of services provided. When available, email addresses and Web sites have been included. Email addresses are indicated by the symbol . Unless otherwise indicated, all telephone numbers are for voice only. This directory is current as of December 2016.

45, X Syndrome See: Turner’s Syndrome; Albinism and Hypopigmentation

47,XYY; 47,XXY; 47,XXX Syndromes See: Klinefelter Syndrome Abdominal Migraine; Cyclic Vomiting Syndrome; A-BetaLipoproteinemia; Tay-Sachs Disease

Achondroplasia See: Growth Disorders

Acid Maltase Deficiency NEW HAMPSHIRE DEPARTMENT OF EDUCATION Barbara J. Raymond Bureau of Special Education 101 Pleasant Street Concord, NH 03301-3494 (603) 271-3494 (603) 271-3791 (603) 271-1099 (FAX) [email protected] www.education.nh.gov/instruction /special_ed/index.htm

THE CANAVAN RESEARCH FOUNDATION Samantha Karlin, Director 88 Route 37 New Fairfield, CT 06812 (646) 481-6820 (203) 746-3205 (FAX) [email protected] www.canavan.org English

Acidemia, Isovaleric (IVA) See: Acidemia, Organic

Acidemia, Organic Metabolic Disorders ORGANIC ACIDEMIA ASSOCIATION Kathy Stagni 9040 Duluth Street Golden Valley, MN 55427 (763) 559-1797 (866) 539-4060 (FAX) [email protected] www.oaanews.org 1,2,3,4,6,7,8 English

8 January 2017 • EP MAGAZINE | eparent.com

Acidemia, Propionic See: Acidemia, Organic

Acoustic Neuroma ACOUSTIC NEUROMA ASSOCIATION OF CANADA Melanie Sexsmith PO Box PMB #1005 7-B Pleasant Blvd, Toronto, ON M4T1K2 (800) 561-2622 (416) 546-6426 www.anac.ca 1,2,3,5,6 English

Acromegaly See: Pituitary Disorders/Tumors

Adrenocorticotropic Hormone Deficiency See: Pituitary Disorders/Tumors

Adrenoleukodystrophy See: Leukodystrophy Tay-Sachs Disease

Agenesis of the Corpus Callosum ACC NETWORK Kathy Schilmoeller 5766 Shibles Hall Orono, ME 04469 (207) 581-2761 (207) 581-3120 (FAX) 1,2,3,9 NATIONAL ORGANIZATION FOR DISORDERS OF THE CORPUS CALLOSUM (NODCC) PMB 363 18032-C Lemon Drive Yorba Linda, CA 92886 (714) 747-0063 (714) 693-0808 (FAX) [email protected] www.nodcc.org 1,2,3,4,5,6 English

Agyria See: Lissencephaly

Aicardi Syndrome AICARDI SYNDROME NEWSLETTER 1510 Polo Fields Ct Louisville, KY 40245 (502) 244-9152 [email protected] www.Aicardisyndrome.org 1,2,3,4,5,6,8 English only

NATIONAL PEDIATRIC & FAMILY HIV RESOURCE CENTER Estella Ortega 30 Bergen Street - ADMC #4 Newark, NJ 07103 (800) 362-0071 (973) 972-0410 (973) 972-0399 (FAX) [email protected] www.thebody.com 1,2,3,5,7

Alagille Syndrome ALAGILLE SYNDROME ALLIANCE Cindy D Luxhoj, Executive Director 10500 SW Starr Drive Tualatin, OR 97062 (503) 885-0455 [email protected] www.alagille.org 1,2,3,6,7,8,9

Albinism & Hypopigmentation NOAH (NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION) Lori Aubrey PO Box 959 E.Hampstead, NH 03826-0959 (800) 473-2310 (603) 887-2310 (800) 648-2310 (FAX) [email protected] www.albinism.org 1,2,3,4,5,6,7,9 English, Spanish materials only (Not spoken)

Albright Syndrome See: Growth Disorders

Algoneurodystrophy See: Reflex Sympathetic Dystrophy Syndrome

AIDS

Allergy

NATIONAL CENTER FOR HIV/AIDS, VIRAL HEPATITIS, STD AND TB PREVENTION 1600 Clifton Road, NE Mailstop E-49 Atlanta, GA 30329-4027 (800) CDC-INFO (888) 232-6348 (404) 639-7394 (FAX) [email protected] www.cdc.gov/media 2,4 English, Spanish

See: Asthma and Allergy; Food Allergy

Allergy, Food See: Food Allergy

Alopecia Areata NATIONAL ALOPECIA AREATA FOUNDATION Laura Ralph 65 Mitchell Boulevard, Ste 200-B San Rafael, CA 94903 (415) 472-3780 (415) 472-5343 (FAX) [email protected] www.naaf.org 1,2,3,4,6,7,8,9 English, Spanish

Acquired Immune Deficiency Syndrome See: AIDS

Acrocephalosyndactyly, Type I See: Apert Syndrome

Acrofacial Dysostosis, Nager Type See: Nager and Miller Syndromes

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources

5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

Alpha-1-Antitrypsin (AAT) Deficiency

Amsterdam Dwarf Syndrome of de Lange

ALPHA-1 FOUNDATION Bob Campbell 3300 Ponce de Leon Blvd. Coral Gables, FL 33134 (877) 228-7321 (305) 567-1317 (FAX) [email protected] www.alpha1.org 1,2,5,6,7,8,9

See: Cornelia de Lange Syndrome

Alpha-Galactosidase Deficiency

See: Arthrogryposis Multiplex Congenita

See: Fabry Disease

Anal Atresia

Alport Syndrome See: Hearing Impairments; Kidney Diseases

Alstrom Syndrome See: Diabetes Mellitus; Hearing Impairments; Kidney Disorders; Retinitis Pigmentosa; Visual Impairments

Amylo-1, 6-Glucosidase Deficiency See: Glycogen Storage Diseases; Muscular Dystrophy

Amyoplasia, Congenita

See:Anorectal Malformations

Anal Stenosis See:Anorectal Malformations

Andersen Disease See: Glycogen Storage Diseases

Anderson-Fabry Disease See: Fabry Disease

Alternating Hemiplegia See: Hemiplegia, Alternating

Amniotic Bands See: Craniofacial Disorders

Amputation AMPUTEE COALITION 900 East Hill Avenue, Suite 290 Knoxville, TN 37915-2566 (888) 267-5669 (865) 525-7917 (FAX) [email protected] www.amputee-coalition.org 1,2,3,4,6,7 English,Spanish NATIONAL AMPUTATION FOUNDATION Laurie Romano 40 Church Street Malverne, NY 11565 (516) 887-3600 (516) 887-3667 (FAX) [email protected] www.nationalamputation.org 1,2,3,4 English

Anemia, Aplastic APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATION, INC John Huber 100 Park Avenue, Suite 108 Rockville, MD 20850 (800) 747-2820 (301) 279-7202 (301) 279-7205 (FAX) [email protected] www.aamds.org 1,2,3,4,5,6,7,8,9 English, Spanish

Anemia, Aplastic APLASTIC ANEMIA AND MYELODYSPLASIA ASSOCIATION OF CANADA 11181 Yonge St, Suite 321 Richmond Hill, ON L4S 1L2 (905) 780-0698 (888) 840-0039 (905) 780-1648 (FAX) [email protected] www.aamac.ca

Amputation and Congenital Limb Loss

Anemia, Aregenerative

AMPUTEE COALITION Melanie Staten 900 East Hill Avenue, Suite 390 Knoxville, TN 37915 (888) 267-5669 (865) 525-4512 (865) 525-7917 (FAX) www.amputee-coalition.org 1,2,3,4,6,7 Spanish & English materials available

Anemia, Cooley

Amputee

Anemia, Fanconi

AMERICAN AMPUTEE FOUNDATION Catherine J. Walden PO Box 94227 Little Rock, AR 72190-4227 (501) 666-2523 (501) 835-9292 (FAX) [email protected]

FANCONI ANEMIA RESEARCH FUND, INC. Executive Director 1801 Willamette Street, Ste 200 Eugene, OR 97401 (541) 687-4658 (541) 687-0548 (FAX) [email protected] www.fanconi.org 1,2,3,4,8 Tele-interpreters, some materials

See: Anemia, Aplastic See: Cooley Anemia

Anemia, Diamond Blackfan See: Anemia Aplastic; Autoimmune Disorders

Anemia, Erythroblastotic See: Cooley Anemia, Thalassemia Major

in Spanish

Anemia, Hemolytic

Anorectal Malformations, Colon Disease

See: Cooley Anemia/Thalassemia Major

PULL-THRU NETWORK Lori Parker 1705 Wintergreen Parkway Normal, IL 61761 (309) 262-2930 [email protected] www.pullthrunetwork.org/index.php 1,2,3,6,7 E-mail discussion group, weekly member chat

Anemia, Toxic Paralytic

Anorexia Nervosa

See: Cooley Anemia/Thalassemia Major

Anemia, Hypoplastic See: Anemia, Aplastic

Anemia, Target Cell

See: Anemia, Aplastic

Angelman Syndrome ANGELMAN SYNDROME FOUNDATION Sheila Wenger 75 Executive Drive, Suite 327 Aurora, IL 60504 (800) 432-6435 (630) 978-4245 (630) 978-7408 (FAX) [email protected] www.angelman.org 1,2,3,4,6,7,8 CANADIAN ANGELMAN SYNDROME SOCIETY Trevor Janzen, President PO Box 37 Priddis, AB T0L 1WO [email protected] www.angelmancanada.org 1,2,3,4,5,6,8

Angiokeratoma Coporis Diffusum See: Fabry Disease

Angiomatosis Retina See: Von Hippel-Lindau Syndrome

Aniridia, WAGR, Gillespie Syndrome ANIRIDIA NETWORK INTERNATIONAL Hannah James 109 Gavin Way Colchester, UK CO4 9FR 440-120-6842742 2,3,4 English

Ankylosing Spondylitis, Juvenile See: Arthritis

Anophthalmia, Microphthalmia, Coloboma INTERNATIONAL CHILDREN’S ANOPHTHALMIA NETWORK Tanya Bardakjian Genetics, Levy 2 West 5501 Old York Rd Philadelphia, PA 19141 (800) 580-ICAN (215) 456-2356 (FAX) [email protected] www.anophthalmia.org 1,2 English, Spanish

NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS Includes bulimia nervosa and binge-eating disorder Laura Discipio PO Box 640 Naperville, IL 60566 (630) 577-1330 [email protected] www.anad.org 1,2,4,5,6,7 NATIONAL EATING DISORDERS ASSOCIATION Claire Mysko 165 West 46th Street, Suite 402 New York, NY 10036 (212) 575-6200 (800) 931-2237 (212) 575-1650 (FAX) [email protected] www.nationaleatingdisorders.org 2,4,6,7

Apnea, Sleep AMERICAN SLEEP APNEA ASSOCIATION Tracy R. Nasca, Executive Director 1717 Pennsylvania Avenue NW Suite 1025 Washington, DC 20006 (888) 293-3650 (331) 234-0091 (888) 293-3650 (FAX) [email protected] www.sleepapnea.org 7 English

Apraxia, Autism C.H.E.R.A.B. FOUNDATION, INC Research, Apraxia Base Foundation Lisa Geng PO Box 8524. Communication Help, Education, Research, Apraxia Base Port St. Lucy, FL 34952-8524 (772) 335-5135 (866) 486 6445 (FAX) [email protected] www.cherab.org 3,4,5,6,7 English

Aqueductal Stenosis See: Hydrocephalus

Arachnodactyly See: Marfan Syndrome

Apert Syndrome

Aregenerative Anemia

APERT INTERNATIONAL, INC. Cathie Sears c/o Don & Cathie Sears PO Box 2571 Columbia, SC 29202 (803) 732-2372 [email protected] www.apert.org 2,3,6,7 Listserv support

See: Anemia, Aplastic

Apert Syndrome

Arginase Deficiency See: Urea Cycle Disorders

Argininosuccinase Deficiency See: Urea Cycle Disorders

Argininosuccinic Acid Synthetase Deficiency

TEETER’S PAGE P.O Box 2571 Columbia, SC 29202 (803) 732-2372 [email protected] www.apert.org

See: Urea Cycle Disorders

Aphasia, Acquired

See: Alagille Syndrome

NATIONAL APHASIA ASSOCIATION P.O.Box 87 Scarsdale, NY 10583 [email protected] www.aphasia.org 2,3,4,6,9 Chinese, Creole, English, Greek, Hebrew, Italian, Korean,

Arteriovenous Malformations (AVMs)

Aplastic Anemia See: Anemia, Aplastic

Argininosuccinic Aciduria See: Urea Cycle Disorders

Arteriohepatic Dysplasia

See: Epilepsy; Stroke; Vascular Malformations

Arthritis, Rheumatic Diseases, Autoimmune Diseases ARTHRITIS FOUNDATION NEW JERSEY CHAPTER Amy Boright Siperstein, CFRE, Regional Director 555 Route 1 South, Suite #220 Iselin, NJ 8830 (888) 467-3112 (732) 283-4300 (732) 283-4633 (FAX) [email protected] www.arthritis.org 1,2,4,5,6,7,8,9 English, Spanish

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National Resources for Specific Disabilities

ARTHRITIS SOCIETY 393 University Ave., Ste. 1700 Toronto, ON M5G 1E6 (800) 321-1433 (416) 979-8366 [email protected] www.arthritis.ca/ontario English, French NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES INFORMATION CLEARINGHOUSE (NIA) Stephen I. Katz M.D. Ph.D. 1 AMS Circle Bethesda, MD 20892-3675 (877) 22-NIAMS (226-4267) (301) 565-2966 (301) 718-6366 (FAX) [email protected] www.niams.nih.gov 2,8,9 English, Spanish

Arthrochalasis Multiplex Congenita

THE ASTHMA AND ALLERGY FOUNDATION OF AMERICA Helene Taylor 8201 Corporate Drive Landover, MD 20785 (202) 466-7643 or (800) 727-846 (202) 466-8940 (FAX) [email protected] www.aafa.org 1,2,3,4,5,7,8 Materials available in English and Spanish

Ataxia NATIONAL ATAXIA FOUNDATION 2600 Fernbrook Lane, Suite 119 Minneapolis, MN 55447 (763) 553-0020 (763) 553-0167 (FAX) [email protected] www.ataxia.org 1,2,3,5,6,7 English only

See: Ehlers-Danlos Syndrome

Ataxia Telangiectasia

Arthrogryposis Multiplex Congenita

ATAXIA TELANGIECTASIA CHILDREN’S PROJECT Jennifer Thornton 5300 W. Hillsboro Blvd., Ste 105 Coconut Creek, FL 33073 (800) 543-5728 (954) 481-6611 (954) 725-1153 (FAX) [email protected] www.atcp.org 1,2,3,7,8,9 English, Spanish

AVENUES: A NATIONAL SUPPORT GROUP FOR ARTHROGRYPOSIS MULTIPLEX CONGENITA Jim Schmidt PO Box 5192 Sonora, CA 95370 209-928-3688 [email protected] www.avenuesforamc.com 2,3,4,9 English, Spanish

Ascending Paraylsis See: Guillain-Barr Syndrome

Asperger Syndrome See: Autism

Asperger’s Disorder See: Autism

Asthma See: Asthma and Allergy

Asthma & Allergy ALLERGY & ASTHMA NETWORK MOTHERS OF ASTHMATICS 8229 Boone Boulevard, Suite 260 Vienna, VA 22182 (800) 878-4403 (703) 641-9595 (703) 288-5271 (FAX) www.aanma.org 1,2,4,6,7 English, Spanish ASTHMA SOCIETY OF CANADA Vanessa Foran 124 Merton Street, Suite 401 Toronto, ON M4S 2Z2 (866) 787-4050 (416) 787-4050 (416) 787-5807 (FAX) [email protected] www.asthma.ca 1,2,3 English

Ataxia with Lactic Acidosis II See: Ataxia;Mitochondrial Disorders

Ataxia, Familial See: Ataxia;

Ataxia, Friedreich See: Ataxia;

Ataxia, Spinocerebellar See: Ataxia;

Atrial Septal Defects See: Heart Disorders

Attention Deficit Disorder ATTENTION DEFICIT DISORDER ASSOCIATION (ADDA) Evelyn Green PO Box 103 Denver, PA 17517 (800) 939-1019 (800) 939-1019 (FAX) [email protected] www.add.org 1,2,3,6 English ATTENTION DEFICIT DISORDER RESOURCES Megan McDonald 1836 Westlake Ave N, Ste 303 Seattle, WA 98109 (206) 724-0599 (253) 572-3700 (FAX) www.addresources.org 1,2,3,4,5, Some material available in Spanish

10 January 2017 • EP MAGAZINE | eparent.com

ATTENTION DEFICIT DISORDER RESOURCES Cynthia Hammer 1836 Westlake Ave N, Ste 303 Seattle, WA 98109 (206) 724 0599 (253) 572-3700 (FAX) www.addresources.org

Attention-Deficit/ Hyperactivity Disorder CHADD - CHILDREN AND ADULTS WITH ATTENTIONDEFICIT/HYPERACTIVITY DISORDERS 4601 Presidents Drive, Suite 300 Lanham, MD 20706 (301) 306-7070 (800) 233-4050 301) 306-7090 (FAX) www.help4adhd.org 1,2,4,5,6,7 English, Spanish NATIONAL RESOURCE CENTER ON ADHD (CHADD) Tim MacGeorge 4601 Presidents Drive, Suite 300 Landover, MD 20706 (301) 306-7070 (301) 306-7090 (FAX) www.chadd.org 2,4

Attenuated Adenomatous Polyposis Coli See: Colon Cancer, Hereditary

Auditory Neuropathy See: Kernicterus

Autism AUTISM NATIONAL COMMITTEE Anne Bakeman 3 Bedford Green South Burlington, VT 5403 781-648-1813 www.autcom.org 1,2,3,6 English, very little Spanish AUTISM NEW JERSEY Suzanne Buchanan Psy.D. BCBA-D 500 Horizon Drive, Suite 530 Robbinsville, NJ 08691 (609) 588-8200 (800) 4AU-TISM (609) 588-8858 (FAX) [email protected] www.autismnj.org 1,2,4,6,7 English, Spanish AUTISM RESEARCH INSTITUTE Stephen M. Edelson 4182 Adams Ave San Diego, CA 92116 (619) 563-0915 (866) 366-3361 (877) 644-1181 (FAX) 1,2,3,4,6,7,8,9 English, Spanish

AUTISM SPEAKS Autism Response Team 1 East 33rd Street 4th Floor New York, NY 10016 (888) 288-4762 (212) 252-8676 (FAX) [email protected] www.autismspeaks.org 1,2,4,5,6,7,8,9 English, Spanish AUTISM TREATMENT CENTER OF AMERICA: HOME OF THE SON-RISE PROGRAM Bryn N. Hogan 2080 S. Undermountain Rd Sheffield, MA 01257 (877) 766-7473 (413) 229-3202 (FAX) [email protected] www.autismtreatmentcenter.org 1,2, English (some programs offered with Spanish interpretation) KENNEDY KRIEGER INSTITUTE CENTER FOR AUTISM AND RELATED DISORDERS Roger Abounader 707 N. Broadway Baltimore, MD 21205 (800) 873-3377 (443) 923-9200 (443) 923-9405 (FAX) www.kennedykrieger.org 1,2,4,8 NATIONAL AUTISM HOTLINE/AUTISM SERVICES CENTER Ruth Sullivan 929 4th Avenue, Second Floor; Prichard Building, PO Box 507 Huntington, WV 25701 (304) 525-8014 (304) 525-8026 (FAX) [email protected] www.autismservicescenter.org 1,2,6,7 ORGANIZATION FOR AUTISM RESEARCH Wendy McKinnon 2000 N. 14th Street, Suite 240 Arlington, VA 22201 (866) 366-9710 (703) 243-9751 (FAX) [email protected] www.researchautism.org 1,2,6,8 English, Spanish THE AUTISM SOCIETY 4340 East West Highway, Ste 350 Bethesda, MD 20814 (301) 657-0881 (800) 328-8476 (301) 657-0869 (FAX) [email protected] www.autism-society.org 1,2,4,5,6,7,9 English, Spanish by phone and on Web Site

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources

5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9.Maintain research registry

Autism and Sensory Impairments ARI’S DEAF/HOH AND BLIND/VISUALLY IMPAIRED NETWORK Dr.Stephen Edelson Autism Research Institute 4182 Adams Avenue San Diego, CA 92116 (619) 281-7165 (866) 366-3361 (619) 563-6840 (FAX) [email protected] www.autism.com/services_visual hearing 2,3,4,6,9 English AUTISM SPEAKS 1 East 33rd Street 4th Floor New York, NY 10016 (888) 288-4762 (212) 252-8676 (FAX) [email protected] www.autismspeaks.org 1,2,7,5,6,7,8,9 English, Spanish INDIANA RESOURCE CENTER FOR AUTISM (IRCA) AT INDIANA UNIVERSITY BLOONINGTON Dr. Cathy Pratt BCBA-D, Director 1905 North Range Road Bloomington, IN 47408-9801 (812) 855-6508 (812) 855-9396 (812) 855-9630 (FAX) [email protected] www.iidc.indiana.edu/irca 1, 2,3,4,6,7 Written Materials: Spanish, Korean, English MAAP SERVICES FOR AUTISM Susan J. Moreno, M.A., A.B.S. PO Box 524 Crown Point, IN 46307 (800) 494-3174 [email protected] www.aspergersyndrome.org 2,3,4,6,7,9 English, SpanishTEACCH CB# 7180 UNC-Chapel Hill Box 7180 University of North Carolina Chapel Hill, NC 27599-7180 (919) 966-2174 (919) 966-4127 (FAX) [email protected] www.teacch.com YALE CHILD STUDY CENTER Rosa Maccioc/o Evelyn Pomichter 230 South Frontage Rd New Haven, CT 06519 (203) 785-2540 (203) 785-7402 (FAX) [email protected] www.autism.fm 1,2,3,4,6,7,8,9 English

Autoimmune Disorders AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION (AARDA) Virginia Ladd 22100 Gratiot Ave Eastpointe, MI 48021-2227 (586) 776-3900 (586) 776-3903 (FAX) [email protected] www.aarda.org 1,2,7,8,9

BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION, CANADIAN CHAPTER Bev Maxim 17 Bell St. Regina, SK S4S 4B7 (800) 448-4570 (800) 448-4570 (866) 648-8718 (FAX) [email protected] www.bdsra.org 1,2,3,4,5,6,7,8,9 English, Spanish

See: Batten Disease

B12 Metabolism Inborn Error of

BBB Syndrome

BARTH SYNDROME FOUNDATION, INC Lindsay Groff, Executive Director 2005 Palmer Ave., #1033 Larchmont, NY 10538 (914) 303-6323 (518) 213-4061 (FAX) [email protected] www.barthsyndrome.org 1,2,6,8,9 English, Deutsch, Espanol, Francais, Italiano, Nederlands, Portu

Batten Disease BATTEN DISEASE REGISTRY Edie Dockter Institute for Basic Research 1050 Forest Hill Road Staten Island, NY 10314 (718) 494-5201 (800) 952-9628 (718) 982-6346 (FAX) [email protected] 2,4,5,7,8,9 English BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION Margie Frazier 1175 Dublin Road Columbus, OH 43215 (800) 448-4570 (866) 648-8718 (FAX) [email protected] www.bdsra.org 1,2,3,4,5,6,7,8,9 English, French, Spanish

Bloch-Sulzberger Syndrome See: Incontinentia Pigmenti

Bloom Syndrome

SHWACHMAN DIAMOND SYNDROME FOUNDATION PO Box 40 Avon, NY 14414 (888) 825-SDSF [email protected] www.shwachman-diamond.org 1,2,3,4,6,8 English

See: Scleroderma

Barth Syndrome

See: Visual Impairments, Low Vision, Vision Impairment

Bone Marrow Dysfunction

Batten-Spielmeyer-Vogt Disease

See: Sotos Syndrome

See: Cornelia de Lange Syndrome

See: Opitz Syndrome

Autoimmune Rheumatic Diseases

Bannayan, Ruvalcaba, Riley-smith Syndrome

Blindness

BBBG Syndrome

See: Batten Disease

EAR FOUNDATION Susan Wyatt 955 Woodland Street Nashville, TN 37206-3753 (615) 627-2724 (615) 329-7809 (615) 329-7935 (FAX) [email protected] www.earfoundation.org

Brachmann-de Lange Syndrome

See: Opitz Syndrome

Batten-Mayou Syndrome

See: Autoimmune Disorders

Balance Disorders & Dizziness

See: Dystonia

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) Mary Dunkle 55 Kenosia Avenue Danbury, CT 06810 (203) 744-0100 (203) 263-9938 [email protected] www.rarediseases.org 1,2,3,4,6,8 English

Autoimmune Myocarditis

See: Cobalamin (B12) Defiency

Blepharospasm

Becker Muscular Dystrophy See: Muscular Dystrophy

Beckwith-Wiedemann Syndrome BECKWITH-WIEDEMANN CHILDREN’S FOUNDATION Cheryl Hendrickson 9031 Cascadia Ave. Everett, WA 98208 (425) 338-4610 (425) 357-8575 (FAX) [email protected] www.beckwithwiedemannsyndrome.org 2,3,4,6,7,9 English, Spanish, Italian, French, German, and other

Bedwetting See: Incontinence

Behcet’s Disease See: Autoimmune Disorders

Benign Congenital Hypotonia See: Spinal Muscular Atrophy

Berger Disease See: Kidney Disorders

Beta Thalassemia Major See: Cooley Anemia, Thalassemia Major

Beuren Syndrome See: Williams Syndrome

Biotinidase Deficiency See: Metabolic Disorders

Birthmark See: Nevi, Giant Congenital

Bleeding Disorders See: Hemophilia

Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (BPES) See: Craniofacial Disorders

Bone Marrow Transplant BLOOD & MARROW TRANSPLANT INFORMATION NETWORK Susan Stewart 1548 Old Skokie Road, Suite 1 Highland Park, IL 60035 (888) 597-7674 (847) 433-3313 (847) 433-4599 (FAX) [email protected] www.bmtinfonet.org 1,2,3,4 English

Bone Tumor-Epidermoid Cyst-Polyposis See: Colon Cancer, Hereditary

Bonnevie-Ulrich Syndrome See: Turner Syndrome

Bourneville Pringle Syndrome See: Tuberous Sclerosis

Bowel Dysfunction/ Irritable Bowel Syyndrome/ GERD/Fecal Incontinence INTERNATIONAL FOUNDATION FOR FUNCTIONAL GASTROINTESTINAL DISORDERS (IFFGD) PO Box 170864 Milwaukee, WI 53217 (414) 964-1799 (888) 964-2001 (414) 964-7176 (FAX) [email protected] www.iffgd.org 1,2,6,7,8 English

Cornelia de Lange Syndrome; Brain Attack See: Stroke

Brain Injury BRAIN INJURY ASSOCIATION OF AMERICA Greg Ayotte 1608 Spring Hill Rd. Suite 110 Vienna, VA 22182 (800) 444 6443 (703) 761-0755 (FAX) [email protected] www.biausa.org 1,2,4,5,7 Spanish materials BRAIN INJURY ASSOCIATION OF AMERICA Wendy Leedy 1608 Spring Hill Road, Suite 110 Vienna, VA 22182 (703) 761-0750,622 (800) 444-6443 (703) 761-0755 (FAX) www.biausa.org

Brain Injury; Traumatic/ Acquired RECOVERY ASSOCIATION Georgina McKee RN.MA. 8300 Republic Airport, Suite 106 Farmingdale, NY 11735 (631) 756-1826 (631) 756-1827 (FAX) [email protected] www.comarecovery.org 1,2,3,4,7

Brain Stem Malformations See: Joubert Syndrome; Syringomyelia

Brain Tumors AMERICAN BRAIN TUMOR ASSOCIATION 8550 W Bryn Mawr, Suite 550 Chicago, IL 60631 (800) 886-ABTA2282 (773) 577-8750 (773) 577-8738 (FAX) [email protected] www.abta.org 1,2,3,4,6,7,8 English BRAIN TUMOR FOUNDATION FOR CHILDREN, INC Mary Campbell 6065 Roswell Rd., NE Suite 505 Atlanta, GA 30328-4015 (404) 252-4107 (404) 252-4108 (FAX) [email protected] www.braintumorkids.org 1,2,3,5,6,7,8 Spanish BRAIN TUMOUR FOUNDATION OF CANADA Natalie Berkiw 620 Colborne Street, Suite 301 London, ON N6B 3R9 (519) 642-7755 (800) 265-5106 (519) 642-7192 (FAX) braintumo[email protected] www.braintumour.ca

CHILDREN’S BRAIN TUMOR FOUNDATION Kayla Giacin 1460 Broadway New York, NY 10036 (866) 228-4673, OR [email protected] www.cbtf.org 1,2,3,4,7,8 English NATIONAL BRAIN TUMOR FOUNDATION Harriet Patterson 55 Chapel Street, Suite 200 Newton, MA 2458 (617) 924 9997 (617) 924 9998 (FAX) www.braintumor.org 1,2,3,6,7,8 English, Spanish, French NATIONAL BRAIN TUMOR SOCIETY Dawn Grenier 55 Chapel Street, Suite 200 Newton, MA 2458 (617) 924-9997,105 (800) 770-8287 (617) 924-9998 (FAX) [email protected] www.braintumor.org 1,2,4,7,8 English

Branched Chain Ketonuria See: Maple Syrup Urine Disease

Brancher Deficiency See: Glycogen Storage Diseases

Branchio-Oto-Renal Syndrome See: Craniofacial Disorders; Hearing Impairments; Kidney Disorders

Brittle Bone Disease See: Osteogenesis Imperfecta

Broad Thumb-Hallux Syndrome See: Rubinstein-Taybi Syndrome

Burns PHOENIX SOCIETY FOR BURN SURVIVORS Amy Acton 1835 RW Berends Dr SW Grand Rapids, MI 49519-4955 (800) 888-2876 (616) 458-2773 (616) 458-2831 (FAX) [email protected] www.phoenix-society.org 1,2,3,6 English, Spanish

Callosal Agenesis See: Agenesis of the Corpus Callosum; Aicardi Syndrome

Cancer CANADIAN CANCER SOCIETY: NATIONAL OFFICE 55 St. Clair Avenue West, Ste 300 Toronto, ON M4V 2Y7 (416) 961-7223 (416) 961-4189 (FAX) [email protected] www.cancer.ca 2,7,8 English, French

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National Resources for Specific Disabilities

CANDLELIGHTERS CHILDHOOD CANCER FOUNDATION Ruth Hoffman 10400 Connecticut Ave. Suite A Kensington, MD 20895 (855) 858-2226 (301) 962-3520 (301) 962-3521 (FAX) www.acco.org 1,2,5,6,7 English, Spanish CHILDHOOD CANCER FOUNDATION: CANDLELIGHTERS CANADA Megan Davidson 21 St. Clair Avenue East, Ste 801 Toronto, ON M4T 1L9 (800) 363-1062 (416) 489-6440 (416) 489-9812 (FAX) [email protected] CHILDREN’S CANCER AND BLOOD FOUNDATION Jennifer Zaleski 333 East 38th Street, Suite 830 New York, NY 10016 (212) 297-4336 (212) 297-4340 (FAX) [email protected] www.childrenscbf.org CURESEARCH NATIONAL CHILDHOOD CANCER FOUNDATION Laura Thrall 4600 East West Highway, #600 Bethesda, MD 20814 (800) 458-6223 (301) 718-0042 (301) 718-0047 (FAX) [email protected] www.nccf.org 1,2,6 English THE NATIONAL CANCER INFORMATION CENTER Laura Maccio (800) 227-2345 (866) 228-4327 [email protected] www.cancer.org 1,2,3,4,5,6,7,8 Spanish, English

Cancer, Brain See: Brain Tumors

Cancer, Gastrointestinal See: Colon Cancer, Hereditary

Carbamyl Phosphate Synthetase (CPS) Deficiency See: Urea Cycle Disorders

Cardiac Disorders See: Heart Disorders

Cardio-Facio-Cutaneous Syndrome See: Heart Disorders; Ichthyosis

Carnitine Deficiency Syndromes

Central Hypoventilation Syndrome, Congenital

See: Acidemia, Organic; Mitochondrial Disorders; Muscular Dystrophy

See: Apnea, Sleep; Intestinal Pseudo-Obstruction Syndrome; Ventilator Use

Carnitine Palmityl Transferase Deficiency

Cerebellar Hypoplasia

See: Acidemia, Organic; Mitochondrial Disorders; Muscular Dystrophy

Carpenter Syndrome See: Craniofacial Disorders

Cartilage-Hair Hypoplasia See: Dwarfism; Growth Disorders; Short Stature

Cat’s Cry Syndrome

Cerebellar Vermis Aplasia/Hypoplasia See: Joubert Syndrome

Cerebello-Oculocutaneous Telangiectasia See: Ataxia Telangiectasia

Cerebelloretinal Hemangioblastomatosis

Cholestatis with Peripheral Pulmonary Stenosis

Cerebrooculorenal Dystrophy

Choroideremia

See: Lowe Syndrome

Cerebroside Lipidosis See: Gaucher Disease

Cerebrotendinous

See: Cri Du Chat Syndrome

See: Von Hippel-Lindau Syndrome

See: Leukodystrophy; Tay-Sachs Disease

Causalgia Syndrome

Cerebral Gigantism

Chagas Disease

See: Reflex Sympathetic Dystrophy Syndrome

Celiac Disease CANADIAN CELIAC ASSOCIATION Margo - Admin. 5170 Dixie Rd,Ste 204 Mississauga, ON L4W 1E3 (800) 363-7296 (905) 507-6208 (905) 507-4673 (FAX) www.celiac.ca

Celiac Disease/Dermatitis Herpetiformes CELIAC DISEASE FOUNDATION Elaine Monarch 20350 Ventura Blvd, Suite 240 Woodland Hills, CA 91364 (818) 716-1513 (818) 267-5577 (FAX) www.celiac.org English, Spanish

Celiac Sprue AMERICAN CELIAC SOCIETY Annette Bentley PO Box 23455 New Orleans, LA 70183-0455 (504) 305-2968 (504) 305-2970 (FAX) [email protected] www.americanceliacsociety.org 2,3,4,5,6,7,8,9 English, Spanish, Italian CELIAC SUPPORT ASSOCIATION Larry Brauer, Executive Director PO Box 254 Seward, NE 68434 (877) 272-4272 (402) 643-4108 (FAX) [email protected] www.csaceliacs.org 1,2,3,4,5,6,7,8,9 English

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources

See: Joubert Syndrome

MATHENY MEDICAL & EDUCATIONAL CENTER Deborah Andreoni 65 Highland Avenue PO Box 339 Peapack, NJ 07977 (908) 234-0011 (908) 719-2137 (FAX) [email protected] www.matheny.org 2,7 English, Spanish

5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

12 January 2017 • EP MAGAZINE | eparent.com

See: Sotos Syndrome

Cerebral Palsey ONTARIO FEDERATION FOR CEREBRAL PALSY 1630 Lawrence Avenue West Suite 104 Toronto, ON M6L 1C5 (416) 244-9686 (877) 244-9686 (416) 244-6543 (FAX) [email protected] www.ofcp.ca 1,2,3,4,6,7,8 UNITED CEREBRAL PALSY ASSOCIATION OF GREATER INDIANA Kelley Romweber 8020 Zionsville Road Indianapolis, IN 46268 (317) 871-4032, OR [email protected] www.ucpaindy.org English, some materials in Spanish UCP KIDS (UNIQUE COMMUNITY PROGRAMS FOR KIDS) A Division of UCP of Pittsburgh Dori Ortman 1400 S Braddock Avenue Pittsburgh, PA 15218 (412) 683-7100 (888) 954-2424 (412) 683-4160 (FAX) [email protected] www.ucppittsburgh.org 1,2,3,4,7 UNITED CEREBRAL PALSY OF NEW YORK CITY 80 Maiden Lane - 8th Floor New York, NY 10038 (877) UCP-CONNECT (212) 951-7124 (FAX) [email protected] www.ucpnyc.org 1,2,3,4,7 UNITED CEREBRAL PALSY (UCP) NATIONAL OFFICE Karin Hitselberger 1825 K Street NW, Suite 600 Washington, DC 20006 (202) 973-7180 (202) 776-0414 (FAX) [email protected] www.ucp.org 1,2,3,4,5,6,7 English, Spanish

See: Autoimmune Disorders

Chanarin-Dorfman Syndrome See: Ichthyosis

Charcot-Marie-Tooth Disease CHARCOT-MARIE-TOOTH ASSOCIATION Elizabeth Ouellette PO Box 105 Glenolden, PA 19036 (800) 606-2682 ext 114 (650) 248-3409 (610) 499-9267 (FAX) [email protected] www.cmtausa.org 1,2,4,5,6,7,8,9 English, Spanish

CHARGE Syndrome CHARGE SYNDROME FOUNDATION, INC Sheri Stanger 318 Half Day Rd, #305 Buffalo Grove, IL 60089 (800) 442-7604 (516) 684-4720 (888) 317-4735 (FAX) [email protected] www.chargesyndrome.org 1,2,3,4,6,7,8,9 English, Spanish

Chediak Higashi syndrome See: Hermansky-Pudlak Syndrome

Chemke Syndrome See: Hydrocephalus; Lissencephaly

Childhood Apraxia of Speech THE CHILDHOOD APRAXIA OF SPEECH ASSOCIATION Kathy Bauer 416 Lincoln Avenue, 2nd Floor Pittsburgh, PA 15209 (412) 343-7102 [email protected] www.apraxia-kids.org 1,2,3,4,6,8 Some web articles in Spanish, Spanish subtitles in “Taking It Home: Practicing Speech Where Kids Live and Play”

See: Alagille Syndrome

Cholesteryl Ester Storage Disease See: Tay-Sachs Disease

Chondrodysplasia Punctata See: Growth Disorders; Ichthyosis See: Macular Diseases; Retinitis Pigmentosa; Visual Impairments

Christ-Siemens-Touraine Syndrome See: Craniofacial Disorders;

Chromosome #4 under Wolf-Hirschhorn 4P- SUPPORT GROUP Wendy Trout 2159 128th St. New Richmond, WI 54017 (715) 248-3937 (503) 661-7546 (FAX) www.4p-supportgroup.org 1,2,3,6,9

Chromosome 15 DUP15Q ALLIANCE Kadi Luchsinger PO Box 674, Fayetteville, NY 13066 (855) DUP15QA [email protected] www.dup15p.org 1,2,3,6,7,8,9

Chromosome 18 & 13 and Related Disorders SOFT: SUPPORT ORGANIZATION FOR TRISOMY 18, 13 AND RELATED DISORDERS Barbara VanHerreweghe 2982 S Union St Rochester, NY 14624 (800) 716-SOFT (585) 594 1957 (FAX) [email protected] www.trisomy.org 1,2,3,5,6,8 English, Spanish

Chromosome 18 Disorders CHROMOSOME 18 REGISTRY & RESEARCH SOCIETY Valerie Rogler 7155 Oakridge Dr. San Antonio, TX 78229 (210) 657-4968 (210) 657-4968 (FAX) [email protected] www.chromosome18.org 1,2,3,6,7,8 English UNIQUE - THE RARE CHROMOSOME DISORDER SUPPORT GROUP Beverly Searle PhD G1, The Stables Station Road West Oxted, Surrey, United Kingdom RH8 9EE 0044 01883 723356 [email protected] www.rarechromo.org 1,2,3,5,6,9 Information guides available in English, Spanish and others

EVERGREEN CENTER WWW.EVERGREENCTR.ORG WWW W.EVERGREENCTR.O ORG

TWO PROGRAMS, ONE STANDARD OF EXCELLENCE THE CENTER FOR BEHA VIOR DEVELOPMENT Autism • Severe Maladaptive Behavior • Ages 6-21 Dual Diagnosis of Mental illness/Intellectual Disability/ Traumatic Brain injury Postraumatic Stress Disorder • Physical Disability

THE CENTER FOR BASIC SKILLS Autism • Intellectual Disability • Physical Disability Sensory Impairments • Medical Needs • Ages 6-21 For over 30 years, Evergreen Center has provided living and learning environments for persons with autism and intellectual and developmental disabilities including physical disabilities, behavior disorders and complex health needs. For Mor Moree Infor Information: mation: Contact The Dir Director ector Of Family Ser Services vices & Admissions Evergreen Inc., Boulevard, Milford, Ever g reen Center Inc ., 345 Fortune Boulev ard, Milfor d, MA 01757 Phone: (508) 478-2631 • Email: Ser [email protected] reenctr.org [email protected] www.evergreenctr.org www .everg reenctr.org • Equal Opportunity Employer Employer

National Resources for Specific Disabilities

Chromosome 21 Ring

Chromosome Inversions

Coffin-Lowry Syndrome

See: Chromosome Deletions

NATIONAL CENTER ON CHROMOSOME INVERSIONS Jackie Barker 213 SE Charmont Lane Lake City, FL 32025 (386) 752-1548 [email protected] 1,2 English

COFFIN-LOWRY SYNDROME FOUNDATION Mary C. Hoffman 675 Kalmia PL NW Issaquah, WA 98027 425-427-0939 [email protected] www.clsf.info 1,2,3 English

Chromosome 22 Disorders CHROMOSOME 22 CENTRAL Murney Rinholm 7108 Partinwood Drive Fuquay-Varina, NC 27526 (919) 567-8167 [email protected] www.c22c.org 1,2,3,6,9 English, French, Spanish

Chromosome Translocations See: Chromosome Deletions

Cogan’s Syndrome See: Autoimmune Disorders

Chromosome 3, Monosomy 3p2

Chronic Encephalitis and Epilepsy

Colitis

See: Chromosome Deletions

See: Rasmussen Syndrome

See: Crohn Disease and Colitis

Chromosome 4 Ring

Chronic Fatigue Syndrome

Coloboma

See: Chromosome Deletions;

Chromosome 45,X See: Turner Syndrome

Chromosome 45,X/46,XX See: Turner Syndrome

Chromosome 46XY/47,XXY See: Klinefelter Syndrome

Chromosome 47,XXY See: Klinefelter Syndrome

Chromosome 47,XYY See: Klinefelter Syndrome

CFIDS ASSOCIATION OF AMERICA YOUTH ALLIENCE PO Box 220398 Charlotte, NC 28222-0398 (704) 365-2343 (704) 365-2343 (FAX) [email protected] www.cfids.org 1,2,8

Chronic Inflammatory Demyelinating Polyneuropathy See: Autoimmune Disorders

Chronic Inflammatory Demyelinating Polyradiculoneuropathy

See: Visual Impairments

Colon Cancer, Hereditary SIDNEY KIMMEL COMPREHENSIVE CANCER CENTER Kathy Romans Johns Hopkins University; 550 N Broadway Suite 108 Baltimore, MD 21231 (410) 955-3875 (410) 955-6787 (FAX) [email protected] www.hopkinskimmelcancercenter.org 1,2,3,9

Complex Regional Pain Syndrome

See: Guillain-Barr Syndrome

See: Reflex Sympathetic Dystrophy Syndrome

Chromosome 49,XXXXY

Chronic Localized Encephalitis

See: Klinefelter Syndrome

See: Rasmussen Syndrome

Congenital Adrenal Hyperplasia (CAH)

Chromosome 48,XXXY See: Klinefelter Syndrome

Chromosome 5pSee: Cri Du Chat Syndrome

Cleft Palate

TRISOMY 9 INTERNATIONAL PARENT SUPPORT 4027 E. Piedmont Dr. Highland, CA 92346 (909) 862-4470 [email protected] 3 English

CLEFT PALATE FOUNDATION Stephanie Williamson, MS 1504 E. Franklin St., Suite 102 Chapel Hill, NC 27514-2820 (800) 242-5338 (919) 933-9044 (919) 933-9604 (FAX) [email protected] www.cleftline.org 2,4,6,7,8,9 English, Spanish

Chromosome 9 Ring

CMV, Congenital

Chromosome 9 Disorders

See: Chromosome Deletions; Craniofacial Disorders

See: Cytomegalovirus (CMV), Congenital

Chromosome Abnormalities

Cockayne Syndrome

See: Genetic Disorders

SHARE AND CARE/COCKAYNE SYNDROME NETWORK Jackie Arias Clark PO Box 282 Waterford, VA 20197 (703) 727-0404 [email protected] www.cockaynesyndrome.org 1,2,3,4,6,8,9

Chromosome Deletions, Trisomies, Translocations, Inversions CHROMOSOME DISORDER OUTREACH, INC. (CDO) Linda Sorg PO Box 724 Boca Raton, FL 33429-0724 (561) 395-4252 [email protected] www.chromodisorder.org 1,2,3,4,9 English

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CARES FOUNDATION INC Dina Matos 2414 Morris Ave, Suite 110 Union, NJ 7083 (973) 912-3895 (866) 227-3737 (908) 686-2019 (FAX) [email protected] www.caresfoundationorg 1,2,3,4,5,6,7,8

Congenital Sensory Neuropathy with Anhidrosis See: Familial Dysautonomia

Conradi-Hünermann Syndrome See: Growth Disorders; Ichthyosis

Cooley Anemia/Thalassemia major COOLEY’S ANEMIA FOUNDATION, INC Eileen Scott 330 7TH Ave,Ste 200 New York, NY 10001 (212) 279-8090 (212) 279-5999 (FAX) [email protected] www.thalassemia.org 1,2,3,4,5,6,7,8 English, Asian, limited Spanish and Greek material

THALASSEMIA FOUNDATION OF CANADA Helen Ziavras 338 Falstaff Ave, Suite 204 North York, ON M6L 3E8 416-242-THAL8425 [email protected] 1,2,3,4,5,6,8 English spoken, some publications in French THALASSEMIA ACTION GROUP Jesal Kapasi 330 Seventh Ave., #200 New York, NY 10001 (212) 279-8090 (212) 279-5999 (FAX) www.cooleysanemia.org 1,2

Cornelia de Lange Syndrome CORNELIA DE LANGE SYNDROME FOUNDATION Kelly Brown 302 W Main St #100 Avon, CT 6001 (800) 753-2357 (860) 676-8166 (860) 676-8337 (FAX) [email protected] www.CdLSusa.org 1,2,3,6,7,8 English, Spanish publications

Corpus Callosum Disorders See: Agenesis of the Corpus Callosum; Aicardi Syndrome

COX Deficiency See: Mitochondrial Disorders

Craniocarpotarsal Dystrophy See: Freeman-Sheldon Syndrome

Craniofacial Disorders AMERIFACE Debbie Oliver PO Box 751112 Las Vegas, NV 89136 (888) 486-1209 (702) 769-9264 (702) 341-5351 (FAX) [email protected] www.ameriface.org 1,2,3,4,5,6,7 English CHILDREN’S CRANIOFACIAL ASSOCIATION 13140 Coit Road, Suite 517 Dallas, TX 75240 (800) 535-3643 (214) 570-8811 (FAX) [email protected] www.ccakids.org 1,2,3,4,6 CHILDREN’S CRANIOFACIAL ASSOCIATION Annie Reeves 13140 Coit Road, Suite 517 Dallas, TX 75240 (800) 535-3643 (214) 570-9099 (214) 570-8811 (FAX) [email protected] www.ccakids.org 1,2,3,4,6,7

CRANIOSYNOSTOSIS AND POSITIONAL PLAGIOCEOHALY SUPPORT INC. (CAPPS) Jennifer Pitchke 6905 Xandu Court Fredericksburg, VA 22407 (540) 786-9563 (845) 454-5902 [email protected] www.cappskids.org 1,2,5,7 English FACES: THE NATIONAL CRANIOFACIAL ASSOCIATION Lynne Mayfield, President PO Box 11082 Chattanooga, TN 37401 (423) 266-1632 (800) 332-2373 [email protected] www.faces-cranio.org 1,2,3,4 FORWARD FACE: HELPING CHILDREN WITH CARNIOFACIAL CONDITIONS Avery O’Callaghan Ph.D. 333 East 30th Street, Lobby Unit New York, NY 10016 (212) 263-6656 (212) 263-7534 (FAX) [email protected] myFace.org 1,4 LET’S FACE IT USA Patricia Anderson University of Michigan School of Dentistry/Dentistry Library 1011 N. University Ann Arbor, MI 48109 (734) 763-6933 (734) 936-1404 (FAX) [email protected] www.dent.umich.edu/faceit 1,2 English TENNESSEE CRANIOFACIAL CENTER 975 E Third St Chattanooga, TN 3740 (423) 778-7000 [email protected] www.erlanger.org 1,2,4,7 Financial assistance for medicalrelated travel

Craniofacial, Facial Reconstruction MYFACE Carolyn Spector 333 East 30th Street, Lobby Office New York, NY 10016 (212) 263-6656 (212) 263-7534 (FAX) [email protected] www.myface.org 1,2,3,5,8 English, Spanish, Mandarin

Craniosynostosis See: Craniofacial Disorders

Cri Du Chat Syndrome 5P- SOCIETY Laura Castillo PO Box 268 Lakewood, CA 90714 (888) 970-0777 (562) 804-4506 (562) 920-5240 (FAX) [email protected] www.fivepminus.org 1,2,3,6

Crib Death

Cystinuria

See: Sudden Infant Death Syndrome (SIDS)

CYSTINURIA SUPPORT NETWORK Jann Ledbetter 21001 NE 36th St Sammamish, WA 98074 (425) 868-2996 (425) 897-0675 (FAX) [email protected] www.cystinuria.com 2,3,4,9 English

Crohn Disease & Colitis CCFA: CROHN’S & COLITIS FOUNDATION OF AMERICA Erin Stoeber 733 Third Ave, Suite 510 New York, NY 10017 (800) 932-2423 (212) 779-4098 (FAX) [email protected] www.ccfa.org 1,2,3,4,5,6,7,8,9 English, French

Crouzon Disease See: Craniofacial Disorders

Cutis Hyperelastica See: Ehlers-Danlos Syndrome

Cyclic Vomiting Syndrome CYCLIC VOMITING SYNDROME ASSOCIATION PO Box 270341 Milwaukee, WI 53227 (414) 342-7880 (414) 342-8980 (FAX) [email protected] www.cvsaonline.org 1,2,3,4,5,6,7,8 English, Spanish

Cystic Fibrosis CYSTIC FIBROSIS CANADA Diana Ginsberg 2323 Yonge Street, Suite 800 Toronto, ON M4P 2C9 (800) 378-2233 (416) 485-9149 (416) 485-0960 (FAX) [email protected] www.cysticfibrosis.ca 1,2,5,8 English, French CYSTIC FIBROSIS FOUNDATION Shirley Windsor 6931 Arlington Road, 2nd Floor Bethesda, MD 20814 (800) 344-4823 (301) 951-4422 (301) 951-6378 (FAX) www.cff.org 1,2,3,4,5,6,7,8,9 English,Spanish

Cystinosis See: Kidney Disorders

Cystinosis, Fanconi Syndrome CYSTINOSIS RESEARCH NETWORK Christy Greeley 302 Whytegate Court Lake Forest, IL 60045 (866) 276-3669 (847) 735-0471 (847) 235-2773 (FAX) [email protected] www.cystinosis.org 1,2,3,6,7,8 English

Cytomegalovirus (CMV) NATIONAL CONGENITAL CMV DISEASE REGISTRY Gail J Demmler-Harrison MD Texas Children’s Hospital Feigin Center Suite 1150 1102 Bates St Houston, TX 77030-2399 (832) 824-4387 (832) 825-4347 (FAX) [email protected] www.bcm.tmc.edu/pedi/infect/cmv 1,2,3,4,6,7,9 English, some Spanish

Dandy-walker syndrome

THE NATIONAL CONSORTIUM ON DEAF-BLINDNESS Gail Leslie Teaching Research Institute 345 N. Monmouth Ave. Monmouth, OR 97361 (503) 838-8754 (800) 854-7013 (503) 838-8150 (FAX) [email protected] www.nationaldb.org 1,2,4

Debrancher Enzyme Deficiency See: Glycogen Storage Diseases; Muscular Dystrophy

Decerebrate Dementia See: Subacute Sclerosing Panencephalitis

Dejerine Sottas Disease See: Muscular Dystrophy

Dejerine-Landouzy See: Muscular Dystrophy; FacioScapulo-Humeral Muscular Dystrophy

DANDY WALKER SYNDROME NETWORK Desiree’ Fleming 5030 142nd Path W. Apple Valley, MN 55124 (952) 423-4008 2,3,4 English

Delta Storage Pool Disease

Darier Disease

Dermatomyositis

See: Ichthyosis

See: Arthritis; Muscular Dystrophy; Myositis

Deaf and Hard of Hearing NATIONAL ASSOCIATION OF THE DEAF Howard Rosenblum 8630 Fenton Street, Suite 820 Silver Spring, MD 30910 (301) 587-1788 (301) 587-1791 (FAX) [email protected] www.nad.com 1,2,3,4,6,7 American Sign Language Deaf-Blind AMERICAN ASSOCIATION OF THE DEAF-BLIND Elizabeth Spiers PO Box 2831 Kensington, MD 20891 (301) 495-4403 (301) 495-4402 (301) 495-4404 (FAX) [email protected] www.aadb.org 1,2,6,7 English

CANADIAN DIABETES ASSOCIATION NATIONAL OFFICE 1400-522 University Ave Toronto, ON M5G 2R5 (800) 226-8464 (416) 363-3393 (FAX) [email protected] www.diabetes.ca 2,4,5,6,7,8 English, French

DiGeorge Sequence See: Genetic Disorders

Digestive Disorders See: Celiac Disease; Celiac Sprue; Crohn Disease and Colitis; Gluten Intolerance; Intestinal Pseudo-Obstruction Syndrome; Ostomy

Digestive Dysmotility See: Intestinal PseudoObstruction Syndrome

Dimorsier Syndrome See: Growth Disorders

See: Hermansky-Pudlak Syndrome

Discoid Lupus

Dermatitis Herpetiformis

Down Syndrome

See: Celiac Disease; Celiac Sprue; Gluten Intolerance

ACDS (ASSOCIATION FOR CHILDREN WITH DOWN SYNDROME) Michael M. Smith 4 Fern Place Plainview, NY 11803 (516) 933-4700 (516) 933-9524 (FAX) [email protected] WWW.ACDS.org 1,2,3,4 CANADIAN DOWN SYNDROME SOCIETY Kirk Crowther 2003 14 Street NW, Suite 103 Calgary, AB T2M 3N4 (800) 883-5608 (403) 270-8291 (FAX) [email protected] www.cdss.ca 1,2,3,4,5,6,7 English FOUNDATION FOR CHILDREN WITH DOWN SYNDROME Aleta R. Capel 1502 S Michigan Ave, Bldg. #12 Suite# 3 Joplin, MD 64804 (417) 626-8603 [email protected] www.volunteermatch.org/search/ org31782.jsp 2,4,7,8,9 English, Spanish INTERNATIONAL MOSAIC DOWN SYNDROME ASSOCIATION (IMDSA) Brandy Hellard PO Box 354 Trenton, OH 45067 (513) 988-6817 (888) MDS-LINK (775) 295-9373 (FAX) [email protected] www.imdsa.org 1,2,3,4,6,7,8,9 English, Spanish, Portuguese; All correspondence can be translated

Developmental Disabilities AMERICAN ASSOCIATION ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES (AAIDD) 501 3rd Street, NW, Suite 200 Washington, DC 20001 (202) 387-1968 (202) 387-2193 www.aaidd.org

Diabetes inspidus See: Autoimmune Disorders

Diabetes Mellitus AMERICAN DIABETES ASSOCIATION Center for Information and Community Support 1701 N. Beauregard St. Alexandria, VA 22311 (703) 549-1500 (800) 3423-2383 (703) 549-6995 (FAX) [email protected] www.diabetes.org 1,2,3,4,5,6,7,8,9 English, Spanish

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources

Diabetes Mellitus

5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

See: Autoimmune Disorders

KENNEDY WILLIS CENTER ON DOWN SYNDROME Helen E. Stepowany At Pathfinder Village (Education, Research & Counseling) 3 Chenango Road Edmeston, NY 13335 (607) 965-8377,117 (607) 965-8655 (FAX) [email protected] www.pathfindervillagestories.org 1,2,3,4,9 English NATIONAL DOWN SYNDROME CONGRESS David Tolleson 30 Mansell Court, Suite 108 Roswell, GA 30076 (770) 604-9500 (770) 604-9898 (FAX) [email protected] www.ndsccenter.org 1,2,3,4,5,6,7 Spanish NATIONAL DOWN SYNDROME SOCIETY Vanessa Quick 8 E 41st St, 8th Floor New York, NY 10017 (800) 221-4602 (212) 763-4364 (212) 979-2873 (FAX) [email protected] www.ndss.org 1,2,3,4,5,6,7 English, Spanish

Down Syndrome, Acid Maltase Deficiency C.H.A.N.G.E.S DOWN SYNDROME SUPPORT GROUP Donna Greenley 291 Charlotte Street, Unit 3 Peterborough, ON K9J 2V6 (705) 749-6695 (866) 656-9677 (705) 749-5864 (FAX) www.aboutchanges.com

Dual Sensory Impairments See: Deaf-Blind

Dubowitz Syndrome DUBOWITZ SYNDROME PARENT SUPPORT NETWORK Ruth Kimberly PO Box 2441 Vincennes, IN 47591 (812) 886-6875 (812) 886-1128 (FAX) [email protected] www.dubowitz.org 2,4,6,7 English

Duchenne, Muscular Dystrophy PARENT PROJECT MUSCULAR DYSTROPHY Ryan Fischer 401 Hackensack Avenue, 9th Floor Hackensack, NJ 7601 (201) 250-8440 (800) 714-5437 (201) 944-9987 (FAX) [email protected] www.parentprojectmd.org 1,2,3 English, Spanish

eparent.com | EP MAGAZINE • January 2017 15

National Resources for Specific Disabilities

Dwarfism

Dystonia

BILLY BARTY FOUNDATION Lisa Luken 10222 Crosby Road Harrison, OH 45030 (513) 738-4428 (513) 385-2468 (FAX) [email protected] LITTLE PEOPLE OF AMERICA Joanna Campbell 250 El Camino Real, Suite 218 Tustin, CA 92780 (714) 368-3689 (888) LPA-2001 (714) 368-3367 (FAX) [email protected] www.lpaonline.org 1,2,3,4,5,6,7 Spanish materials KNIEST SED GROUP Cecilie [email protected] 1,2,3,4,6,7,9 English

DYSTONIA MEDICAL RESEARCH FOUNDATION, CANADA Janet L. Hieshetter One East Wacker Drive Suite 1730 Chicago, IL 60601-1905 (312) 755-0198 (800) 377-DYST (3978) (312) 803-0138 (FAX) [email protected] www.dystonia-foundation.org 1,2,3,5,6,7,8 English, French

Dysautonomia, Familial See: Familial Dysautonomia

Dysautonomia NATIONAL DYSAUTONOMIA RESEARCH FOUNDATION (NDRF) Daniel P. Smith PO Box 301 Red Wing, MN 55066-0301 (651) 327-0367 (651) 267-0524 (FAX) [email protected] www.ndrf.org 1,2,4,6,7,8,9 English

Dysgenesis of the Corpus Callosum See: Agenesis of the Corpus Callosum

Dyslexia DYSLEXIA RESEARCH INSTITUTE Dr. Patricia K. Hardman 5246 Centerville Rd Tallahassee, FL 32309 (850) 893-2216 (850) 893-2440 (FAX) [email protected] www.dyslexia-add.org 7,9 RECORDING FOR THE BLIND & DYSLEXIC 20 Roszel Rd Princeton, NJ 08540 (800) 803-7201 (800) 221-4792 (609) 987-8116 (FAX) www.rfbd.org 2 Extensive lending library of academic textbooks

Dysostosis, Acrofacial, Nager Type See: Nager and Miller Syndromes

Dysostosis, Mandibulofacial

Eaton-Lambert Syndrome See: Muscular Dystrophy

Ectrodactyly-Ectodermal Dysplasia-Cleft Lip/Palate (EEC) Syndrome See: Cleft Palate; Craniofacial Disorders; Ectodermal Dysplasias

Education, Literacy, Learning Disabilities, Learning Differences, Dyslexia THE INTERNATIONAL DYSLEXIA ASSOCIATION 40 York Road, 4th Floor Baltimore, MD 21204 (410) 296-0232 (800) 222-2123 (410) 321-5069 (FAX) [email protected] dyslexiaIDA.org 1,2,4,5,6,7 Spanish

EEC Syndrome See: Cleft Palate; Craniofacial Disorders; Ectodermal Dysplasias

Ehlers-Danlos Syndrome EHLERS-DANLOS NATIONAL FOUNDATION Shane Robinson 7918 Jones Branch Dr, Suite 300 Suite 1601, South Tower McLean, VA 22102 (703) 506-2892 (703) 506-3266 (FAX) [email protected] www.ednf.org 1,2,3,6,7,8 EHLERS-DANLOS NATIONAL FOUNDATION 1760 Old Meadow Road, Ste 500 McLean, VA 22102 (703) 506-2892 (703) 506-3266 (FAX) [email protected] www.ednf.org

Eintein Syndrome See: Hearing Impairments; Kidney Diseases, Visiual Impairments

Elastosis Dystrophica Syndrome

See: Nager and Miller Syndromes

See: Pseudoxanthoma Elasticum (PXE)

Dysostosis, Postaxial Acrofacial

Elephantitis

See: Nager and Miller Syndromes

See: Lymphedema

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Emery-Dreifuss Muscular Dystrophy See: Muscular Dystrophy

EMG Syndrome See: Beckwith-Wiedemann Syndrome

Encephalitis and Epilepsy, Chronic See: Rasmussen Syndrome

Encephalitis, Chronic Localized See: Rasmussen Syndrome

Encephalitis, Rasmussen See: Rasmussen Syndrome

Encephalofacial Angiomatosis See: Sturge-Weber Syndrome

Encephalomyeloradiculopat hy, Acute isseminated See: Guillain-BarrΘ Syndrome

Encephalotrigeminal Angiomatosis See: Sturge-Weber Syndrome

Endocardial Fibroslastosis

EPILEPSY CANADA Pat Hutchison 21-25 Valleywood Drive Markham, ON L3R 5L9 (877) 734-0873 [email protected] Epilepsy.ca 2,4,6,7,8,9 English, French EPILEPSY FOUNDATIONNATIONAL OFFICE Thomas Buckley 8301 Professional Place - East Suite 200 Landover, MD 20785-2353 (800) 332-1000 (866) 748-8008 (301) 577-2684 (FAX) [email protected] www.epilepsy.com 1,2,3,4,5,6,7,8,9 English, Spanish

Epiloia See: Tuberous Sclerosis

Erdheim-Chester Disease Erythroblastophthisis See: Anemia, Aplastic

Erythroblastotic Anemia of Childhood See: Cooley Anemia; Thalassemia Major

Enteropathy, GlutenSensitive

Erythroblastotic Anemia of Childhood

See: Celiac Disease; Celiac Sprue; Gluten Intolerance

See: Cooley Anemia;Thalassemia Major

Eosinophilic Granuloma

Erythrohepatic Protoporphyria

Epidermolysis Bullosa, Dystrophic DEBRA OF AMERICA, INC. Brett Kopelan ED 75 Broad St, Suite 300 New York, NY 10004 (212) 868-1573 (855) CURE-4-EB (212) 868-9296 (FAX) [email protected] www.debra.org 1,2,3,5,6,7,8,9 English

See: Beckwith-Wiedemann Syndrome

Exostoses, Multiple Hereditary MHE AND ME Susan Wynn PO Box 651 Pine Island, NY 10969-0651 (845) 258-6058 [email protected] www.mhecoalition.org 1,2,3,4 English, Spanish, THE MHE COALITION Chele Zelina 6783 York Road, Apt. #104 Parma Heights, OH 44130 (440) 842-8817 [email protected] www.mhecoalition.org 1,2,6,8,9 Literature in Spanish, Italian, German, Japanese

See: Histiocytosis

See: Heart Disorders

See: Histiocytosis

Exomphalos-MacroglossiaGigantism (EMG) Syndrome

See: Liver Disorders; Porphyria

Erythroid Hypoplasia, constitutional See: Anemia, Cooley Anemia; Thalassemia Major

Erythrokeratodermias See: Ichthyosis

Erythrophagocytic Lymphohistiocytosis, Familial See: Histiocytosis

Epidermolytic Hyperkeratosis

Esophageal Atresia

See: Ichthyosis

See: VACTERL

Epilepsy

Essential Tremor

AMERICAN EPILEPSY SOCIETY M. Suzanne Berry 135 South LaSalle Street, Ste 2850 Chicago, IL 60603 (312) 883-3800 (312) 896-5784 (FAX) [email protected] www.aesnet.org 1,4,6,8 English, Spanish

INTERNATIONAL ESSENTIAL TREMOR FOUNDATION Catherine S. Rice PO Box 14005 Lenexa, KS 66285-4005 (913) 341-3880 (888) 387-3667 (913) 341-1296 (FAX) [email protected] www.essentialtremor.org 1,2,4,7,8 English, Spanish

Evans Syndrome See: Autoimmune Disorders

Fabry Disease FABRY SUPPORT & INFORMATION GROUP Jack Johnson 108 NE 2nd Street, Suite C PO Box 510 Concordia, MO 64020 (660) 463-1355 (866) 30F-ABRY (660) 463-1356 (FAX) [email protected] www.fabry.org 1,9 English INTERNATIONAL CENTER FOR FABRY DISEASE Dana Doheny Mount Sinai School of Medicine Department of Genetics and Genomic Sciences Box 1498, Fifth Ave at 100th St New York, NY 10029 (212) 659-6780 (212) 265-6779 (212) 659-6779 (FAX) [email protected] 1,2,4,8,9 English, Spanish KENNEDY KRIEGER INSTITUTE DOWN SYNDROME CLINIC George Capone MD 707 N. Broadway Baltimore, MD 21205 (443) 923-9200 (800) 873-3377 (443) 923-9400 (FAX) [email protected] www.kennedykrieger.org 1,2,4,8,9 English, Spanish

Facial Disfigurements ABOUTFACE INTERNATIONAL 1057 Steeles Ave. West PO Box 702 North York, ON M2R 3X1 (416) 597-2229,21 (800) 665-3223 (416) 597-8494 (FAX) [email protected] www.aboutface.ca 1,2,3,4,6,7,9 English, French

Facio-Cardio- Cutaneous Syndrome

Fetal Alcohol Spectrum Disorders (FASD)

See: Heart Disorders; Ichthyosis

See: Anemia,

NATIONAL ORGANIZATION ON FETAL ALCOHOL SYNDROME (NOFAS) Andy Kachor 1200 Eton Court, NW, 3rd Floor Washington, DC 20007 (202) 785-4585,213 (800) 66N-OFAS (202) 466-6456 (FAX) [email protected] www.nofas.org 1,2,4,7 English, Spanish FAMILY EMPOWERMENT NETWORK (FEN) Raina Zwadzich 1100 Delaplaine Ct. Madison, WI 53715 (608) 262-6590 (800) 462-5254 (608) 263-5813 (FAX) [email protected] mmed.wisc.edu www.pregnancyandalcohol.org 1,2,3,4,6,7,9 English THE CENTER FOR ALCOHOL AND DRUG RESOURCES, INC. Chanel Dupree 22-08 Route 208 South Suite 7 Fair Lawn, NJ 07410 (201) 740-7069 (201) 791-0147 (FAX) [email protected] www.tcadr.org 1,2,4,6 English THE FETAL ALCOHOL SYNDROME FAMILY RESOURCE INSTITUTE Vicky McKinney PO Box 2525 Lynnwood, WA 98036 (253) 531-2878 (800) 999-3429 (425) 640-9155 (FAX) [email protected] www.fetalalcoholsyndrome.org 1,2,3,4,5,6,7,9

Fanconi II

Fetal Face Syndrome

See: Cystinosis

See: Robinow Syndrome

Fanconi Panmyelopathy

FG Syndrome

See: Anemia

See: Fetal Alcohol Syndrome/Effect

FG SYNDROME FAMILY ALLIANCE, INC. Laurie Garza 922 NW Circle Blvd, Suite 160 PMB 290 Corvallis, OR 97330 (617) 577-9050 [email protected] www.fgsyndrome.org

Fatty Oxidation Disorder

Fischer Syndrome

See: Tay-Sachs Disease

See: Guillain-Barr Syndrome

Fulminating Hyperpyrexia

Focal Dermal Hypoplasia (FDH) Syndrome

See: Malignant Hyperthermia

FacioScapuloHumeral Muscular Dystrophy FSH SOCIETY, INC. Nancy Van Zant 450 Bedford Street Lexington, MA 02420 (781) 301-6060 (617) 658-7879 (FAX) [email protected] www.fshsociety.org 1,2,3,4,5,6,7,8,9 English, Spanish

Familial Adenomatous Polyposis See: Colon Cancer, Hereditary

Familial Ataxia See: Ataxia;

Familial Dysautonomia DYSAUTONOMIA FOUNDATION, INC. David Brenner 315 West 39th Street, Suite 701 New York, NY 10018 (212) 279-1066 (212) 279-2066 (FAX) [email protected] www.familialdysautonomia.org 1,2,5,6,7,8 English only

Familial Juvenile Polyposis See: Colon Cancer, Hereditary

Familial Pemphigus See: Ichthyosis

Familial Splenic Anemia See: Gaucher Disease

Fanconi Anemia

Farber Disease See: Tay-Sachs Disease

FAS/FAE

See: Metabolic Disorders

Female Sex Chromosome Disorders See: Turner Syndrome

Food Allergy THE FOOD ALLERGY AND ANAPHYLAXIS NETWORK 7925 Jones Branch Drive Suite 1100 McLean, VA 22102 (800) 929-4040 (703) 691-2713 (FAX) [email protected] www.foodallergy.org 1,2,6,7,9 English, Spanish

Forbes Disease See: Glycogen Storage Diseases; Muscular Dystrophy

See: Cobalamin (B12) Defiency

See: Galactosemia

Galactosemia GALACTOSEMIA FOUNDATION Scott Shepard PO Box 1512 Deerfield Beach, FL 33443 866-900-7421 [email protected] www.galactosemia.org 1,2,3,4,6,7,8 English

Gardner Syndrome

Fragile X Syndrome

See: Colon Cancer, Hereditary

FRAXA RESEARCH FOUNDATION Katie Clapp 10 Prince Place, Suite 203 Newburyport, MA 01950 (978) 462-1866 [email protected] www.fraxa.org 1,2,3,4,5,7,8,9 English NATIONAL FRAGILE X FOUNDATION Linda Sorensen 2100 M St. NW, Suite170 Box 302 Washington, DC 20037-1233 (800) 688-8765 (202) 747-6210 (202) 747-6208 (FAX) [email protected] www.FragileX.org 1,2,3,4,5,6,7,8,9 English, Spanish

Gastrointestinal Cancer

FRAXA See: Fragile X Syndrome

Freeman-Sheldon Syndrome FREEMAN-SHELDON PARENT SUPPORT GROUP Joyce Dolcourt 509 Northmont Way Salt Lake City, UT 84103 (801) 364-7060 [email protected] www.fspsg.org 2,3,4,7,9 English

Friedreich Disease See: Ataxia;

Friedreich Tabes See: Ataxia;

Fucosidosis

See: Craniofacial Disorders; Hearing Impairments

Folate Metabolism; Inborn Error of

Galactose-1-Phosphate Uridyl Transferase Deficiency

See: Colon Cancer, Hereditary

Gastrointestinal Disorders THE OLEY FOUNDATION Lisa Metzger 43 New Scotland Ave, MC 28 Albany Medical Center Albany, NY 12208 (800) 776-OLEY (518) 262-5079 518) 262-5528 (FAX) [email protected] www.oley.org 1,2,3,4,6,7 English

Gaucher Disease NATIONAL GAUCHER FOUNDATION Rhonda Buyers 5410 Edson Lane #220 Rockville, MD 20852 (800) 504-3189 (770) 934-2910 (770) 934-2911 (FAX) [email protected] www.gaucherdisease.org 1,2,3,4,5,6,7,8, English, Spanish, Russian

Genee-Wiedemann Syndrome See: Nager and Miller Syndrome

Genetic Disorders GENETIC ALLIANCE AUSTRALIA (FORMER KNOWN AS ASSOCIATION OF GENETIC SUPPORT OF AUSTRALASIA INC. (AGSA) Dianne Petrie c/o Garvan Institute of Medical Research, L6, 384 Victoria Street, Darlinghurst, Australia NSW 2010 (610) 2 9295 8359 (610) 292-95 8181 (FAX) [email protected] www.agsa-geneticsupport.org.au 1,2,3,4,7 Genetic factsheets, newsletters, resource info annual

Genitalia, Ambiguous AMBIGUOUS GENITALIA SUPPORT NETWORK (AGSN) PO Box 313 Clements, CA 95227 (209) 727-0313 2,3,4 English

Gilford Syndrome See: Progeria

Giroux-Barbeau Syndrome See: Ichthyosis

Glaucoma GLAUCOMA RESEARCH FOUNDATION 251 Post St. Ste. 600 San Francisco, CA 94108 (800) 826-6693 (415) 986-3162 (415) 986-3763 [email protected] www.glaucoma.org 1,2,4,6,7,8 English, Spanish

Glucosyl Cerebroside Lipidosis See: Gaucher Disease

Glutaric Aciduria, Type I INTERNATIONAL ORGANIZATION OF GLUTARIC ACIDEMIA Cay Welch 9638 Rt 22 Highway Blairsville, PA 15717 (724) 459-0179 [email protected] 1,2,3,4,6,8,9 English, Spanish

Glutaricaciduria I See: Glutaric Aciduria, Type I

Glutaricaciduria II See: Acidemia, Organic;

Gluten Intolerance GLUTEN INTOLERANCE GROUP Nancy Kloberdanz, Executive Office Assistant 31214 124th Ave SE Auburn, WA 98092 (253) 833-6655 ext 103 (253) 833-6675 [email protected] www.gluten.org 1,2,3,4,5,6,7,8,9 English

Gluten-Sensitive Enteropathy See: Celiac Disease; Celiac Sprue; Gluten Intolerance

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources

5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

eparent.com | EP MAGAZINE • January 2017 17

National Resources for Specific Disabilities

Glycogen Storage Diseases

Guillain-Barre Syndrome

Hearing Impairments

ASSOCIATION FOR GLYCOGEN STORAGE DISEASE Iris Ferrecchia PO Box 896 Durant, IA 52747 (563) 514-4022 (563) 514-4022 (FAX) [email protected] www.agsdus.org 1,2,3,4,6,8 English only

GBS/CIDP FOUNDATION INTERNATIONAL The Holly Building 104-1/2 Forrest Avenue Narberth, PA 19072 (866) 224-3301 (866) 224-3301 (610) 667-7036 (FAX) www.gbs-cidp.org

Glycogenoses

See: Myasthenia Gravis

GBS/CIDP FOUNDATION OF CANADA Donna Hartlen GBS/CIDP Foundation of Canada, 3100 Garden St., PO Box 80060 RPO Rossland Garden Whitby, ON L1R 0H1 (647) 560-6842 [email protected] gbs-cidp.org/Canada 1,2,3,4,5,6,8 English, French

Gonadal Dygenesis (45, X)

Gunther Porphyria

See: Turner Syndrome

See: Porphyria

Granuloma, Eosinophilic

Hailey-Hailey Disease

See: Histiocytosis

See: Ichthyosis

Granulomatous Disease, Chronic

Hallerman-Streiff Syndrome

ALEXANDER GRAHAM BELL ASSOCIATION FOR THE DEAF AND HARD OF HEARING (AG BELL) 3417 Volta Place NW Washington, DC 20007 (202) 337-5220 (202) 337-5221 (202) 337-8314 (FAX) [email protected] www.agbell.org 1,2,3,4,5,6,7 Spanish/Scholarship program AMERICAN SOCIETY FOR DEAF CHILDREN Cheri Dowling 800 Florida Avenue, NE #2047 Washington, DC 20002-3695 (800) 942-2732, OR [email protected] www.deafchildren.org 1,2,3,4,6,7 English AMERICAN SPEECHLANGUAGE, HEARING ASSOCIATION 2200 Research Blvd #235 Rockville, MD 20850 (301) 296-5700 (800) 498-2071 (301) 296-8590 (FAX) [email protected] www.asha.org 1,2,4,5,6,7,8 AUDITORY-VERBAL INTERNATIONAL, INC. (AVI) Scott Smiley 2121 Eisenhower Ave., Suite 402 Alexandria, VA 22314 (703) 739-1049 (703) 739-0874 (703) 739-0395 (FAX) [email protected] www.auditory-verbal.org GALLAUDET UNIVERSITY Dan Wallace (800) Florida Avenue, NE Washington, DC 20002 (202) 651-5000 (202) 651-5704 (FAX) [email protected] gallaudet.edu 2,3,4,5,6,8,9 English HEARING HEALTH FOUNDATION Nadine Dehgan 363 7th Avenue, 10th Floor New York, NY 10001 (212) 257-6140 (212) 257-6139 (FAX) [email protected] HHF.org English LEAD LINE James D. Boswell House Ear Institute 2100 W Third St, 5th Floor Los Angeles, CA 90057 (213) 989-6701 (213) 989-7473 (FAX) [email protected] www.hei.org 1,2,3 English, Spainish

See: Glycogen Storage Diseases

Glycosphingolipidoses See: Tay-Sachs Disease

Goldenhar Syndrome See: Craniofacial Disorders

Goldflam Disease

CHRONIC GRANULOMATOUS DISEASE ASSOCIATION INC Mary Hurley 2616 Monterey Rd San Marino, CA 91108 (626) 441-4118, OR [email protected] www.cgdassociation.org 2,3,4,6,7,8,9 English

Graves Disease

Guillain-Barr Syndrome

See: Craniofacial Disorders; Short Stature

Hallopeau-Siemens Disease See: Epidermolysis Bullosa, Dystrophic

Hand-Schuller-Christian Syndrome See: Histiocytosis

Hand-Shoulder Syndrome

See: Thyroid Disorders

See: Reflex Sympathetic Dystrophy Syndrome\

Groenblad-Strandberg Syndrome

Harlequin Ichthyosis

See: Pseudoxanthoma Elasticum (PXE)

Growth Disorders HUMAN GROWTH FOUNDATION Patricia Costa 997 Glen Cove Ave, Suite 5 Glen Head, NY 11545 (800) 451-6434 (516) 671-4041 (516) 671-4055 (FAX) www.hgfound.org 1,2,3,4,5,6,7,8 English

Growth Retardation, Intrauterine See: Growth Disorders

Guerin-Stern Syndrome See: Arthrogryposis Multiplex Congenita

See: Ichthyosis

Hay-Wells Syndrome See: Cleft Palate; Craniofacial Disorders; Deaf-Blind; Ectodermal Dysplasias; Hearing Impairments; Visual Impairments

Head Injury See: Brain Injury

Health, Dental Medical, Dermatology, Ob/Gyn, Genetics, Eyes, Hearing, Orthopedics NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS Mary Fete, Executive Director 6 Executive Drive, Suite 2 Fairview Heights, IL 62208-1360 (618) 566-2020 (618) 566-4718 (FAX) [email protected] www.nfed.org 1,2,3,4,6,7,8,9 English

18 January 2017 • EP MAGAZINE | eparent.com

SELF HELP FOR HARD OF HEARING PEOPLE / COCHLEAR IMPLANT ASSOCIATION INC. Terry Portis 7910 Woodmont Ave, Suite 1200 Bethesda, MD 20814 (301) 657-2248 (301) 913-9413 (FAX) www.hearingloss.org 1,2,3,4,5,6,7 English TELECOMMUNICATIONS FOR THE DEAF AND HARD OF HEARING, INC (TDI) Claude Stout 8630 Fenton Street, Suite 121 Silver Spring, MD 20910 (301) 563-9112 [email protected] www.TDIforAccess.org 1,2,3,4,6,7 English, American Sign Language THE LEARNING TO LISTEN FOUNDATION 4001 Leslie Street Toronto, ON M2K 1E1 (416) 756-6000 (416) 491-1230 (416) 491-7215 (FAX) [email protected] www.nygh.on.ca 1,2,3,4,6 Auditory-verbal services for children who are deaf NATIONAL CUED SPEECH ASSOCIATION (NCSA) Sarina Roffe 1300 Pennsylvania Ave NW Suite 190-713 Washington, DC 20004 (800) 459-3529 (800) 459-3529 [email protected] www.cuedspeech.org 1,2,3,4,5,6,7 Maximizing communication for children by developing language THE STARKEY HEARING FOUNDATION HEAR NOW PROGRAM 6700 Washington Ave. S Eden Prairie, MN 55344 (800) 328-8602 (952) 947-4997 (FAX) [email protected] www.starkeyhearingfoundation.org 1,2,7 Accepts tax-deductible donations of used hearing aid

Hearing Loss BETTER HEARING INSTITUTE Carole Rogin 1444 I St., NW, Suite 700 Washington, DC 20005 (202) 449-1100 (202) 216-9646 (FAX) [email protected] www.betterhearing.com 1,2,4,7 English THE CANADIAN HEARING SOCIETY Karen MacKenzie 271 Spadina Rd Toronto, ON M5R 2V3 (877) 347-3427 (877) 216-7310 (416) 928-2506 (FAX) [email protected] www.chs.ca 1,2,3,4,5,6,7 English, French

Heart Disease and Stroke AMERICAN HEART ASSOCIATION 7272 Greenville Avenue Dallas, TX 75231 (214) 265-9511 (800) AHA-USA1 [email protected] English, Spanish

Heart Disorders NATIONAL HEART, LUNG, & BLOOD INSTITUTE INFORMATION CENTER PO Box 30105 Bethesda, MD 20824-0105 (301) 592-8573 (800) 877-8339 (301) 592-8563 (FAX) [email protected] www.nhlbi.nih.gov 1,2,8 English, Spanish CHASER - CONGENITAL HEART ANOMALIES, SUPPORT, EDUCATION, RESOURCES Anita Myers 2112 N. Wilkins Rd Swanton, OH 43558 (419) 825-5575 (419) 825-2880 (FAX) [email protected] www.csun.edu/~hcmth011/chaser /chaser-news.html 1,2,3,4,6,7,8,9 English

Heart Disorders in Children KIDS WITH HEART NATIONAL ASSOCIATION FOR CHILDREN’S HEART DISORDERS, INC. Michelle Rintamaki 1578 Careful Drive Green Bay, WI 54304 (800) 538-5390 (800) 538-5390 (FAX) [email protected] www.kidswithheart.org 2,3,4,7,9 English and some Spanish

Hemangioma & Vascular Malformations THE NATIONAL ORGANIZATION OF VASCULAR ANOMALIES (NOVA) Karla Hall 8711 Six Forks Road PMB 126 Raleigh, NC 27615 (419) 425-1589 (419) 425-1589 (FAX) [email protected] www.novanews.org 1,2,3,4,5,6,7 English with some spanish

Hemidysplasia, Unilateral See: Ichthyosis

Hemihypertrophy See: Beckwith-Wiedeman Syndrome

Hemiplegia, Alternating, Dystonia, Seizure

Hemorrhagic Nodular Purpura

ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION (AHCF) Lynn Egan 2000 Town Center, Suite 1900 Southfield, MI 48075 (650) 365-5436 (650) 796-1910 (650) 365-5436 (FAX) [email protected] www.ahckids.org 1,2,3,4,6,7,8,9 English, Google translate for others

See: Fabry Disease

Hemiplegia, Hemiplegic Cerebral Palsy, Pediatric Stroke

hemorrhagic telangiectasia, hereditary (HHT) HHT FOUNDATION INTERNATIONAL, INC. Nicole Schaefer PO Box 329 Monkton, MD 21111 (410) 357-9932 (410) 357-0655 (FAX) [email protected] www.hht.org 1,2,3,4,6,7,8 English and some Spanish

Hepatic Ductular Hypoplasia, Syndromatic

CHILDREN’S HEMIPLEGIA AND STROKE ASSOCIATION, CHASA Nancy Atwood Suite 305, PMB 149 4101 W. Green Oaks Arlington, TX 76016 817-492-4325 [email protected] www.chasa.org 2,3,4,5,6,7 English

See: Alagille Syndrome

Hemispherectomy

Hereditary nonpolyposis colorectal cancer

See: Rasmussen Syndrome

Hemolytic Anemia See: Cooley Anemia

Hemolytic-Uremic Syndrome See: Kidney Disorders

Hemophagocytic Lymphohistiocytosis See: Histiocytosis

Hemophilia NATIONAL HEMOPHILIA FOUNDATION Richard Metz 7 Penn Plaza Suite 1204 New York, NY 10001 (212) 328-3700 (212) 328-3777 (FAX) [email protected] www.hemophilia.org 1,2,5 Spanish materials WORLD FEDERATION OF HEMOPHILIA Claudia Black 1425 Rene Levesque Blvd. W. Ste. 1010 Montreal, QC H3G 1T7 (514) 875-7944 (514) 875-8916 (FAX) [email protected] www.wfh.org 1,2,4,6,7 Worldwide referrals, guide for travelers

Hepatophosphorylase Deficiency Glycogenosis See: Glycogen Storage Diseases; Muscular Dystrophy

Hereditary Leptocytosis See: Cooley Anemia; Thalassemia Major

See: AIDS

Hodgkin Disease See: Leukemia

Holoprosencephaly THE CARTER CENTERS FOR BRAIN RESEARCH IN HOLOPROSENCEPHALY AND RELATED MALFORMATIONS Dr. Nancy Clegg Texas Scottish Rite Hospital for Children, Department of Neurology 2222 Welborn St. Dallas, TX 75219 (214) 559-8411 (214) 559-8383 (FAX) [email protected] www.carterdatabase.org/hpe 2,3,4,6,7,9 English, some Spanish

Human Immunodeficiency Virus See: AIDS

Hunter Syndrome See: Mucopolysaccharidoses Tay-Sachs Disease

Hurler Syndrome

See: Colon Cancer, Hereditary

See: Mucopolysaccharidoses Tay-Sachs Disease

Hermansky-Pudlak Syndrome

Hurler/Scheie Syndrome

HERMANSKY-PUDLAK SYNDROME NETWORK INC Donna Appell One South Rd. Oyster Bay, NY 11771-1905 (800) 789-9HPS (516) 922-4022 (516) 624-0640 (FAX) [email protected] www.hpsnetwork.org 1,2,3,6,7,8,9 English, Spanish

See: Mucopolysaccharidoses Tay-Sachs Disease

Hutchinson-Gilford Syndrome

NATIONAL HYDROCEPHALUS FOUNDATION Debbi Fields 12413 Centralia Rd. Lakewood, CA 90715-1623 (562) 924-6666 [email protected] www.nhfonline.org 1,2,3,4,6,7,8. Quarterly newsletter with research information, personal stories and more THE GUARDIANS OF HYDROCEPHALUS RESEARCH FOUNDATIONNATIONAL HEADQUARTERS Marie Fischetti 2640 E 28 St Brooklyn, NY 11235-2473 (718) 743-9650 (718) 743-9650 (FAX) [email protected] 1,2,4,8

Hydrocephalus, Obstructive

Hyperuricemia, Hereditary See: Lesch-Nyhan Disease

Hyperuricemia Choreoathetosis SelfMutilation Syndrome See: Lesch-Nyhan Disease

Hypoerythemia, Progressive See: Anemia, Aplastic

Hypogammaglobulinemia See: Immune Disorders

Hypomyelination See: Myelin Disorders

Hypopigmentation See: Albinism and Hypopigmentation; Vitiligo

See: Dandy-Walker Syndrome

Hypoplasia of the Corpus Callosum

Hyperammonemia See: Urea Cycle Disorders

See: Agenesis of the Corpus Callosum

Hyperbilirubinemia

Hypoplastic Anemia

See: Kernicterus

See: Anemia, Aplastic

Hypercalcemia Syndrome, Infantile, Idiopathic

Hypoplastic Left Heart Syndrome

See: Williams Syndrome

See: Heart Disorders

Hypercalcemia-Supravalvar Aortic Stenosis

Hypospadius/HyperteloriSm Syndromes

See: Williams Syndrome

See: Opitz Syndrome

Hypercystinuria

Hypothyroid Myopathy

See: Cystinuria

See: Muscular Dystrophy; Thyroid Disorders

Hutchinson-Weber - Peutz Syndrome

Hyperglycinemia with Ketoacidosis and Leukopenia

Hypothyroidism, Congenital

See: Colon Cancer, Hereditary

See: Acidemia, Organic

Hyberbarics

Hyperlexia

See: Intestinal PseudoObstruction Syndrome

INTERNATIONAL HYPERBARICS ASSOCIATION Samir Patel 15810, East Gale Avenue #178 Hacienda Heights, CA 91745 (562) 906-8888 (877) IHA-USA1 [email protected]

Histiocytosis

Hydrocephalus

AMERICAN HYPERLEXIA ASSOCIATION Phyllis Kuperman PO Box 335 195 W. Spangler Suite B, Flossmoor, IL 60422 (773) 216-3333 [email protected] www.hyperlexia.org English

Histiocytosis Association Jeffrey M. Toughill 332 North Broadway Pitman, NJ 8071 (856) 589-6606 (856) 589-6614 (FAX) [email protected] www.histio.org 1,2,3,4,6,8,9 English, Spanish

HYDROCEPHALUS ASSOCIATION Megeen White, RN 4340 East West Highway, Ste 905 Bethesda, MD 20814 (888) 598-3789,14 (301) 202-3811 (301) 202-3813 (FAX) [email protected] www.hydroassoc.org 1,2,3,4,5,6,7,8 English, Spanish

Hers Disease See: Glycogen Storage Diseases; Muscular Dystrophy

Hirschsprung Disease

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources

HIV

5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

See: Progeria

See: Growth Disorders; Thyroid Disorders

Hypotonia, Benign Congenital

Hyperlipodema See: Autoimmune Disorders

Hyperoxaluria See: Oxalosis and Hyperoxaluria

Hypertelorism/ Hypospadius Syndromes See: Opitz Syndrome

Hyperthermia of Anesthesia See: Malignant Hyperthermia

Hyperthyroid Myopathy See: Muscular Dystrophy; Thyroid Disorders

See: Spinal Muscular Atrophy

I-Cell Disease See: Mucopolysaccharidoses Tay-Sachs Disease

Ichthyosis FIRST: FOUNDATION FOR ICHTHYOSIS AND RELATED SKIN TYPES Jean Pickford 2616 N. Broad Street Colmar, PA 18915 (800) 545-3286 (215) 997-9400 (215) 997-9403 (FAX) [email protected] www.firstskinfoundation.org 1,2,3,4,5,7,8,9 Spanish

IdiopathicThrombocytopenia Purpura (ITP) See: Purpura, Idiopathic Thrombocytopenia (ITP)

Idiosyncratic Porphyria See: Porphyria

eparent.com | EP MAGAZINE • January 2017 19

National Resources for Specific Disabilities

Ileostomy See: Ostomy

Illness, Terminal CHILDREN’S HOSPICE INTERNATIONAL 500 Montgomery Street, Suite 400 Alexandria, VA 22314 (703) 684-0330 (800) 24C-HLID (703) 684-0226 (FAX) [email protected] www.chionline.org 2,4,6

Immune Disorders IMMUNE DEFICIENCY FOUNDATION 110 West Road, Suite 300 Towson, MD 21204 (800) 296-4433 (410) 321-6647 (410) 321-9165 (FAX) [email protected] www.primaryimmune.org 1,2,4,6,7,8,9 English, Spanish

Imperforate Anus See: Anorectal Malformations

Inclusion Body Myostisis See: Immune Disorders

Incontinence SIMON FOUNDATION FOR CONTINENCE Elizabeth A. LaGro PO Box 815 Wilmette, IL 60091 (847) 864-3913 (847) 864-9758 (FAX) [email protected] http://www.simonfoundation.org 1,2,4,6,7 English NATIONAL ASSOCIATION FOR CONTINENCE Steven Gregg PO Box 1092 Charleston, SC 29464 (800) BLADDER [email protected] www.nafc.org 1,2,7, English, Spanish

Incontinentia Pigmenti INCONTINENTIA PIGMENTI INTERNATIONAL FOUNDATION Laura M Richter, President & CEO 78 Saint Moritz Drive Erial, NJ 08081 (Mailing) 30 E 72th St, 16th Fl New York, NY 10021 (212) 452-1231 (212) 452 1231 (FAX) [email protected] www.ipif.org 1,2,3,4,7,8 English, Spanish, French, Italian, Portuguese.

India Rubber Skin See: Ehlers-Danlos Syndrome

Infantile Facio-ScapuloHumeral Muscular Dystrophy See: Facio-Scapulo-Humeral Muscular Dystrophy

Infantile Hypercalcemia Syndrome, Idiopathic

Johanson-Blizzard Syndrome

See: Williams Syndrome

See: Craniofacial Disorders;Growth Disorders; Hearing Impairments; Short Stature

Infantile Spasms See: Epilepsy

Intestinal Neuronal Dysplasia See: Intestinal PseudoObstruction Syndrome

Intestinal Polyposis See: Colon Cancer, Hereditary

Intestinal PolyposisCutaneous Pigmentation Syndrome See: Colon Cancer, Hereditary

PARENTS OF INFANTS AND CHILDREN WITH KERNICTERUS (PICK) Mitchell Dvorak PO Box 10744 White Bear Lake, MN 55110 (312) 274-9695 www.PICKonline.org 1,2,3,4,6,7,8,9 English, Spanish

AMERICAN ASSOCIATION OF KIDNEY PATIENTS Gary Green 2701 N. Rocky Point Drive Suite 150 Tampa, FL 33607 (800) 749-2257 (813) 636-8122 (FAX) [email protected] http://www.aakp.org 1,2,4,5,6,7,8 AMERICAN KIDNEY FUND 11921 Rockville Pike, Suite 300 Rockville, MD 20852 (800) 795-3226 (301) 881-0898 (FAX) www.kidneyfund.org KIDNEY FOUNDATION OF CANADA Wim Wolfs 300-5165 Sherbrooke St W Montreal, QC H3X 2H9 (514) 369-4806 (800) 361-7494 (514) 369-2472 (FAX) [email protected] www.kidney.ca 1,2 French/Chinese/Punjabi materials PKD materials available NATIONAL KIDNEY FOUNDATION Bryan N. Becker 30 E. 33rd St. New York, NY 10016 (800) 622-9010 (855) NKF-CARES (212) 689-9261 (FAX) [email protected] www.kidney.org 1,2,4,5,7,8 PKD FOUNDATION Dave Switzer 1001 E. 101st Terrace, Suite 220 Kansas City, MO 64131 (800) PKD-CURE (753-2873) (816) 931-2600 (816) 931-8655 (FAX) [email protected] www.pkdcure.org 9

Ketoaciduria

Kidney Stones

See: Maple Syrup Urine Disease

See: Cystinuria

Ketotic Hyperglycinemia

Klinefelter Syndrome

See: Acidemia, Organic

49 XXXXY SYNDROME ASSOCIATION Elise Watzka 870 Miranda Green Palo Atto, CA 94306 (650) 941-2408 [email protected] klinefeltersyndrome.org/49er.htm 1,3,4,6,9 English AXYS (FORMERLY KLINEFELTER SYNDROME & ASSOCIATES, INC. - KS&A) Serving all X and Y chromosome variations Robert Miller PO BOX 861 Mendenhall, PA 19357 (303) 400-9040 (888) 999-9428 [email protected] www.axysgenetic.org 1,2,3,4,5,6,7,8,9 Spanish, English, Cantonese, Chinese, Greek, Hebrew, Mandarin

Joubert Syndrome JOUBERT SYNDROME & RELATED DISORDERS FOUNDATION (JSRDF) Stephen Mack 414 Hungerford Dr, Suite 252 Rockville, MD 20850 (614) 864-1362 (614) 864-1362 (FAX) [email protected] www.jsfrcd.org 1,2,3,4,6,7,9 English

Intestinal PseudoObstruction Syndrome Gastroparesis, GERD, Achalasia

Juvenile GoutChoreoathetosis-Mental Retardation Syndrome

ASSOCIATION OF GASTROINTESTINAL MOTILITY DISORDERS, INC. (AGMD) Maryangela DeGrazia-DiTucci 12 Roberts Drive Bedford, MA 1730 (781) 275-1300 (781) 275-1304 (FAX) [email protected] www.agmd-gimotility.org 1,2,3,4,6,7 English

Kallman Syndrome

Intestinal PseudoObstruction, Hirschsprung’s Disease INTERNATIONAL HYDRANENCEPHALY SUPPORT GROUP Lynne Trease 85667 516th Avenue Clearwater, NE 68726 (402) 485-2229 hydranencephaly.com 1,2,6,7,8,9 English

Intrahepatic Bile Duct Paucity See: Alagille Syndrome

Isovaleric Acidemia (IVA) See: Acidemia, Organic

Isovaleryl-CoA Carboxylase Deficiency

See: Lesch-Nyhan Disease See: Cleft Palate; Growth Disorders; Hearing Impairments; Kidney Disorders

Kast Syndrome See: Cancer;

Kearns-Sayre Syndrome See: Heart Disorders; Mitochondrial Disorders; Retinitis Pigmentosa; Visual Impairments

Kernicterus

Kidney Diseases, Hereditary See: Cystinosis; Kidney Disorders; Oxalosis and Hyperoxaluria

See: Acidemia, Organic

Jansky-Biel schowsky Disease See: Batten Disease; Tay-Sachs Disease

Jeghers Syndrome See: Colon Cancer, Hereditary

Jervell and Lange-Nielsen Syndrome See: Hearing Impairments; Long Q-T Syndrome

Jeune Syndrome See: Growth Disorders

20 January 2017 • EP MAGAZINE | eparent.com

Kidney Disorders

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

Klippel-Trenaunay Syndrome See: Nevi, Giant Congenital; Sturge-Weber Syndrome

Krabbe Disease See: Leukodystrophy, Tay-Sachs Disease

Kugelberg-Welander Disease See: Spinal Muscular Atrophy

Kussmaul-Landry ParaLysis See: Guillain-Barr Syndrome

Kyphosis See: Scoliosis

Lactate Dehydrogenase Deficiency See: Muscular Dystrophy

Lactic Acidosis See: Glutaric Aciduria, Type I; Metabolic Disorders

Lambert-Eaton Syndrome See: Muscular Dystrophy

Landouzy-Dejerine Muscular Dystrophy See: Facio-Scapulo-Humeral Muscular Dystrophy

Landry Ascending Paralysis See: Guillain-Barr Syndrome

Langerhans Cell Histiocytosis See: Histiocytosis

Le Jeune Syndrome See: Cri Du Chat Syndrome

Learning Disabilities LEARNING DISABILTIES ASSOCIATION OF NEW BRUNSWICK Provincial Office 203-403 Rue Regent St. Fredericton, NB E3B 3X6 (506) 459-7852 (506) 455-9300 (FAX) [email protected] NORQUEST COLLEGE, LEARNING SUPPORT SERVICES Suzanne Panteluk 10215-108 St NW, Room 104, Main Building Edmonton, AB T5J 1L6 (780) 644-6000 (866) 534-7218 (780) 644-6013 (FAX) suzanne.panteluk[email protected] www.norquest.ab.ca English ALLEN INSTITUTE Peter Love 85 Jones St. PO Box 100 Amston, CT 06248 (860) 228-6962 [email protected] 2

LEARNING DISABILITIES ASSOCIATION OF AMERICA Mary-Clare Reynolds 4156 Library Rd. Pittsburgh, PA 15234-1349 (412) 341-1515 (412) 344-0224 (FAX) [email protected] www.ldaamerica.org 1,2,4,5,6,7, English, Spanish LEARNING DISABILITIES ASSOCIATION OF NEW YORK CITY Donald Fann 237 W. 35th Street, Suite 1101 New York, NY 10001 (212) 645-6730 (212) 924-8896 (FAX) [email protected] www.ldanyc.org 4 Spanish, English NATIONAL CENTER FOR LEARNING DISABILITIES Dr. Sheldon Horowitz 32 Laight Street, Second Floor New York, NY 10013 (212) 545-7510 (888) 575-7373 (212) 545-9665 (FAX) [email protected] www.ld.org www.GetReadytoRead.org www.RTINetwork.org www.LDNavigator.ncld.org 1,2 BENETECH / BOOKSHARE 480 S. California Ave, Suite 201 Palo Alto, CA 94306-1609 (650) 644-3400 (650) 475-1066 (FAX) [email protected] www.benetech.org

Leptocytosis, Hereditary See: Cooley Anemia

Leptomeningeal Angiomatosis See: Sturge-Weber Syndrome

Lesch-Nyhan Disease LESCH-NYHAN DISEASE REGISTRY Lowell Anderson School of Medicine, Psychiatry 1 Washington Square Village Apt 14-A New York, NY 10012 (212) 420-0622 www.lndinfo.org 1,2,3 English

Letterer-Siwe Disease See: Histiocytosis

Leukemia LEUKEMIA & LYMPHOMA SOCIETY Information Resource Center 3 International Drive, Suite 200 Rye Brook, NY 10573 (914) 949-5213 (914) 949-6691 (FAX) [email protected] www.lls.org 1,2,3,4,5,6,7,8 Spanish, French

Leukodystrophy

Lobstein Disease, Type I

Lupus Erythematosis

Macular Diseases

UNITED LEUKODYSTROPHY FOUNDATION Bobbi Burgstone 224 N. 2nd St, Suite 2 DeKalb, IL 60115 (815) 748-3211 (815) 748-0844 (FAX) [email protected] www.ulf.org 1,2,3,4,6,7,8,9 Limited Spanish/French materials

See: Osteogenesis Imperfecta

SLE LUPUS FOUNDATION INC. Margaret G. Dowd 275 Madison Avenue, 10th Floor New York, NY 10016 (212) 218-2840 (800) 74L-UPUS (212) 545-1843 (FAX) [email protected] www.lupusny.org 1,2,3,4,5,6,7,8 English, Spanish materials LUPUS CANADA Leanne Mielczarek 615 Davis Drive, Suite 30 Newmarket, ON L3Y 2R2 (905) 235-1714 (800) 661-1468 (905) 235-1715 (FAX) [email protected] www.lupuscanada.org 1,2,4,5,6,7,8,9 English, French LUPUS FOUNDATION OF AMERICA Health Educator 2000 L Street NW, Suite 410 Washington, DC 20036 (800) 558-0121 (202) 349-1155 (202) 349-1156 (FAX) [email protected] www.lupus.org 1,2,3,4,5,6,7,8,9 English, some publications in Spanish

ASSOCIATION FOR MACULAR DISEASES Nick Stevenson 210 E 64th St, 8th floor New York, NY 10065 (212) 605-3719 (212) 605-3795 (FAX) [email protected] www.macula.org 1,2,4,6,7 English MACULAR DEGENERATION FOUNDATION Liz Trauernicht PO Box 531313 Henderson, NV 89053 (888) 633-3937 (702) 450-2908 (702) 450-3396 (FAX) [email protected] www.eyesight.org 1,2,7,8,9 English

Leukodystrophy, Metachromatic See: Leukodystrophy, Tay-Sachs Disease

Limb-Girdle Muscular Dystrophy See: Muscular Dystrophy

Limit Dextrinosis See: Glycogen Storage Diseases; Muscular Dystrophy

Lipidosis, Cerebroside See: Gaucher Disease

Lipofuscinoses, Neuronal Ceroid See: Batten Disease

Lissencephaly - All Neuronal Migration Disorders LISSENCEPHALY NETWORK, INC. Dianna Fitzgerald 10408 Bitterroot Ct. Fort Wayne, IN 46804 (281) 338-2341 (219) 432-4310 (FAX) 1,2,3,4,6,8,9 English, Spanish, German, Greek

Liver Disorders AMERICAN LIVER FOUNDATION Jonathan Martin, National Director of Programs 39 Broadway, Suite 2700 New York, NY 10006 (800) 465-4837 (212) 668-1000 (212) 483-8179 (FAX) [email protected] www.liverfoundation.org 2,4,5,6,7,8 English; selected information provided in Spanish, Chinese, Korean CANADIAN LIVER FOUNDATION Billie Potkonjak 3100 Steeles Ave East, Ste 801 Markham, ON L3R 8T3 (800) 563-5483 (416) 491-3353 (905) 752-1540 (FAX) [email protected] www.liver.ca/Home.aspx 2,5,8 English, French and Chinese materials

Long Q-T Syndrome Acid Maltase Deficiency SUDDEN ARRHYTHMIA DEATH SYNDROMES (SADS) FOUNDATION Alice Lara 4527 South 2300 East, Suite 104 Salt Lake City, UT 84117 (801) 272-3023 (801) 505-0282 (FAX) [email protected] www.sads.org 1,2,3,4,6,8,9 English, Spanish materials

Lordosis See: Scoliosis

Lowe Syndrome LOWE SYNDROME ASSOCIATION Lisa Waldbaum PO Box 417 Chicago Ridge, IL 60415 (216) 630-7723 [email protected] www.lowesyndrome.org 1,2,3,6,8,9 English

Lowe-Bickel Syndrome See: Lowe Syndrome

Lowe-Terry-Machlachlan Syndrome See: Lowe Syndrome

Lung Diseases AMERICAN LUNG ASSOCIATION Bernadette A. Toomey 1301 Pennsylvania Avenue, NW Suite 800 Washington, DC 20004 (202) 785-3355 (800) LUN-GUSA (202) 452-1805 (FAX) www.lungusa.org AMERICAN LUNG ASSOCIATION Chrystal V. Headen 55 W. Wacker Drive, Suite 1150 Chicago, IL 60601 (800) LUNGUSA (800) 548-8252 (202) 452-1805 (FAX) [email protected] www.lungusa.org 1,2,5,6,7,8,9 English, Spanish ONTARIO LUNG ASSOCIATION John Chenery 401-18 Wynford Drive Toronto, ON M3C 0K8 (888) 344-LUNG (5864) (416) 864-9916 (FAX) [email protected] www.on.lung.ca

Lymphedema NATIONAL LIYMPHEDEMA NETWORK Saskia R.J. Thiadens R.N. 2288 Fulton Street, Suite 307 Berkeley, CA 94704 (800) 541-3259 (510) 809-1660 (510) 809-1699 (FAX) [email protected] www.lymphnet.org 2,4

Lymphohistiocytosis, Familial Erythrophagocytic

Maffucci Syndrome See: Cancer

Male Sex Chromosome Disorders See: Klinefelter Syndrome

Malignant Hyperthermia MALIGNANT HYPERTHERMIA ASSOCIATION OF UNITED STATES PO Box 1069 Sherburne, NY 13460 (607) 674-7901 (607) 674-7910 (FAX) [email protected] www.mhaus.org 1,2,4,6,9 English, Spanish

Mandibulofacial Dysostosis See: Nager and Miller Syndromes

Mannosidosis See: Tay-Sachs Disease

See: Histiocytosis

Maple Syrup Urine Disease

Lymphohistiocytosis, Hemophagocytic

MAPLE SYRUP URINE DISEASE FAMILY SUPPORT GROUP Sandy Bulcher 9517 Big Bear Ave Powell, OH 43065 (740) 972-5619 [email protected] www.msud-support.org 1,2,3,6,7,8 English, some Spanish

See: Histiocytosis

Lymphohistiocytosis, Malignant See: Cancer; Histiocytosis

Lymphoma See: Leukemia

Marden-Walker Syndrome

Lysosomal Storage Diseases

See: Cleft Palate; Growth Disorders

See: Fabry Disease; Gaucher Disease; Mucopolysaccharidoses Niemann-Pick Disease; Pompe Disease; Tay-Sachs Disease

Macular Degeneration See: Retinitis Pigmentosa

Liver Phosphorylase Deficiency See: Glycogen Storage Diseases; Muscular Dystrophy

eparent.com | EP MAGAZINE • January 2017 21

National Resources for Specific Disabilities

Marfan Syndrome

Meningococcal Disease

GENETIC AORTIC DISORDERS ASSOCIATION CANADA Chrisanne Campos Central Plaza PO 128 Queen St. S. PO Box 42257 Mississauga, ON L5M 4Z0 (905) 826-3223 (866) 722-1722 (905) 826-2125 (FAX) [email protected] www.gadacanada.ca 1,2,4,6,8,9 English, French

THE NATIONAL MENINGITIS ASSOCIATION, INC. (NMA) PO Box 725165 Atlanta, GA 31139 (866) 366-3662 (866) FON-ENMA (877) 703-6096 (FAX) [email protected] www.nmaus.org

Marker x syndrome

Mental Health

See: Fragile X Syndrome

Marteaux-lamy syndrome See: Mucopolysaccharidoses Tay-Sachs Disease

Mast Cell Disease THE MASTOCYTOSIS SOCIETY, INC. Valerie M. Slee, RN, BSN PO Box 129 Hastings, NE 68902-0129 (909) 206-2786 [email protected] www.tmsforacure.org 1,2,3,4,5,6,7,8 English, Spainish

McArdle Disease See: Glycogen Storage Diseases; Muscular Dystrophy

Mediterranean Anemia See: Cooley Anemia

Medulloblastoma, Hereditary See: Brain Tumors

Meerkeren-Ehlers-Danlos Syndrome See: Ehlers-Danlos Syndrome

Meige Disease See: Lymphedema

Melanoleucoderma Ectodermal Dysplasias See: Colon Cancer, Hereditary

Melas Syndrome See: Growth Disorders; Mitochondrial Disorders

Melnick Needles Syndrome See: Growth Disorders

Meniere’s Syndrome See: Balance Disorders and Dizziness

Meningeal Capillary Angiomatosis See: Sturge-Weber Syndrome

Menkes Disease See: Liver Disorders; Metabolic Disorders

THE GEORGE WASHINGTON UNIVERSITY Dr. Juliana Taymans 2121 Eye Street, NW Washington, DC 20052 (202) 994-1000 [email protected] www.heath.gwu.edu 1,2 English FEDERATION OF FAMILIES FOR CHILDREN’S MENTAL HEALTH Sandra Spencer 12320 Parklawn Drive Rockvillie, MD 20852 (201) 403-1901 (201) 403-1909 (FAX) [email protected] www.ffcmh.org 2,4,5,6,7 Spanish material

Mental Illiness FRIENDS’ HEALTH CONNECTION FOR PEOPLE WITH MEDICAL CONDITIONS AND FOR CAREGIVERS Roxanne Black-Weisheit PO Box 114 New Brunswick, NJ 08903 (732) 418-1811 (800) 483-7436 (732) 249-9897 (FAX) [email protected] www.friendshealthconnection.org CANADIAN MENTAL HEALTH ASSOCIATION - NATIONAL OFFICE 1110-151 Slater Street Ottawa, ON K1P 5H3 (613) 745-7750 (613) 745-5522 (FAX) www.cmha.ca 2,4,7 CHILDREN’S HOSPICE INTERNATIONAL Ann Armstrong-Dailey 500 Montgomery Street, Suite 400 Alexandria, VA 22314 (703) 684-0330 [email protected] www.chionline.org FAMILY NETWORK ON DISABILITIES OF FLORIDA, INC. Rich La Belle 2196 Main St Suite K Dunedin, FL 34698 (727) 523-1130 (800) 825-5736 (727) 523-8687 (FAX) [email protected] fndfl.org 1,2,3,4,7 English, Spanish, Kreole

22 January 2017 • EP MAGAZINE | eparent.com

MENTAL HEALTH AMERICA Anisha Imhoff-Kerr 500 Montgomery Street, Suite 820 Alexandria, VA 22314 (703) 684-7722 (800) 969-6642 (703) 684-5968 (FAX) [email protected] www.nmha.org 1,2,4,5,6,7 English, Spanish materials MENTAL HEALTH AMERICA OF COLORADO Laura Cordes 1120 Lincoln Street Suite 1606 Denver, CO 80203 (720) 208-2220 (800) 456-3249 (720) 208-2250 (FAX) [email protected] www.mhacolorado.org 4 English, Spanish NAMI Lynn Borton 3803 N. Fairfax Drive, Suite 100 Arlington, VA 22203 (703) 524-7600 (800) 950-6264HelpLine [email protected] www.nami.org 1,2,4,5,6,7 English, Spanish

Mental Retardation THE ARC OF THE UNITED STATES Peter V. Berns 1825 K Street NW, Suite 1200 Washington, DC 20006 (202) 534-3700 (800) 433-5255 (202) 534-3731 (FAX) www.thearc.org 1,2,3,4,5,6,7,8 English, Spanish materials. VIRGINIA DEPARTMENT OF REHABILITATIVE SERVICES Sherry P. Hailey 8004 Franklin Farms Drive Richmond, VA 23229 (804) 662-7007 (800) 464-9950 (804) 662-9140 (FAX) [email protected] www.vadrs.org 2,3,4

PROFESSIONAL EDUCATION AND RESPITE SERVICE INC Jesse Kurshner 500 West Jubal Early Dr, Ste 210 Winchester, VA 22601 (540) 431 5641 (540) 431 5628 (FAX) [email protected] www.thePERS.com 1,2,3 English VOR (FORMERLY VOICE OF THE RETARDED) Tamie Hopp 836 S. Arlington Heights Rd., #351 Elk Grove Village, IL 60007 (877) 399-4VOR (605) 399-1631 (FAX) [email protected] www.vor.net 1,2,3,4,5,6,7 English AMERICAN ASSOCIATION ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES Doreen Croser 501 3rd Street, NW Suite 200 Washington, DC 20001 (800) 424-3688 (202) 387-1968 (202) 387-2193 (FAX) [email protected] www.aaidd.org 1,2,3,4,5,6,7 French, Spanish NATIONAL ASSOCIATION OF THE DUALLY DIAGNOSED (NADD) Robert J. Fletcher DSW 132 Fair Street Kingston, NY 12401 (800) 331-5362 (845) 331-4336 (845) 331-4569 (FAX) [email protected] www.thenadd.org 1,2,3,4,5,6,7 National, informational, and Regional Confernces NURSES ASSOCIATION (DDNA) Mary Alice Willis 1501 South Loop 288, Suite 104 Denton, TX 76205 (800) 888-6733 (844) 336-2329 (FAX) [email protected] www.ddna.org 1,2,3,4,5,6,7 English

MERRF Syndrome See: Myoclonus; Mitochondrial Disorders

Metabolic Disorders

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

CLIMB Pam Davies Climb Building 176 Nantwich Road, Crewe Cheshire, UK CW2 6BG (084) 524-12173 (084) 524-12174 (FAX) [email protected] www.climb.org.uk 1,2,3,4,5,6,7,8 English THE WORLD LIFE FOUNDATION PO Box 571 Bedford, TX 76095 (800) 289-5433 (800) 289-5433 (817) 285-0216 (FAX) English, Spanish

Metachromatic Leukodystrophy See: Leukodystrophy; Tay-Sachs Disease

Methylmalonic Acidemia See: Acidemia, Organic

Microphthalmia See: Anophthalmia; Visual Impairments

Microsomia, Hemifacial See: Craniofacial Disorders

Migraines See: Hemiplegia, Alternating

Miller Syndrome See: Nager and Miller Syndromes

Miller-Dieker Syndrome See: Lissencephaly

Miller-Fischer Syndrome See: Guillain-Barr Syndrome

Milroy Disease See: Lymphedema

Mitochondrial Disorders THE UNITED MITOCHONDRIAL DISEASE FOUNDATION (UMDF) Janet Owens 8085 Saltsburg Rd, Suite 201 Pittsburgh, PA 15239 (412) 793-8077,107 (888) 317-UMDF (412) 793-6477 (FAX) [email protected] www.umdf.org 1,2,3,4,5,6,7,8,9 English

Mitochondrial Myopathy See: Mitochondrial Disorders; Muscular Dystrophy, DejerineLandouzy

Moebius Syndrome MOEBIUS SYNDROME FOUNDATION Vicki McCarrell PO Box 147 Pilot Grove, MO 65276 (660) 834-3406 (660) 537-5578 (FAX) [email protected] www.moebiussyndrome.com 1,2,3,6,8,9 English

Monosomy X See: Turner Syndrome

Morquio Syndrome See: Mucopolysaccharidoses Tay-Sachs Disease

Morvan Disease See: Syringomyelia

Motor-Sensory Neuropathy, Hereditary See: Charcot-Marie-Tooth Disease

Moyamoya Disease See: Stroke

EAT WELL LIVE WELL BE WELL Jake vitamincandy® was developed with one goal: to provide the world with a sugar free candy that can be enjoyed every day, with added benefits. By providing impeccable and perfectly formulated flavors and delivering them as sugar free candies, Jake vitamincandy® is sure to please anyone’s taste buds!

www.snackswelove.com

National Resources for Specific Disabilities

Mucolipidoses See: Mucopolysaccharidoses Mucolipidosis Type IV; Tay-Sachs Disease

Mucolipidosis Type IV ML4 FOUNDATION Dr. Rebecca Oberman 3500 Piedmont Road SUITE 500 Atlanta, GA 30305 (877) ML4-5459 [email protected] www.ml4.org 1,2,3,6,7,8,9

Mucopolysaccharidoses and Mucolipidosis NATIONAL MPS SOCIETY Laurie J. Turner PO Box 14686 Durham, NC 27709-4686 (919) 806-0101 (207) 843-7040 (919) 806-2055 (FAX) [email protected] www.mpssociety.org 1,2,3,4,6,7,8 English, booklets in Spanish

NATIONAL MULTIPLE SCLEROSIS SOCIETY Shari Mazzella 1000 Elmwood Ave., Suite 900 Rochester, NY 14620-3901 (800) 344-4867 (585) 442-2817 (FAX) [email protected] Msupstateny.org 1,2,4,5,7,8,9 English, Spanish materials

Myasthenia Gravis

Myoclonus

Nemaline Myopathy

MYASTHENIA GRAVIS FOUNDATION OF AMERICA, INC Tor Holtan 355 Lexington Ave, 15th Floor New York, NY 10017 (800) 541-5454 (212) 297-2156 (212) 297-2159 (FAX) [email protected] www.myasthenia.org 1,2,4,5,6,7,8,9 English, Spanish

THE NATIONAL PEDIATRIC MYOCLONUS CENTER Elizabeth D. Tate Southern Illinois University School of Medicine PO Box 19643 Springfield, IL 62794-9643 (217) 545-7635 (217) 545-1903 www.OMSUSA.org 1,2,7,9 English; Also provides info and support on ADD

See: Muscular Dystrophy

Myasthenic syndrome of Lambert-Eaton

Myodenylate Deaminase Deficiency

Muscle Phosphofructokinase Deficiency

See: Charcot-Marie-Tooth Disease

See: Muscular Dystrophy

Myelin Disorders

Myopathies, Congenital

See: Glycogen Storage Diseases; Muscular Dystrophy

THE CANADIAN MYELIN RESEARCH INITIATIVE Wayne Simmons 4330 Spinningdale Ct Mississauga, ON L5M 3J8 (905) 567-5183 (905) 567-9189 (FAX) [email protected] 2,6,7,8,9

See: Myotubular Myopathy, XLinked

Multiple Sulfatase Deficiency See: Hearing Impairments; Ichthyosis; Leukodystrophy; TaySachs Disease

Muscle Phosphorylase Deficiency See: Glycogen Storage Diseases; Muscular Dystrophy

Muscular Atrophy, Peroneal

Mucosulfatidosis

See: Charcot-Marie-Tooth Disease

Myelitis

See: Hearing Impairments; Ichthyosis; Leukodystrophy; TaySachs Disease

Muscular Disorders

Multiple Carboxylase Deficiency

Muscular Dystrophy

THE TRANSVERSE MYELITIS ASSOCIATION Sandy Siegel 1787 Sutter Parkway Powell, OH 43065-8806 (855) 380-3330 (614) 317-4884 [email protected] www.myelitis.org 1,2,3,5,6,7,8,9 English

See: Metabolic Disorders

Multiple Endocrine Neoplasia I See: Diabetes Mellitus; Thyroid Disorders

Multiple Sclerosis MULTIPLE SCLEROSIS SOCIETY OF CANADA 250 Dundas St West, Suite 500 Toronto, ON M5T 2Z5 (800) 268-7582 (416) 922-6065 (416) 922-7538 (FAX) [email protected] www.mssociety.ca 1,2,4,5,6,7,8,9 English, French MULTIPLE SCLEROSIS SOCIETYTHUNDER BAY CHAPTER Office Support 102 79 N. Court St. Thunder Bay, ON P7A 4T7 (807) 344-2944 (807) 346-5923 (FAX) English, French/Finnish reading

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

See: Freeman-Sheldon Syndrome

SOCIETY FOR MUSCULAR DYSTROPHY INFORMATION INTERNATIONAL Linda Dobson S.M.D.I International PO Box 7490 Bridgewater, NS B4V 2X6 (902) 685-3961 (902) 685-3962 (FAX) [email protected] 2,4 English MUSCULAR DYSTROPHY ASSOCIATION Bob Mackle 3300 East Sunrise Drive Tucson, AZ 85718 (520) 529-2000 (800) 572-1717 (520) 529-5300 (FAX) [email protected] www.mda.org 2,4,5,6,7,8,9 English, Spanish MUSCULAR DYSTROPHY FAMILY FOUNDATION Kim Stoneking CAE PO Box 776 Carmel, IN 46082 (317) 615-9140 [email protected] www.mdff.org 1,2,3,4,7 English, Spanish

material 24 January 2017 • EP MAGAZINE | eparent.com

Myelodysplasia See: Anemia, Aplastic

Myeloma INTERNATIONAL MYELOMA FOUNDATION Kelly Coxs 12650 Riverside Dr, Suite 206 N Hollywood, CA 91607-3421 (800) 452-2873 (818) 487-7455 (818) 487-7454 (FAX) [email protected] www.myeloma.org 1,2,3,4,6,7,8 English, Spanish, Italian, German and others

Myeloma, Multiple See: Myeloma

Myelosyringosis See: Syringomyelia

Myoadenylate Deaminase Deficiency See: Muscular Dystrophy

Myopathy, Centronuclear See: Myotubular Myopathy, XLinked; Muscular Dystrophy

Myopathy, Hyperthyroid See: Muscular Dystrophy; Thyroid Disorders

Myophosphorylase Deficiency See: Glycogen Storage Diseases Myositis, Autoimmune

Myotubular Myopathy, XLinked MYOTUBULAR MYOPATHY RESOURCE GROUP Pamela Scoggin 2602 Quaker Dr Texas City, TX 77590 (409) 945-8569 (409) 945-2162 (FAX) [email protected] www.mtmrg.org 2 English

Myxedema See: Thyroid Disorders

N-Acetyl Glutamate Synthetase (NAGS) Deficiency See: Urea Cycle Disorders

Naegeli-FranceschettiJadassohn Syndrome See: Incontinentia Pigmenti

Nager & Miller Syndromes THE FOUNDATION FOR NAGER AND MILLER SYNDROMES (FNMS) Dede Van Quill 13210 SE 342nd St. Auburn, WA 98092 (800) 507-3667 (253) 333-1483 (253) 288-7679 (FAX) [email protected] www.fnms.net 1,2,3,4,6,7,8,9 English

Nasal Encephalocele See: Craniofacial Disorders

Nephritis See: Kidney Diseases, Fetal Alcohol Syndrome

Neurodegeneration with Brain Iron Accumulation (NBIA) NBIA DISORDERS ASSOCIATION (FORMERLY HALLERVORDEN-SPATZ SYNDROME ASSOCIATION) Patricia V. Wood 2082 Monaco Ct. El Cajon, CA 92019-4235 (619) 588-2315 (619) 588-4093 (FAX) [email protected] www.NBIAdisorders.org 1,2,3,6,8,9 Italy (AISNAF), France (AIDNAI), Spain (ENOCH), Switzerland (NBIA Suisse)

Neurofibromatosis NEUROFIBROMATOSIS, INC. Kim Bischoff 213 S. Wheaton St. Wheaton, IL 60187 (630) 510-1115 (800) 942-6825 (630) 510-8508 (FAX) [email protected] www.nfnetwork.org 1,2,4,5,7,8 English, Spanish THE CHILDREN’S TUMOR FOUNDATION John Risner 120 Wall Street, 16th Floor New York, NY 10005-3904 (212) 344-6633 (800) 323-7938 (212) 747-0004 (FAX) [email protected] www.CTF.org 2,9

Neurological Disorders ASSOCIATION FOR COMPREHENSIVE NEUROTHERAPY LATITUDES Sheila Rogers DeMare 20504 Canal Drive Grosse Ile, MI 48138 [email protected] www.latitudes.org 1,2,4,7 English CHILDREN’S NEUROBIOLOGICAL SOLUTIONS Alex Richmond 1223 Wilshire Blvd, #937 Santa Monica, CA 90403 (866) 267-5580 (310) 889-8611 (805) 963-6633 (FAX) [email protected] www.cnsfoundation.org 1,5,7,8 HOPE FOR CHILDREN RESEARCH FOUNDATION Meg Minassian 700D Lake Street Ramsey, NJ 7446 (201) 962-8686 (201) 962-8688 (FAX) [email protected] 8,9

DOWN SYNDROME CLINIC AND RESEARCH CENTER (DSCRC) AT THE KENNEDY KRIEGER INSTITUTE George Capone MD 707 N. Broadway Baltimore, MD 21205 (443) 923-9200 (800) 873-3377 443) 923-9400 (FAX) www.kennedykrieger.org

Nonketotic Hyperglycinemia

Neurometabolic Disorders

Obsessive-Compulsive Disorder

See: Metabolic Disorders

Neuromuscular Disorders MUSCULAR DYSTROPHY CANADA Margaret Otter 2345 Yonge Street, Suite 90 Toronto, ON M4P 2E5 (866) MUSCLE-8 (416) 488-7523 (FAX) [email protected] www.muscle.ca 1,2,3,4,5,6,7,8,9 English, French

Neuronal Ceroid Lipofuscinoses See: Batten Disease

Neuropathy, Auditory

See: Acidemia, Organic

Norman-Roberts Syndrome See: Lissencephaly

Nyhan Syndrome See: Lesch-Nyhan Syndrome

INTERNATIONAL OCD FOUNDATION Alex Bahrawy PO Box 961029 Boston, MA 02196 (617) 973-5801 (617) 973-5803 (FAX) [email protected] www.iocdf.org 1,2,4,5,6,7,8,9 English

Obstructive Hydrocephalus See: Dandy-Walker Syndrome

Oculocerebrorenal Syndrome See: Lowe Syndrome

See: Kernicterus

Oldfield Syndrome

Neuropathy, Hereditary, Sensory Motor

Oligosaccharidoses

See: Charcot-Marie-Tooth Disease

See: Tay-Sachs Disease

See: Colon Cancer, Hereditary

See: Craniofacial Disorders

See: Lissencephaly

Organic Acidemia

Pagon Syndrome

See: Acidemia, Organic

See: Hydrocephalus; Lissencephaly

THE CHILDREN’S ONCOLOGY GROUP (COG) Cheryl Fleming 4600 East-West Highway, Ste 600 Bethesda, MD 20814 (800) 458-6223 (301) 718-0047 (FAX) [email protected] www.curesearch.org/ 6

Organic Acidemia See: Acidemia, Organic

Ornithine Transcarbamylase (OTC) Deficiency See: Urea Cycle Disorders

Osler-Weber-Rendu Syndrome See: Hemorrhagic Telangiectasis, Hereditary

Osteogenesis Imperfecta OSTEOGENESIS IMPERFECTA FOUNDATION Tracy Hart 804 W. Diamond Ave., Suite 210 Gaithersburg, MD 20878 (844) 889-7579 (301) 947-0083 (301) 947-0456 (FAX) [email protected] www.oif.org 1,2,3,4,6,7,8, 9 English

Ostomy

See: Opitz Syndrome

THE OXALOSIS AND HYPEROXALURIA FOUNDATION Kim Hollander 201 E. 19th Street, Suite 12E New York, NY 10003 (212) 777-0470 (800) OHF-8699 (212) 777-0471 (FAX) [email protected] www.ohf.org 1,2,6,7,8,9

Neurotransmitter Diseases, Pediatric

Opitz HypertelorismHypospadius Syndrome

ARA PARSEGHIAN MEDICAL RESEARCH FOUNDATION Peg Romano 4729 E Sunrise Dr, #327 Tucson, AZ 85718- 4535 (520) 577-5106 (520) 577-5212 (FAX) [email protected] www.parseghian.org English NATIONAL NIEMANN-PICK DISEASE FOUNDATION (NNPDF) Nadine M. Hill PO Box 49 Fort Atkinson, WI 53538-0049 (877) 287-3672 (920) 563-0931 (FAX) [email protected] www.nnpdf.org 1,2,3,4,6,7,8 English

Pachygyria

Oxalosis & Hyperoxaluria

See: FG Syndrome

Niemann-Pick Disease

Orbital Hypertelorism

Opitz-Frias Syndrome

See: Charcot-Marie-Tooth Disease

See: Sotos Syndrome

Pediatric Cancer

See: Acidemia, Organic

See: Opitz Syndrome

Opitz FG Syndrome

Nevo Syndrome

Oxoprolinuria

See: Craniofacial Disorders

OSTOMY CANADA SOCIETY INC. 344 Bloor St. West, Suite 501 Toronto, ON M5S 3A7 (416) 595-5452 (888) 969-9698 (416) 595-9924 (FAX) [email protected] www.ostomycanada.ca 1,2,3,4,5,6,7,8,9 English French UNITED OSTOMY ASSOCIATION, INC. Dave Rudzin PO Box 525 Kennebunk, MN 04043-0525 (800) 826-0826 (949) 660-9262 (FAX) www.uoa.org UNITED OSTOMY ASSOCIATIONS OF AMERICA, INC. PO Box 525 Kennebunk, ME 04043-0525 (800) 826-0826 (888) 747-9655 (FAX) [email protected] www.ostomy.org 1,2,3,5,6,7 English

Neuropathy, Peripheral

PEDIATRIC NEUROTRANSMITTER DISEASE ASSOCIATION Nancy Speller 28 Prescott Place Old Bethpage, NY 11804 [email protected] www.pndassoc.org 2,3,7,8,9

Orbital Hypertelorism

See: Opitz Syndrome

Opitz Oculogenitolaryngeal Syndrome See: Opitz Syndrome

Opitz Syndrome OPITZ G/BBB FAMILY NETWORK Dr. John M. Opitz 5974 N Willowdale Lane Garden City, ID 83714 (208) 286-2300 [email protected] www.opitznet.org 1,2 English, Spanish, Japanese, Italian

Opitz-BBBG Compound Syndrome

Opsoclonus-Myoclonus Syndrome OPSOCLONUS-MYOCLONUS SUPPORT NETWORK Connie Quinn 725 North St Jim Thorpe, PA 01201 (413) 447-2000

Pallister-Hall Syndrome See: Anorectal Malformations; Pituitary Tumors

Pelizaeus-Merzbacher Disease

Pallister-Killian Mosaic Syndrome chromosome 12

THE PMD FOUNDATION Jeff Leonard 10000 Lincoln Drive East, Ste 201 Marlton, NJ 08053 609-443-9623 [email protected] www.pmdfoundation.org

PKS KIDS Dawn Bergquist 123 Carowinds Drive Greencastle, PA 17225-1707 717-597-4897 [email protected] www.pkskids.net

Pancytopenia, Congenital See: Anemia

Pemphigus, Familial See: Ichthyosis

Peripheral Neuropathy See: Charcot-Marie-Tooth Disease

Panmyelopathy See: Anemia, Aplastic

Panmyelophthisis See: Anemia, Aplastic Panthothenate Kinase-Associated Neurodegeneration (PKAN) Neurodegeneration with Brain Iron Accumulation (NBIA)

Peroneal Muscular Atrophy See: Charcot-Marie-Tooth Disease

Pervasive Developmental Disorder (PDD) See: Autism

Peutz-Touraine Syndrome See: Colon Cancer, Hereditary

Papillomas See: Respiratory Papillomatosis, Recurrent

Pfeiffer Syndrome

Paralysis, Periodic

Phakomatosis

See: Muscular Dystrophy

See: Tuberous Sclerosis

Paralytic Polio

Phenylketonuria (PKU)

See: Polio

NATIONAL PKU NEWS Sarah Chamberlin PO Box 43552 Montclair, NJ 07043 (973) 619-9160 [email protected] www.pkunews.org 2 English

Paramyotonia Congenita See: Muscular Dystrophy

Paroxymsal Dyskinesias See: Dystonia

Parry-Romberg Syndrome See: Craniofacial Disorders

PDD

See: Craniofacial Disorders

Phosphofructo Kinase Deficiency

See: Autism

See: Glycogen Storage Diseases; Muscular Dystrophy

Pediatric Brain Tumors Spinal Cord

Phosphoglycerate Kinase Deficiency

MAKING HEADWAY FOUNDATION, INC. Edward Manley, Chairman 115 King St. Chappaqua, NY 10514-3460 (914) 238-8384 (914) 238-1693 (FAX) [email protected] www.makingheadway.org 4,8 English

See: Muscular Dystrophy

Phosphoglycerate Mutase Deficiency See: Muscular Dystrophy

Phosphorylase b Kinase Deficiency See: Glycogen Storage Diseases; Muscular Dystrophy

Phosphorylase Deficiency See: Glycogen Storage Diseases; Muscular Dystrophy

eparent.com | EP MAGAZINE • January 2017 25

National Resources for Specific Disabilities

Pierre Robin Syndrome

Porphyria

Progeria

Purine Metabolic Disorders

See: Craniofacial Disorders; Growth Disorders

THE PROGERIA RESEARCH FOUNDATION, INC Audrey Gordon PO Box 3453 Peabody, MA 01961-3453 (978) 535-2594 (978) 535-5849 (FAX) [email protected] www.progeriaresearch.org 1,2,5,8,9

PURINE RESEARCH SOCIETY Tahma Metz 5424 Beech Avenue Bethesda, MD 20814-1730 (301) 530-0354 (301) 564-1180 (FAX) [email protected] www.PurineResearchSociety.org 2,4,8 English

RASMUSSEN’S SYNDROME AND HEMISPHERECTOMY SUPPORT NETWORK Lynn/Al Miller 8235 Lethbridge Rd Millersville, MD 21108 410-987-5221 [email protected] www.rarediseases.org

Progressive Hypoerythemia

Purpura Hemorrhagica

Recklinghausen Disease

See: Anemia, Aplastic

See: Purpura, Idiopathic Thrombocytopenia (ITP)

See: Neurofibromatosis

Purpura, Idiopathic Thrombocytopenia (ITP)

Reflex Sympathetic Dystrophy Syndrome Complex Regional Pain Syndrome (CRPS)

See: Ichthyosis

AMERICAN PORPHYRIA FOUNDATION Desiree Lyon 4900 Woodway Ste 780 PO Box 22712 Houston, TX 77056 (713) 266-9617 (866) APF-3635 (713) 840-9552 (FAX) www.porphyriafoundation.com 1,2,3,4,6,8 English CANADIAN PORPHYRIA FOUNDATION INC. Lois J. Aitken 487 Walker Ave. PO Box 1206 Neepawa, MB R0J 1H0 (866) 476-2801 (204) 476-2800 [email protected] 1,2,3,4 English, French

Polio and Ventilator Users

Port Wine Stains

POST-POLIO HEALTH INTERNATIONAL Joan L. Headley PHI, 4207 Lindell Blvd., #110 Saint Louis, MO 63108-2930 (314) 534-0475 (314) 534-5070 (FAX) [email protected] www.post-polio.org 1,2,3,4,6,7,8 English, Spanish, French, German, and others

See: Sturge-Weber Syndrome

Pigment Disorders See: Albinism & Hypopigmentation; Vitiligo

Pituitary Disorders/Tumors PITUITARY NETWORK ASSOCIATION Barbara J. Schriber PO Box 1958 Thousand Oaks, CA 91358 (805) 499-9973 (805) 480-0633 (FAX) [email protected] www.pituitary.org 1,2,3,6,7,8 English

Pityriasis Rubra Pilaris

Polycystic Kidney Disease See: Kidney Disorders

Polymyositis See: Muscular Dystrophy

Polyneuritis, Acute Idiopathic See: Guillain-Barr Syndrome

Polyneuropathy, Chronic Relapsing See: Guillain-Barr Syndrome

Polyposis See: Cancer; Colon Cancer, Hereditary

Polyradiculoneuropathy See: Guillain-Barr Syndrome

Pompe Disease (AMDA) ACID MALTASE DEFICIENCY ASSOCIATION Tiffany House PO Box 700248 San Antonio, TX 78270-0248 (210) 494-6144 (210) 490-7161 (FAX) [email protected] www.amda-pompe.org 1,2,3,4,6,7,8,9 English

Postaxial Acrofacial Dysostosis See: Nager & Miller Syndromes

Post-Polio See: Polio

Prader-Willi Syndrome ONTARIO PRADER-WILLI SYNDROME ASSOCIATION Nita Goldband POB 73514 Toronto, ON M6C 4A7 (416) 481-8657 (800) 563-1123 (416) 981-7788 (FAX) [email protected] www.opwsa.com 1,2 English, French THE PRADER-WILLI SYNDROME ASSOCIATION (USA) Janalee Heinemann 8588 Potter Park Drive, Suite 500 Sarasota, FL 34238 (800) 926-4797 (941) 312-0400 (941) 312-0142 (FAX) [email protected] www.pwsausa.org 1,2,3,4,5,6,7,8,9 English, Spanish, French

Prematurity, Birth Defects, Disabilities, General MARCH OF DIMES FOUNDATION 1275 Mamaroneck Avenue White Plains, NY 10605 (914) 428-7100 (888) 663-4637 (914) 997-4763 (FAX) [email protected] www.marchofdimes.com 1,2,3,4,5,6,7,8,9 English, Spanish

Primary Immune Disorder See: Granulomatous Disease Chronic

26 January 2017 • EP MAGAZINE | eparent.com

Propinonyl-CoA Carboxylase (PCC) See: Acidemia, Organic

Propionic Acidemia See: Acidemia, Organic

Proteus Syndrome See: Neurofibromatosis

Protocoproporphyria See: Liver Disorders; Porphyria

Protoporphyria See: Liver Disorders; Porphyria

Pseudocholinesterase Deficiency

ITP SOCIETY Theotora Zionga Children’s Blood Foundation 333 E. 38th St. Rm 830 New York, NY 10019 (212) 297-4336 (800) ITP-7010 (212) 297-4340 (FAX) 1,2,3,4,6,8,9 English

Rasmussen’s Syndrome, Hemispherectomy

See: Purine Metabolic Disorders

REFLEX SYMPATHETIC DYSTROPHY SYNDROME ASSOCIATION James W. Broatch, M.S.W., Executive Vice President, Director 99 Cherry Street Milford, CT 06460 (203) 877-3790 (877) 662-7737 (203) 882-8362 (FAX) [email protected] www.rsds.org 1,2,3,4,5,6,8

Pyrimidine Metabolic Disorders Pyroglutamicaciduria

Refractory Anemia

See: Malignant Hyperthermia

See: Acidemia, Organic

See: Anemia, Aplastic

Pseudo-Hurler Polydystrophy

Pyrrolorphyria

Refsum Disease

See: Porphyria

See: Ichthyosis; Leukodystrophy; Tay-Sachs Disease

Pyruvate Carboxylase Deficiency

Renal Disorders

See: Mucopolysaccharidoses Tay-Sachs Disease

Pseudoxanthoma Elasticum (PXE) NATIONAL ASSOCIATION FOR PSEUDOXANTHOMA ELASTICUM 8760 Manchester Road St. Louis, MO 63144-2724 (314) 962-0100 (314) 962-0100 (FAX) [email protected] www.pxenape.org 1,2,3 Newsletter provided on tape, in print and on web

Psoriasis NATIONAL PSORIASIS FOUNDATION Catie Coman 6600 SW 92nd Ave, Suite 300 Portland, OR 97223-7195 (503) 244-7404,367 (800) 723-9166 (503) 245-0626 (FAX) [email protected] www.psoriasis.org 1,2,3,4,6,7,8 English

See: Acidemia, Organic;

See: Kidney Disorders

Pyruvate Dehydrogenase Deficiency

Rendu-Osler-Weber Syndrome

See: Acidemia, Organic;

Q-T Prolongation See: Long Q-T Syndrome

Rapp-Hodgkins Syndrome See: Cleft Palate; Craniofacial Disorders; Deaf-Blind; Ectodermal Dysplasias; Hearing Impairments; Visual Impairments

Rare Disorders NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) Mary Dunkle 55 Kenosia Avenue Danbury, CT 06810 (203) 744-0100 (203) 263-9938 (FAX) [email protected] www.rarediseases.org 1,2,3,4,6,8 English

See: Hemorrhagic Telangiectasis, Hereditary

Respiratory Papillomatosis, Recurrent RECURRENT RESPIRATORY PAPILLOMATOSIS FOUNDATION Bill Stern PO Box 6643 Lawrenceville, NJ 8648 (609) 273-4442 (866) 498-7559 (FAX) [email protected] www.rrpf.org 1,2,3,4,7,8,9

Pulmonary Valvular Stenosis See: Heart Disorders

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources

5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

Retinitis Pigmentosa Acid Maltase Deficiency RETINITIS PIGMENTOSA INTERNATIONAL Helen Harris PO Box 900 Woodland Hills, CA 91365 (800) Fight-RP (818) 992-0500 (818) 992-3265 (FAX) [email protected] www.rpinternational.org 1,2,4,7,8,9 English, Spanish materials THE FOUNDATION FIGHTING BLINDNESS Mitsy Palmer 7168 Columbia Gateway Drive Suite 100 Columbia, MD 21046 (800) 683-5555 (800) 683-5551, OR www.FightBlindness.org 1,2,5, 6,8,9 English only FOUNDATION FIGHTING BLINDNESS Sharon Colle 890 Yonge Street, 12th Floor Toronto, ON M4W 3P4 (800) 461-3331 (416) 360-4200 (416) 360-0060 (FAX) [email protected] www.ffb.ca 1,2,3,6,7,8,9 English

Retinoblastoma ASSOCIATION FOR PARENTS OF WITH VISION IMPAIRMENTS Susan LaVenture 1 North Lexington Ave, 8th Floor White Plains, NY 10601 (800) 562-6265 (617) 972-7441 (617) 972-7444 (FAX) [email protected]ouseguild.org www.Napvi.org 1,2 English, Spanish

Retinocerebral Angiomatosis See: Von Hippel-Lindau Syndrome

Rett Syndrome RETT SYNDROME RESEARCH FOUNDATION Monica Coenraads 4600 Devitt Drive Cincinnati, OH 45246 (800) 818-7388 (513) 874-3020 (513) 874-2520 (FAX) [email protected] 1,2,3,8 English THE INTERNATIONAL RETT SYNDROME FOUNDATION Jennifer Endres 4600 Devitt Drive Cincinnati, OH 45246 (513) 874-3020 (800) 818-7388 (513) 874-2520 (FAX) [email protected] www.rettsyndrome.org 1,2,3,4,5,6,7,8,9 English, Spanish

Ring Chromosome 15

Scleroderma

See: Chromosome Deletions; Craniofacial Disorders; Epilepsy; Heart Disorders; Kidney Disorders; Limb Disorders; Scoliosis

SCLERODERMA FOUNDATION, INC. 300 Rosewood Drive, Suite 105 Danvers, MA 01923 (800) 722-HOPE (978) 463-5843 (978) 463-5809 (FAX) [email protected]scleroderma.org www.scleroderma.org 1,2,4,5,6,7,8 English, Spanish SCLERODERMA RESEARCH FOUNDATION Emanuel Coronis 220 Mongonmery St, Suite 1411 San Francisco, CA 94104 (800) 441-CURE (415) 834-9444 (415) 834-9177 (FAX) [email protected] www.srfcure.org 1,2,4

Ring Chromosome 21 See: Chromosome Deletions

Ring Chromosome 22 See: Chromosome Deletions

Ring Chromosome 4 See: Chromosome Deletions;

Ring Chromosome 9 See: Chromosome Deletions; Craniofacial Disorders

Robinow Syndrome ROBINOW SYNDROME FOUNDATION Karla M. Kruger P.O, Box 934 Anoka, MN 55303 (763) 434-1152 (763) 291-7190 (763) 434-1152 (FAX) [email protected] www.Robinow.org 2,3,6,9 English

Romano-Ward Syndrome See: Long Q-T Syndrome

Rosai-Dorfman Disease See: Histiocytosis

Rubinstein Syndrome See: Rubinstein-Taybi Syndrome

Rubinstein-Taybi Syndrome Rubinstein-Taybi Parent Group USA Lorrie Baxter 24081 G Lane Cedar, KS 67628 (888)447-2989 [email protected] www.rubinstein-taybi.org 2,3 English

Saethre-Chotzen Syndrome

Scoliosis NATIONAL SCOLIOSIS FOUNDATION Joseph O’Brien 5 Cabot Pl Boston, MA 02072 (781) 341-6333 (800) 673-6922 (781) 341-8333 (FAX) [email protected] www.scoliosis.org 1,2 English, some Spanish

Seizure Disorders THRESHOLD - INTRACTABLE SEIZURE DISORDER SUPPORT GROUP & NEWSLETTER Jacqueline A. Moskowitz 35 Beaverson Blvd, Bldg 11 Brick, NJ 08723 (800) 372-6510 (732) 528-8080 (732) 262 4373 (FAX) [email protected] www.fscnj.org 1,2,3,4,5,6,7,8,9 English some Spanish and Italian

Sensory and Autonomic Neuropathy, Hereditary See: Familial Dysautonomia

See: Craniofacial Disorders

Sensory Motor Neuropathy, Hereditary

Sandhoff Disease

See: Charcot-Marie-Tooth Disease

See: Tay-Sachs Disease

Sensory Neuropathy with Anhidrosis, Congenital

Sanfilippo Syndrome See: Mucopolysaccharidoses Tay-Sachs Disease

Scheie Syndrome See: Mucopolysaccharidoses Tay-Sachs Disease

Schinzel-Giedion Syndrome See: Apnea, Sleep; DeafBlindEpilepsy; Growth Disorders; Hearing Impairments; Visual Impairment

Short Stature Russell-Silver Syndrome, Septo Optic Dysplasia THE MAGIC FOUNDATION Pam Pentaris 6645 W. North Avenue Oak Park, IL 60302 (800) 362-4423 (708) 383-0808 (708) 383-0899 (FAX) [email protected] www.magicfoundation.org 1,2,3,4,6,7

Shprintzen Syndrome See: Velo-Cardio-Facial Syndrome

Shy-Drager/Multiple System Atrophies See: Dysautonomia

Sialidosis See: Mucopolysaccharidoses Tay-Sachs Disease

Smith-Magenis Syndrome PRISMS, INC. (PARENTS AND RESEARCHERS INTERESTED IN SMITH-MAGENIS SYNDROME) Randy Beall 21800 Town Center Plaza Suite #266A-633 Sterling, VA 20164 (972) 231-0035 (972) 499-1832 (FAX) www.prisms.org 1,2,3,6,8,9

Sotos Syndrome SOTOS SYNDROME SUPPORT ASSOCIATION PO Box 4626 Wheaton, IL 60189 (888) 246-SSSA, OR [email protected] www.sotossyndrome.org 1,2,3,4,6 English, Spanish materials

Souques-Charcot Syndrome See: Progeria

Sialolipidosis See: Mucolipidosis Type IV

Sickle Cell Anemia See: Sickle Cell Disease

Sickle Cell Disease HEALTH SERVICES SICKLE CELL AGENCY Gladys Ashe Robinson 1102 E. Market St. Greensboro, NC 27401 (336) 274-1507 (800) 733-8297 (336) 275-4251 (FAX) www.piedmonthealthservices.org 1,2,3,4,5,6,7 English, Spanish SICKLE CELL DISEASE ASSOCIATION OF AMERICA Willard V. Edwards 3700 Koppers Street, Suite 570 Baltimore, MD 21227 (800) 421-8453 (410) 528-1555 (410) 528-1495 (FAX) [email protected] www.sicklecelldisease.org 1,2,3,4,5,6,8,9

SIDS

South African Genetic Porphyria See: Liver Disorders; Porphyria

Spasmodic Dysphonia See: Dystonia

Spasmodic Torticollis See: Dystonia

Spasmodic Wryneck See: Dystonia

Spastic Paraplegia, Familiar See: Ataxia

Speech Disorders CENTER FOR SPEECH AND LANGUAGE DISORDERS 310-D S. Main St. Lombard, IL 60148 (630) 652-0200 (630) 652-0300 (FAX) [email protected] www.csld.org

Spielmeyer-Vogt Disease See: Batten Disease

See: Sudden Infant Death Syndrome (SIDS)

Spielmeyer-Vogt-Batten Syndrome

Simpson-Golabi-Behmel Syndrome

See: Batten Disease

See: Familial Dysautonomia

See: Beckwith-Wiedermann Syndrome

Spina Bifida

Serum Protease Inhibitor Deficiency

SLD

See: Alpha-1-Antitrypsin (AAT) Deficiency

Severe Combined Immunodeficiency (SCID) See: Immune Disorders

Sex Chromosome Disorders, Male See: Klinefelter Syndrome

See: Dyslexia

Sleep Apnea See: Apnea, Sleep

Sly Syndrome See: Mucopolysaccharidoses Tay-Sachs Disease

SPINA BIFIDA ASSOCIATION, NATIONAL OFFICE Juanita Panlener 1600 Wilson Blvd, Suite 800 Arlington, VA 22209 (800) 621-3141 (202) 944-3295 (FAX) [email protected] www.spinabifidaassociation.org 1,2,3,4,5,6,7,8,9 English, Spanish materials, scholarship program

Smith-Lemli-Opitz Syndrome See: Craniofacial Disorders

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National Resources for Specific Disabilities

Spinal Cord Injuries NATIONAL SPINAL CORD INJURY ASSOCIATION 120-34 Queens Blvd # 320 Kew Gardens, NY 11415 (800) 404-2898 (718) 803-3782 (718) 803-0414 (FAX) [email protected] www.spinalcord.org 1,2,3,4,5,6,7 NATIONAL SPINAL CORD INJURY ASSOCIATION Eric Larson 75-20 Astoria Blvd., Suite 120 Suite 120 Jackson Heights, NY 11370 (718) 803-3782 (718) 512-0010 (866) 387-2196 (FAX) www.spinalcord.org 1,2,3,4,5,7,8 English, Spanish CHRISTOPHER & DANA REEVE FOUNDATION PARALYSIS RESOURCE CENTER Sheila Fitzgibbon 636 Morris Turnpike, Suite 3A Short Hills, NJ 07078 973-467-8270 ext 7204 [email protected] www.christopherreeve.org 2,4 English, Spanish

Spinal Muscular Atrophy CURE SMA Kenneth Hobby 925 Busse Rd. Elk Grove Village, IL 60007 (800) 886-1762 (847) 367-7620 (847) 367-7623 (FAX) [email protected] www.curesma.org 1,2,3,4,5,6,7,8,9 English, some Spanish publications

Spinocerebellar Ataxia See: Ataxia;

Splenic Anemia, Familial See: Gaucher Disease

Spondyloepiphyseal Dysplasia Tarda

Stengel-Batten-MayouSpielmeyer-Vogt Disease See: Batten Disease

Stickler Syndrome STICKLER INVOLVED PEOPLE (SIP) Pat Houchin 15 Angelina Augusta, KS 67010 (316) 259-5194 [email protected] www.Sticklers.org 1,2,4,6,9 English, French

Stroke HEART AND STROKE FOUNDATION OF CANADA Dave Gibson 222 Queen Street, Suite 1402 Ottawa, ON K1P 5V9 (613) 569-4361 (888) 473-4636 (613) 569-3278 (FAX) [email protected] www.heartandstroke.ca 2,5,6,7,8,9 English, French NATIONAL STROKE ASSOCIATION Matt Lopez 9707 E. Easter Lane, Suite B Centennial, CO 80112 (800) STR-OKES (800) 787-6537 (303) 649-1328 (FAX) [email protected] www.stroke.org 1,2,3,4,6,7,8,9 English, Spanish

Sturge-Weber Syndrome STURGE-WEBER FOUNDATION (CANADA) INC Kathleen Moore Sturge-Weber Syndrome 1960 Prairie Ave Port Coquitlam, BC V3B 1V4 (778) 855-9364 (604) 942-9209 (FAX) [email protected] www.sturge-weber.ca 1,2,3,4,6,7,8,9 English

See: Growth Disorders

Spondyloepiphyseal Dysplasia Congenita See: Cleft Palate; Growth Disorders; Visual Impairments

Subacute Sclerosing Panencephalitis MEDICAL HOME PLUS, INC Vicki Hardy-Murrell RN-BSN 8719 Forest Hill Ave. Bon Air, VA 23235 (804) 330-5030 (804) 330-5032 (FAX) [email protected] www.medicalhomeplus.org 1,2 English, Italian, Greek, Asian Languages

Stengel Syndrome See: Batten Disease

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

28 January 2017 • EP MAGAZINE | eparent.com

Sturge-Weber Syndrome, Klippel-Trenaunay Syndrome STURGE-WEBER FOUNDATION (SWF) Karen Ball PO Box 418 Mount Freedom, NJ 07970-0418 (973) 895-4445 (973) 895-4846 (FAX) [email protected] www.sturge-weber.org 1,2,3,4,6,8,9

Stuttering STUTTERING FOUNDATION OF AMERICA Jane Fraser 1805 Moriah Woods Blvd, Suite 3 Memphis, TN 38117 (901) 761-0343 (901) 761-0484 (FAX) [email protected] www.stutteringhelp.org 1,2,4,7,8 English, French spoken; resources translated to 39 languages; Spanish website

Subacute Necrotizing Encephalopathy See: Mitochondrial Disorders

Subacute Sclerosing Panencephalitis

Sulfatidosis, Juvenile, Austin Type

TEF-VATER-EATEF, VATER, VACTERL

See: Hearing Impairments; Ichthyosis; Leukodystrophy; TaySachs Disease

TEF/VATER INTERNATIONAL SUPPORT NETWORK Terri Burke c/o 9005 N Van Houten Portland, MD 97203 (301) 952-6837 (301) 952-9152 (FAX) [email protected] www.tefvater.org 1,2,3,7,8,9

Surdicardiac Syndrome See: Hearing Impairments; Long Q-T Syndrome

Swedish Porphyria See: Porphyria

Syndactylic Oxycephaly See: Apert Syndrome

Syringobulbia See: Syringomyelia

Syringomyelia, Chiari Malformation ASAP: AMERICAN SYRINGOMYELIA & CHIARI ALLIANCE PROJECT Patricia Maxwell PO Box 1586 Longview, TX 75606 (800) 272-7282 (903) 236-7079 (903) 757-7456 (FAX) [email protected] www.asap.com 1,2,3,6,8 English

See: Reflex Sympathetic Dystrophy Syndrome

Thyroid Disorders

Torsion Dystonia, Idiopathic

See: Ichthyosis

See: Dystonia

Tay-Sachs Disease

Tourette Syndrome

NATIONAL TAY-SACHS & ALLIED DISEASES ASSOCIATIOIN (NTSAD) Ingrid S. Miller 2001 Beacon St., Suite 204 Brighton, MA 02135 (617) 277-4463 (800) 90-NTSAD (617) 277-0134 (FAX) [email protected] www.ntsad.org 1,2,3,4,5,6,7,8,9

TOURETTE SYNDROME ASSOCIATION, INC. Tracy Flynn 42-40 Bell Blvd, Suite 205 Bayside, NY 11361 (888) 4-TOURET (718) 279-9596 (FAX) [email protected] www.tsa-usa.org 1,2,4,5,6,7,8 English, Spanish TOURETTE SYNDROME FOUNDATION OF CANADA Lynn McLarnon 245-5955 Airport Road Mississauga, ON L4V 1R9 (800) 361-3120 (905) 673-2255 (905) 673-2638 (FAX) www.tourette.ca 1,2,4,5,6,8 English, Spanish, French

Target Cell Anemia

Sudeck Atrophy

See: Heart Disorders; Kidney Disorders; Short Stature

Tay Syndrome

Succinylcholine Sensitivity

BABY’S BREATH Emily Isaak, Executive Director PO Box 21053 St. Catharines, ON L2M 7X2 (800) 363-7437 (905) 688-3300 (FAX) [email protected] www.babysbreathcanada.ca 1,2,3,4,5 English/French materials NATIONAL SUID/SIDS RESOURCE CENTER Rochelle Mayer Ed.D. Georgetown University 2115 Wisconsin Avenue, N.W.Suite 601 Washington, DC 20007 (202) 687-7466 (202) 687-7466 (703) 821-2098 (FAX) [email protected] www.sidscenter.org 1,2,3,4 Spanish materials

Thrombocytopenia Absent Radius (TAR) Syndrome

See: Glycogen Storage Diseases; Muscular Dystrophy

Systemic Elastorrhexis of Touraine

Sudden Infant Death Syndrome (SIDS)

THE MARFAN FOUNDATION Amy Kaplan RN,BSN 22 Manhasset Avenue Port Washington, NY 11050 (800) 862-7362 (516) 883-8712 (516) 883-8040 (FAX) [email protected] www.marfan.org 1,2,3,4,5,6,7,8,9 English, limited Spanish materials

THYROID FOUNDATION OF CANADA Katherine Keen PO Box 298 Bath, ON K0H 1G0 (800) 267-8822 [email protected] www.thyroid.ca 1, 2, 6, 8 English, French THYROID FOUNDATION OF AMERICA Judy Pate 410 Stuart Street Boston, MA 02116 (800) 832-8321 (617) 534-1500 (617) 534-1515 (FAX) [email protected] www.allthyroid.org 1,2,4,6,7,8,9 English, Spanish

NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS & STROKE (NINDS) Story C. Landis Ph.D. PO Box 5801 Bethesda, MD 20824 (800) 352-9424 (301) 496-5751 www.ninds.nih.gov 1,2,4,7 English, Spanish See: Malignant Hyperthermia

Thalassemia Major

See: Pseudoxanthoma Elasticum (PXE)

Systemic Mast Cell Disease See: Mast Cell Disease, Systemic

Tangier Disease See: Tay-Sachs Disease See: Cooley Anemia

Tarui Disease

Toxic Paralytic Anemia Trichotillomania

Tyrosinemia, Hereditary, Hepatorenal Type/ Tyrosinemia type I, tyrosyluria

See: Obsessive-Compulsive Disorder

See: Kidney Disorders; Liver Disorders

Tuberous Sclerosis

Ulcerative Colitis

TUBEROUS SCLEROSIS ALLIANCE Dena Hook 801 Roeder Road, Suite 750 Silver Spring, MD 20910 (800) 225-6872 (301) 562-9890 (301) 562-9870 (FAX) [email protected] www.tsalliance.org 1,2,3,4,5,6,7,8,9 English, Spanish

See: Crohn Disease & Colitis

See: Anemia, Aplastic

Urea Cycle Disorders

Turcot Syndrome

NATIONAL UREA CYCLE DISORDERS FOUNDATION Cynthia Le Mons 75 S. Grand Avenue Pasadena, CA 91105 (626) 578-0833 (626) 578-0823 (FAX) [email protected] www.nucdf.org 1,2,3,4,6,7,8,9 English, Spanish

See: Brain Tumors; Cancer; Colon Cancer, Hereditary

Urologic Disorders

Turner Syndrome

See: Incontinence; Kidney Disorders

TURNER SYNDROME SOCIETY OF CANADA Wendy Gee #7 - 2100 Thurston Drive Ottawa, ON K1G 4K8 (613) 321-2267 (800) 465-6744 (613) 321-2268 (FAX) [email protected] www.turnersyndrome.ca 1,2,3,4,5,6 English, French materials TURNER’S SYNDROME SOCIETY OF THE US Cindy Scurlock 11250 West Road #G Houston, TX 77065 (800) 365-9944 (832) 912-6006 (832) 912-6446 (FAX) [email protected] www.turnersyndrome.org 1,2,3,5,6,7,9 Spanish materials

Twin to Twin Transfusion Syndrome TWIN TO TWIN TRANSFUSION SYNDROME FOUNDATION Mary Slaman-Forsyt 411 Longbeach Parkway Bay Village, OH 44140 (800) 815-9211 (440) 899-1184 (FAX) [email protected] www.tttsfoundation.org 2,3,4 English, Spanish, French, German

Twin-related Diseases TWIN HOPE, INC., SOUTHERN OFFICE Paula Malone 411 Longbeach Parkway Bay Village, OH 44140 (800) 815-9211 [email protected] www.tttsfoundation.org 1,2,3,4,7,8,9 English Spanish/German/French; family guides

Urostomy See: Ostomy

Urticaria Pigmentosa See: Mast Cell Diseases

Users ventilation INTERNATIONAL VENTILATOR USERS NETWORK (IVUN) Joan Headley 4207 Lindell Blvd, # 110 St Louis, MO 63108-2930 (314) 534-0475 (314) 534-5070 (FAX) [email protected] www.ventusers.org 1,2,3,7,8

VACTERL THE VACTERL NETWORK Josie Quijas 483 Melody Drive Northglenn, CO 80260 (303) 880-3217 [email protected] www.vacterlnetwork.org 2,6,7

Vater Association See: VACTERL

Velo-Cardio-Facial Syndrome 22Q NATION Maureen Anderson 23-1 Norfolk St. Hampstead, NH 03841 603-489-1393 [email protected] 2,3 English

Ventricular Defects See: Heart Disorders

Vermis Cerebellar Agenesis See: Joubert Syndrome

Vestibular disorders VESTIBULAR DISORDERS ASSOCIATION Cynthia Ryan 5018 NE 15th Avenue Portland, OR 97211 (800) 837-8428 (503) 229-8064 (FAX) [email protected] www.vestibular.org 1,2,3,4,7

Visual Impairment/Hearing Impairment See: Deaf-Blind

Visual Impairments AMERICAN COUNCIL OF THE BLIND Melanie Brunson 1703 N. Beauregard St, Suite 420 Alexandria, VA 22311 (800) 424-8666 [email protected] www.acb.org 1,2,4,5,6,7 English AMERICAN FOUNDATION FOR THE BLIND Caitlin McFeely 2 Penn Plaza, Suite 1102 New York, NY 10121 (212) 502-7600 (888) 545-8331 (FAX) [email protected] www.afb.org BLIND CHILDREN’S CENTER Midge Horthon 4120 Marathon St Los Angeles, CA 90029-3584 (800) 222-3566 (323) 664-2153 (323) 665-3828 (FAX) [email protected] www.blindchildrenscenter.org 1,2,9 Engish, Spanish BLIND CHILDRENS FUND Diana Popp PO Box 187 Grand Ledge, MI 48837 (517) 488-4887 (517) 488-4887 [email protected] www.blindchildrensfund.org 2,3,4 English BRAILLE INSTITUTE OF AMERICAN 741 N. Vermont Ave. Los Angeles, CA 90029 (323) 663-1111 (800) BRA-ILLE (272-4553) (323) 663-0867 (FAX) [email protected] www.brailleinstitute.org 3,4,5,6,7,8 English, some Spanish COUNCIL OF FAMILIES WITH VISION IMPAIRMENT Roy Ward 6212 W Franklin St Richmond, VA 23226 (804) 288-0395 2,4,6,7 English

NATIONAL BRAILLE PRESS, INC. Brian Mac Donald 88 St. Stephen Street Boston, MA 02115-4312 (617) 266-6160 (888) 965-8965 (617) 437-0456 (FAX) [email protected] www.nbp.org 1,2 Braille PREVENT BLINDNESS AMERICA Sue Corbett 211 West Wacker Drive Suite 1700 Chicago, IL 60606 (800) 331-2020 (847) 843-2020 (312) 363-6052 (FAX) [email protected] www.preventblindness.org 1,2,3 English only VISION WORLD WIDE, INC. Patricia L. Price 5707 Brockton Drive, Suite 302 Indianapolis, IN 46220-5481 (800) 431-1739 (317) 254-1332 (317) 251-6588 (FAX) www.visionww.org 4 LIGHTHOUSE INTERNATIONAL Nicola Shepherd 15 West 65th Street New York, NY 10023 (800) 284-4422 (212) 821-9200 (212) 821-9707 [email protected] www.lighthouse.org 1,2,4,7 English, Spanish NATIONAL ORGANIZATION OF PARENTS OF BLIND CHILDREN A Division of the National Federation of the Blind Carrie Gilmer 200 East Wells Street Baltimore, MD 21230 (410) 659-9314,2360 (410) 685-5653 (FAX) [email protected] www.nfb.org/nopbc 1,2,3,4,5,6,7 FOUNDATION FIGHTING BLINDNESS Mitsy Palmer 7168 Columbia Gateway Drive Suite 100 Columbia, MD 21046 (410) 423-0600 (800) 683-5555 (410) 872-0438 (FAX) [email protected] www.FightBlindness.org 1,2,4,5,6,8,9

Von Hippel-Lindau Syndrome VON HIPPEL LINDAU ALLIANCE Ilene Sussman 2001 Beacon Street, Suite 208 Boston, MA 02135-7787 (617) 277-5667 (800) 767-4845 (858) 712-8712 (FAX) [email protected] www.vhl.org 1,2,3,4,5,6,7,8,9 English, French, Spanish, German, Japanese

Von Recklinghausen Disease See: Neurofibromatosis

Von Willebrand Disease See: Hemophilia

WAGR Syndrome INTERNATIONAL WAGR SYNDROME ASSOCIATION Shari Krantz PO Box 769 Hanover, PA 17331 (301) 370-8878 [email protected] www.wagr.org 1,2,3,4,6, 7,9 English, Spanish

Walker-Warburg Syndrome See: Hydrocephalus; Lissencephaly

Weber Syndrome See: Sturge-Weber Syndrome

Wegener Granulomatosis VASCULITIS FOUNDATION PO Box 28660 Kansas City, MO 64188-8660 (800) 277-9474 (816) 436-8211 (FAX) [email protected]

Werdnig-Hoffman Disease See: Spinal Muscular Atrophy

Werlhof Disease See: Purpura, Idiopathic Thrombocytopenia (ITP)

Werner Syndrome See: Progeria

Whistling Face Syndrome See: Freeman-Sheldon Syndrome

Whistling Face-Windmill Vein Hand Syndrome See: Freeman-Sheldon Syndrome

Vitiligo NATIONAL VITILIGO FOUNDATION (NVF) 11250 Cornell Park Drive Suite 207 B Cincinnati, OH 45242 (513) 793-6834 (513) 793-6887 (FAX) [email protected] www.nvfi.org English

White Matter Disorders See: Leukodystrophy

White Spot Disease See: Vitiligo

Von Gierke Disease See: Glycogen Storage Diseases eparent.com | EP MAGAZINE • January 2017 29

National Resources for Specific Disabilities

Williams Syndrome

Wilson’s Disease

Wish Organizations

WILLIAMS SYNDROME ASSOCIATION Terry Monkaba 570 Kirts Blvd, Suite 223 Troy, MI 48084 (800) 806-1871 (248) 244-2229 (248) 244-2230 (FAX) [email protected] www.williams-syndrome.org 1,2,3,6,7,8,9 English, Spanish, Chinese

WILSON DISEASE ASSOCIATION Mary Graper 5572 North Diversey Blvd Milwaukee, WI 53217 (866) 961-0533 (414) 961-0533 [email protected] www.wilsonsdisease.org 1,2,3,4,6,7,8,9 English, Spanish

CHILDREN’S WISH FOUNDATION INTERNATIONAL Linda Dozoretz 8615 Roswell Rd. Atlanta, GA 30350-7526 (800) 323-9474 (770) 393-9474 (770) 393-0683 (FAX) [email protected] www.childrenswish.org 1,2,3 English

Williams-Beuren Syndrome

Wiskott-Aldrich Syndrome

See: Williams Syndrome

See: Immune Disorders

Wilm’s Tumor

Xanthogranulomatosis, Juvenile

See: WAGR Syndrome, Genitalia, Ambiguous

Xeroderma Pigmentosum, UV sensitivity XP SOCIETY 437 Snydertown Rd Craryville, NY 12521 518-851-3466 [email protected] www.xps.org 1,2,3,4,7,8 English, Spanish

X-Linked Myotubular Myopathy See: Myotubular Myopathy, X-Linked; Muscular Dystrophy

Zellweger Syndrome See: Leukodystrophy

Ziehen-Oppenheim Disease See: Dystonia

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

See: Histiocytosis







My disability is one part of who I am.

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30 January 2017 • EP MAGAZINE | eparent.com



 













 







 

I urge you to ask your current team for advice on where to look locally/regionally. It is not easy to do a web search to find these practices (wouldn’t that be nice).

FINDING THE RIGHT NEW TEAM BY ALLEN FRIEDLAND, MD, FACP, FAAP s a physician that has an interest in the care of young adults with special health care needs, I hear from patients and families all the time about how hard it is to find a physician that is willing, knowledgeable and accessible to be the primary care physician and/or be the specialist physician once a person with a complex history turns 18–21 years of age. In general, years have gone into developing a strong relationship to a physician or team of physicians and other professionals only to have to start again in many instances. This leaves patients and families vulnerable to the potential medical consequences of not having the right care (e.g. more hospitalizations, worsened diabetic control, more transplants lost) and the tremendous anxieties that go along with the process of finding the “right new team.”

A

CARE TO PLAN, PLAN TO CARE: Understanding the transition process is essential to ensure that physicians will meet the needs of special needs patients.

32 January 2017 • EP MAGAZINE | eparent.com

As a physician board certified in both internal medicine (care of adults) and pediatrics (care of children) or “Med-Peds,” I care for patients/families of all ages and all types of conditions and I am not alone. Physicians across the country (with the same and different backgrounds of training than I have) started to develop primary care and specialty practices to make this transition easier for those people with complicated conditions. I urge you to ask your current team for advice on where to look locally/regionally. It is not easy to do a web search to find these practices (wouldn’t that be nice). The process of getting ready to transition to adult care should not start right before the 18th or 21st birthday. It should start much earlier. By the ages of 12 – 14, the plans and skills needed

for this transition should begin to take hold. One great source of information on this is www.gottransition.org • ABOUT THE AUTHOR: Dr. Allen Friedland is a medicine/pediatrics doctor in Newark, Delaware and is affiliated with Christiana Care Hospital. He received his medical degree from University at Buffalo, School of Medicine and Biomedical Sciences and has been in practice for more than 20 years, and is one of 15 doctors at Christiana Care Hospital who specialize in Medicine/Pediatrics.

PART INFO GETTING

PLUS

PART IDEA

SHARING

Equals total government connecting.

USA.gov is your official source for federal, state and local government information. You’ll find answers to questions on everything from Social Security and government auctions to product recalls and travel advisories. And it’s also the place to share ideas with your government, or simply let us know what you think. To make your total government connection, visit USA.gov. A public service message from the U.S. General Services Administration.

Adaptive Recreation Organizations

THE FOLLOWING NATIONAL ORGANIZATIONS offer adaptive sports and recreational activities and/or information on these topics for people of many abilities. In addition to providing a variety of opportunities for fun and social interaction, some of the listed organizations also offer support groups. Most have local chapters or they can provide referrals to other local organizations, which offer similar activities. USING THIS DIRECTORY Numbers correspond to items listed in the Key to Services. When available, email addresses and Web sites have been included. (Unless otherwise indicated, all telephone numbers are for voice only.) This directory is current as of December 2016.

Camping/Outdoor Activities ADAPTIVE SPORTS CENTER PO Box 1639 Crested Butte, CO 81224 (866) 349-2296 (970) 349-5075 (970) 349-2077 (FAX) [email protected] www.adaptivesports.org AMERICAN CAMP ASSOCIATION 5000 State Rd. 67 North Martinsville, IN 46151-7902 (765) 342-8456 (800) 428-2267 (765) 342-2065 (FAX) [email protected] www.campparents.org 1,2,4,5,6,7,8,9 English, Spanish BOY SCOUTS OF AMERICA Adryn Shackelford 1325 West Walnut Hill Lane PO Box 152079 Irving, TX 75015-2079 (972) 580-2367 (972) 580-2079 (FAX) www.boyslife.org 2,5,6 English BRECKENRIDGE OUTDOOR EDUCATION CENTER Claire DiCola PO Box 697 Breckenridge, CO 80424 (970) 453-6422 (800) 383-2632BOEC (970) 453-4676 (FAX) [email protected] www.boec.org 1,2,5 English COOPERATIVE WILDERNESS HANDICAPPED OUTDOOR GROUP (C.W. HOG) 921 S. 8th Ave, Stop 8128 Pocatello, ID 83209 (208) 282-3912 (208) 282-2127 (FAX) [email protected]

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

GIRL SCOUTS OF THE USA 420 5th Ave. New York, NY 10018-2798 (800) 478-7248 (212) 852-8000 www.girlscouts.org INTERNATIONAL WHEELCHAIR AVIATORS Mike Smith 82 Corral Drive Keller, TX 76244 (817) 229-4634 [email protected] www.wheelchairaviators.org 1,2,4,9 English SPLORE ACCESSIBLE OUTDOOR ADVENTURES Janine Donald 4029 Main St, SLC 84107 Salt Lake City, UT 84106 (801) 484-4128 (801) 484-4177 (FAX) [email protected] www.splore.org 1,2,3,4,5 English STEPHEN J. WAMPLER FOUNDATION Stephen J. Wampler 941 Orange Avenue, Suite 440 Coronado, CA 92118 (800) 381-6891 [email protected] www.wamplerfoundation.org VISIONS CENTER ON BLINDNESS VCB Ruben Coellar 500 Greenwich St., 3rd Fl. New York, NY 10013-1354 (212) 625-1616 ext.124 (917) 859-9184 (212) 219-4078 (FAX) [email protected] www.visionsvcb.org 1,2,3,4 English, Spanish, Hebrew, Russian WELLNESS G.I.F.T.S. Sheri Jeffery 7531 County Route 13 Bath, NY 14810 (607) 684-3243 (607) 776-9218 (FAX) [email protected] www.giftsretreats.com 1,2,3,4,8 English WILDERNESS ON WHEELS FOUNDATION Corby Hudson PO Box 1007 Wheat Ridge, CO 80034 (303) 403-1110 [email protected] www.wildernessonwheels.org

34 January 2017 • EP MAGAZINE | eparent.com

Canoeing AMERICAN CANOE ASSOCIATION Martin A. Bartels 503 Sophia Street, Ste 100 Fredericksburg, VA 22401 (540) 907-4460 (888) 229-3792 (FAX) [email protected] www.americancanoe.org 1,2,3,4,5,7 English

Flying FREEDOM’S WINGS INTERNATIONAL Christopher Lynch 4063 Harbour Drive Palmyra, NJ 08065-2114 (717) 335-0458 [email protected] www.freedomswings.org

General Sport AIM (ADVENTURES IN MOVEMENT FOR THE HANDICAPPED) Dr. Jo A. Geiger 945 Danbury Rd. Dayton, OH 45420 (800) 332-8210 (937) 294-4611 (937) 294-3783 (FAX) [email protected] ehandicapped.org www.aimforthehandicapped.org AMERICAN AMPUTEE FOUNDATION INC Kathy Fleshman PO Box 94227 Little Rock, AR 72190 (501) 835-9290 (501) 835-9292 (FAX) [email protected] www.americanamputee.org 2,4 English AMERICAN ASSOCIATION FOR PHYSICAL ACTIVITY & RECREATION Mariah Burton Nelson 1900 Association Drive Reston, VA 20191-1598 (800) 213-7193 (703) 476-3400 (703) 476-9527 (FAX) [email protected] www.aapar.org 1,2,3,4,6,7 English AMERICAN CANCER SOCIETY Suzanne Manning 2008 Charlotte Ave. Nashville, TN 37203 (615) 342-0840 (800) 227-2345 (615) 342-0888 (FAX) www.cancer.org 2,4,5,6,7,8,9 English, Spanish

BENEFICIAL DESIGNS, INC. Seanna Kringan PO Box 69 Mindon, NY 89423 775-783-8822 775-783-8823 (FAX) [email protected] www.beneficialdesigns.com 2,6,7,8,9 English BLAZESPORTS AMERICA Gillian Sharp 1670 Oakbrook Drive, Suite 331 Norcross, GA 30093 (404) 270-2000 (404) 270-2039 (FAX) [email protected] www.blazesports.org 1,2,3,4,5,6,7 COURAGE CENTER 3915 Golden Valley Road 2925 Chicago Avenue Minneapolis, MN 55407 (612) 262-5000 [email protected] www.couragecenter.org English, with interpreters provided for other languages DISABLED SPORTS USA Julia Ray, Program Director 451 Hungerford Dr., Ste. 100 Rockville, MD 20850 (301) 217-0960 (301) 217-9841 (301) 217-0968 (FAX) [email protected] www.disabledsportsusa.org 1,2,4,5 HOUSTON CHALLENGERS Jaime Aguilar 1475 West Gray, Suite 166 Houston, TX 77095 (713) 521-3737 (281) 855-9571 (FAX) [email protected] LEAGUE OF DREAMS, INC. Frank Kolarek 1901 Clifden Rd. Balitmore, MD 21228 (410) 719-1641 [email protected] www.leagueofdreams.org NATIONAL ABILITY CENTER Ryan Jensen PO Box 682799 Park City, UT 84068 (435) 649-3991 (435) 658-3992 (FAX) [email protected] 1,2,3,4,6 English, Spanish and Braille NATIONAL CENTER ON ACCESSIBILITY Sherril York, Executive Director Indiana University Research Park 501 North Morton St, Suite 109 Bloomington, IN 47404-3732 (812) 856-4422 (812) 856-4421 (812) 856-4480 (FAX) [email protected] www.ncaonline.org 1,2,6 NATIONAL CENTER ON HEALTH, PHYSICAL ACTIVITY AND DISABILITY Kelly Bonner 4000 Ridgeway Dr. Birmingham, FL 35209 (800) 900-8086 (205) 313-7475 [email protected] www.ncpad.org 1,2,4,6,9 English, some Spanish, alternative formats for VI

PARALYZED VETERANS OF AMERICA 801 Eighteenth St. NW Washington, DC 20006-3517 (800) 424-8200 (202) 872-1300 (202) 955-8358 (FAX) [email protected] www.pva.org SPECIAL OLYMPICS, INC. Christy Weir 1133 19th Street, N.W. Washington, DC 20036-3604 (202) 824-0307 (202) 738-8511 (202) 824-0200 (FAX) [email protected] www.specialolympics.org 1,2,5,7 U.S. ASSOCIATION OF BLIND ATHLETES (USABA) Mark Lucas 1 Olympic Plaza Colorado Springs, CO 80909 719-866-3221 719-866-3400 (FAX) [email protected] www.usaba.org 1,2,3,4,5,7,8 English

Golf NATIONAL AMPUTEE GOLF ASSOCIATION (NAGA) Bob Wilson 11 Walnut Hill Rd Amherst, NH 03031 (800) 633-6242 (603) 672-6444 (603) 672-2987 (FAX) [email protected] www.nagagolf.org 1,2,6 English

Horseback Riding NEW YORK THERAPEUTIC RIDING CENTER Richard Brodie 336 E. 71st St., 3-D New York, NY 10021 (212) 535-3917 (212) 535-3917 (FAX) [email protected] www.equestria.org 2 English, Spanish PROFESSIONAL ASSOCIATION OF THERAPEUTIC HORSEMANSHIP INTERNATIONAL (PATH INTL.) Andrea Spridgen PO Box 33150 Denver, CO 80233 (800) 369-7433 ext.109 (303) 452-1212 (303) 252-4610 (FAX) [email protected] www.pathintl.org 1,2,4,6

Scuba HANDICAPPED SCUBA ASSOCIATION Jim Gatacre 1104 El Prado San Clemente, CA 92672 (949) 498-4540 [email protected] 1,2,3 English, Spanish

Shooting

Skiing

NRA DISABLED SHOOTING SERVICES National Rifle Association 11250 Waples Mill Rd. Fairfax, VA 22030 (703) 267-1495 (800) 672-3888 (703) 267-3941 (FAX) [email protected] www.nrahq.org/compete/disable d.asp

AMERICAN BLIND SKING FOUNDATION Jim Hynan 609 Crandell Lane Schaumburg, IL 60193 (312) 409-1605 [email protected] www.absf.org NATIONAL SPORTS CENTER FOR THE DISABLED Beth Fox PO Box 1290 Winter Park, CO 80482 (970) 726-1540 (303) 316-1540 (970) 726-4112 (FAX) [email protected] www.nscd.org 2

SKI FOR LIGHT, INC. Anne Marie Cooke 1455 West Lake Street Minneapolis, MN 55408 (612) 827-3232 [email protected] www.sfl.org US DISABLED SKI TEAM Sandy Metzger 1 Victory Lane PO Box 100 Park City, UT 84060 (801) 619-0909 (435) 649-3613 (FAX) [email protected] www.usskiteam.com 6,7 English





Softball

Table Tennis

NATIONAL WHEELCHAIR SOFTBALL ASSOCIATION Bruce Froendt 13414 Paul Street Omaha, NE 39351 (402) 305-5020 [email protected] www.wheelchairsoftball.org 2,3,4,5,6

WHEELCHAIR AND AMBULATORY SPORTS USA Susan Rossi PO Box 621023 Littleton, CO 80162 (720) 412-7979 (914) 879-5184 (866) 204-8018 [email protected] www.wasusa.org

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry



HMS School for Children with Cerebral Palsy is a day and residential school for students up to age 21 who have complex, multiple disabilities.

$VNXVDERXWIXQGLQJRSWLRQV     www.hmsschool.org | 215-222-2566 Philadelphia, PA eparent.com | EP MAGAZINE • January 2017 35

Alliance for Technology Access

THE ALLIANCE FOR TECHNOLOGY ACCESS (ATA) The Alliance for Technology Access (ATA) is a national network of technology resource centers, community-based organizations, technology vendors, and individuals who are committed to increasing the use of technology by children and adults with disabilities and functional limitations. The mission of the ATA is to increase the use of technology by children and adults with disabilities and functional limitations. ATA encourages and facilitates the empowerment of people with disabilities to participate fully in their communities. Through public education, information and referral, capacity building in community organizations, and advocacy/policy efforts, the ATA enables millions of people to live, learn, work, define their futures, and achieve their dreams. ATA was conceived in 1983 by a group of parents and professionals in northern California in response to the needs of a five-year-old child with cerebral palsy who, it was believed, would benefit from the coming technology revolution. From this small group of parents, consumers, and professionals, the ATA has grown into one of the nation’s largest resources to help children and adults who have disabilities and functional limitations gain access to the benefits of assistive technology In 1987, the group was joined by a major technology company to form the Alliance for Technology Access, with 11 charter member resource centers in 10 states. In 1989, ATA was established as an independent nonprofit organization. All 41 nonprofit ATA Technology Resource Centers are operated through a collaboration of people with disabilities, family members, and professionals in related fields. All are barrier-free in architecture as well as in attitude, and are committed to providing services, information, and referrals for everyone who contacts them. ATA’s vendor members include companies who manufacture both mainstream and assistive technology. Associate members include a wide range of individuals and organizations who work in their own communities and seek ways to support ATA’s mission. Join ATA now and become part of this vital nationwide network with the most up-to-date information about assistive technology. Your membership will include a subscription to ATA’s listserv where you can read and participate in discussions about assistive technology. You can post questions yourself or help others who are looking for information. You also will be eligible for significant discounts on major assistive technology conferences and save up to 50% on registration fees. Most importantly, you will be connected to a network of valuable resources and people committed to increasing access to assistive technology for people with disabilities and functional limitations. Visit ATA’s website, http://www.ATAccess.org, to find a wealth of assistive technology resources and information. There, you will find the HUB, a searchable and interactive database of companies who manufacture and sell assistive technology. Also you can read about ATA’s book, Computer Resources for People with Disabilities, a valuable guide to exploring assistive technology. To speak with a representative of the ATA, contact their national office: 1.800.914.3017 (phone), [email protected] (email), or by TTY at 731.554.5284. This listing was provided by the ATA. When available, Web sites and email addresses have been included. (Unless otherwise indicated, all telephone numbers are for voice only.) Current as of December 2016.

Alabama

Arizona

TECHNOLOGY ASSISTANCE FOR SPECIAL CONSUMERS 1856 Keats Dr. Huntsville, FL 35810 AT Program Manager: Laura Parks (256) 859-8300 [email protected] [email protected] www.ucptasc.org

TECHNOLOGY ACCESS CENTER OF TUCSON, INC. 4710 East 29th Street PO Box 13178 Tucson, AZ 85732-3178 Director: Madeline Edwards (520) 638-2733 (520) 519-7954 (FAX) [email protected] uacoe.arizona.edu/tact

Arkansas

California

ARKANSAS EASTER SEALS SOCIETY TECHNOLOGY RESOURCE CENTER 3920 Woodland Heights Road Little Rock, AR 72212-2495 Director: Bryan Ayres (501) 227-3600 (501) 227-3610 (501) 227-3601 (FAX) [email protected] [email protected] www.ar.easterseals.com

CENTRAL COAST ASSISTIVE TECHNOLOGY CENTER 3450 Broad St., Suite 111 San Louis Obispo, CA 93401 Director: Paul J. Mortola (805) 549-7420 (805) 549-7423 (FAX) [email protected] www.ccatc.org

36 January 2017 • EP MAGAZINE | eparent.com

CENTER FOR ACCESSIBLE TECHNOLOGY 3075 Adeline, Suite 220 Berkeley, CA 97403 Director: Dmitri Belser, ATA Board Member (510) 841-3224 (510) 841-7956 (FAX) [email protected] www.cforat.org EMPOWERTECH 9100 S. Sepulveda, Suite 204 Los Angeles, CA 90045 Director: Joan Elaine Anderson (310) 338-1597 (310) 338-9318 (FAX) [email protected] [email protected] www.empowertech.org ITECH - PARENTS HELPING PARENTS Sobrato Center for Nonprofits San Jose 1400 Parkmoor Ave., Suite 100 San Jose, CA 95126 Director: Janet Nunez (408) 727-5775 (408) 286-1116 (FAX) [email protected] www.php.com

SAN DIEGO ASSISTIVE TECHNOLOGY CENTER United Cerebral Palsy Association 6162 Mission Gorge Rd., Suite F San Diego, CA 92123 Director: Mary Krieger (858) 278-5420 (619) 282-5133 (FAX) [email protected] www.ucpsdtechcenter.org TEAM OF ADVOCATES FOR SPECIAL KIDS 100 W. Cerritos Ave. Anaheim, CA 92805 Director: Laura SimmonsMartinez (714) 533-8275 (714) 533-2533 (FAX) [email protected] www.taskca.org TRANSACCESS 1150 S. Bascom Ave., Suite 7A San Jose, CA 95128 Director: Maria Nicolacoudis (408) 278-2000 (408) 278-2010 (FAX) [email protected] www.transaccess.org KERN ASSISTIVE TECHNOLOGY CENTER 3101 N. Sillect Ave., Suite 115 Bakersfield, CA 93308 Director: Aaron Markovits (661) 861-1346 (661) 328-9940 (FAX) [email protected] kernatcenter.org ASSISTIVE TECHNOLOGY EXCHANGE CENTER (ATEC) 1601 East St. Andrew Place Santa Ana, CA 92705 ATEC Manager: Lauren Wetzler (714) 361-6200 (714) 361-6220 (FAX) [email protected] www.atec-oc.org

Connecticut NEAT CENTER AT OAK HILL 120 Holcomb Street Hartford, CT 06112 Director: Jennifer Baker (860) 243-2869 (860) 286-3111 (FAX) [email protected] www.neatmarketplace.org

Florida LIGHTHOUSE CENTRAL FLORIDA, INC. 215 E. New Hampshire St. Orlando, FL 32804 Director: Lee Nasehi AT Specialist: David Ushiro, ATA Board Member (407) 898-2483 (407) 895-5255 (FAX) [email protected] www.lighthousecentralflorida.org

Hawaii ALOHA SPECIAL TECHNOLOGY ACCESS CENTER 710 Green St. Honolulu, HI 96813 Director: Eric Arveson (808) 523-5547 [email protected] www.alohastac.org

Illinois NICAT - NORTHERN ILLINOIS CENTER FOR ADAPTIVE TECHNOLOGY 3615 Louisiana Rd Rockford, IL 61108 Director: Dave Grass (815) 289-3219 [email protected]

Indiana ASSISTIVE TECHNOLOGY TRAINING AND INFORMATION CENTER 1721 Washington Ave. Vincennes, IN 47591 Director: Patricia Stewart (812) 886-0575 (877) 96-ATTIC (812) 886-1128 (FAX) [email protected] www.atticindiana.org

Kansas THE SOLUTION OUTREACH CENTER AT OCCK, INC. 1710 West Schilling Road PO Box 1160 Salina, KS 67401 Director: Kathy Reed (785) 827-9383 (785) 823-2015 (FAX) [email protected] [email protected] www.occk.com

Kentucky BLUEGRASS TECHNOLOGY CENTER 409 Southland Dr. Lexington, KY 40503 Director: Debbie Sharon (859) 294-4343 (800) 209-7767 (866) 576-9625 (FAX) [email protected] www.bluegrass-tech.org WESTERN KENTUCKY ASSISTIVE TECHNOLOGY CENTER (WKATC) 815 Triplett Street PO Box 1688 Owensboro, KY 42303 Director: Cindy Huston (270) 689-1738 (270) 852-1491 (FAX) [email protected] www.wkatc.org ENTECH: ENABLING TECHNOLOGIES OF KENTUCKIANA 851 S. Fourth Street Louisville, KY 40203 Director: Dr. David Rogers (502) 585-9911 [email protected] spalding.edu/academics/entech/

Maryland V-LINC 2301 Argonne Dr. Baltimore, MD 21218 Director: Theo Pinette (410) 554-9134 (410) 261-2907 (FAX) [email protected] www.v-linc.org

Maine

New Jersey

Ohio

ALLTECH 400 Riverside Street, Suite A4 Portland, ME 04103 Program Coordinator: Lisa Penney (207) 321-6080 ext.3314 [email protected] [email protected] alltech-tsi.org

EASTER SEALS TECHNOLOGY RESOURCE CENTER 1133 Edwin C. Moses Blvd., Suite 370 Dayton, OH 45417 Director: Kevin Leonard (937) 461-3305 (937) 461-6304 (FAX) [email protected] www.assistivetechservices.org

MICHIGAN’S INTEGRATED TECHNOLOGY SUPPORTS (MITS) 6412 Centurion Drive, Suite 100 Lansing, MI 48917 Director: Jeff Diedrich (517) 908-3930 (517) 908-0709 (FAX) [email protected] [email protected] [email protected] mits.cenmi.org

TECHCONNECTION ASSISTIVE TECHNOLOGY SOLUTIONS c/o Family Resource Associates, Inc. 35 Haddon Avenue Shrewsbury, NJ 07702-4007 Director: Joanne Castellano (732) 747-5310 (732) 747-1896 (FAX) [email protected] www.frainc.org CENTER FOR ASSISTIVE TECH & INCLUSIVE ED STUDIES (CATIES) The College of New Jersey PO Box 7718 Ewing, NJ 08628-0718 Director: Amy Dell (609) 771-3016 (609) 637-5179 (FAX) [email protected] www.tcnj.edu/~caties

Minnesota

New York

PACER CENTER 8161 Normandale Blvd Minneapolis, MN 55437 Director: Bridget Gilormini (952) 838-9000 (952) 838-0199 (FAX) [email protected] www.pacer.org

RESOURCE CENTER FOR INDEPENDENT LIVING PO Box 210 401-409 Columbia Street Utica, NY 13503-0210 Director: Burt Danovitz (315) 797-4642 (315) 797-4747 (FAX) [email protected] www.rcil.com UNIVERSITY AT BUFFALO, CENTER FOR ASSISTIVE TECHNOLOGY (UB/CAT) 3108 Main Street, 18 Kimball Tower Buffalo, NY 14214 Director: Tina Oddo (716) 836.0230 (716) 836.0105 (FAX) [email protected] cat.buffalo.edu

Michigan

Montana PARENTS, LET’S UNITE FOR KIDS (PLUK) 516 N 32nd St Billings, MT 59101 Director: Roger Holt (406) 255-0540 (406) 255-0523 (FAX) [email protected] www.pluk.org

Rhode Island TECHACCESS OF RHODE ISLAND 110 Jefferson Blvd., Suite I Warwick, RI 02888 Director: Judi Carlson (401) 463-0202 (401) 463-3433 (FAX) [email protected] www.techaccess-ri.org

Tennessee EAST TENNESSEE TECHNOLOGY ACCESS CENTER, INC. 116 Childress Street Knoxville, TN 37920 Director: Lois Symington (865) 219-0130 (865) 219-0137 (FAX) [email protected] [email protected] www.discoveret.org/ettac MID-SOUTH ACCESS CENTER FOR TECHNOLOGY University of Memphis 530 Patterson Hall, Rm 119 Memphis, TN 38152 Director: Lavonnie Claybon (901) 678-1489 (901) 678-3215 (FAX) [email protected] www.memphis.edu/act





SIGNAL CENTER’S ASSISTIVE TECHNOLOGY CENTER 2300 Bailey Avenue Chattanooga, TN 37404 Director: Sarah Mak (423) 629-4174 ext. 26 (423) 624-1365 (FAX) [email protected] http://www.signalatcenter.org/ TECHNOLOGY ACCESS CENTER 475 Metroplex Dr., Suite 301 Nashville, TN 37211 Director: Bob Kibler (615) 248-6733 (615) 259-2536 (FAX) [email protected] [email protected] www.tacnashville.org WEST TENNESSEE SPECIAL TECHNOLOGY ACCESS RESOURCE CENTER (STAR) 1119 Old Humboldt Road Jackson, TN 38305 Director: Margaret Doumitt (731) 668-3888 [email protected] www.starcenter.tn.org

U.S. Virgin Islands VIRGIN ISLANDS RESOURCE CENTER FOR THE DISABLED, INC. PO Box 308427 St. Thomas, VI 00803-8427 Director: Patricia Samuel (340) 777-2253 (St. Thomas) (340) 713-2253 (St. Croix) (340) 713-2254 (FAX) [email protected] www.vircd.net

Utah THE COMPUTER CENTER FOR CITIZENS WITH DISABILITIES c/o Utah Center for Assistive Technology 1595 West 500 South Salt Lake City, UT 84104 Director: Craig Boogaard (801) 887-9380 (801) 887-9382 (FAX) [email protected] www.usor.utah.gov:81/ucat



eparent.com | EP MAGAZINE • January 2017 37

Matching Resources

THIS DIRECTORY OF MATCHING RESOURCES – both national and international – can help parents who have children with extremely rare conditions or unique combinations of disabilities. Others may be dealing with particular family situations such as single parenting, raising twins, or adoption. These networking organizations do parent-toparent matching based on children’s disabilities and, in some cases, other family situations. Most maintain ongoing contact with other groups worldwide. Unless otherwise noted, all services are provided free of charge. This directory is current as of December 2016.

BIRTH DEFECT RESEARCH FOR CHILDREN Betty Mekdeci 976 Lake Baldwin Lane, Suite 104 Orlando, FL 32814 (407) 895-0802 [email protected] www.birthdefects.org 1,2,3,7,9 English CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD) 39351 151 Bloor St W, Suite 600 Toronto, ON M5S 1S4 (416) 969-7464 (416) 969-7420 (FAX) [email protected] www.raredisorders.ca English, French

EASTER SEALS NATIONAL HEADQUARTERS Jim Williams 233 South Wacker Drive, Suite 2400 Chicago, IL 60606 (312) 726-6200 (800) 221-6827 (312) 726-1494 (FAX) www.easter-seals.org EASTER SEALS SOCIETY One Concorde Gate, Suite 700 Toronto, ON M3C 3N6 (416) 932-8382 (416) 421-8377 (416) 696-1035 (FAX) [email protected] www.easterseals.org

38 January 2017 • EP MAGAZINE | eparent.com

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) Audrey Ashley 55 Kenosia Avenue Danbury, CT 06813-1968 (800) 999-6673 (203) 744-0100 (203) 798-2291 (FAX) [email protected] www.rarediseases.org English PROTEUS SYNDROME FOUNDATION Kim Hoag 4915 Dry Stone Dr. Colorado Springs, CO 80923 (719) 660-1346 [email protected] teus-syndrome.org 1,2,3,4,6,8 English, translation assistance when possible

KEY TO SERVICES 1. Periodical/newsletter 2. Informational materials 3. Networking/matching 4. Referrals to local resources 5. Local chapters 6. National conferences 7. National advocacy efforts 8. Fund research 9. Maintain research registry

Family-to-Family Health Information Centers

Family Voices, Inc. The mission of Family Voices is to ensure family-centered care for all children with special health care needs and disabilities. Family Voices provides families with resources to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care. At the core of Family Voices are grassroots families supported by the Family-to-Family Health Information Centers (F2F HICs) and State Affiliate Organizations (SAOs). National Family Voices is connected to individual families from whom we learn and to whom we can provide information. Family Voices representatives in each state and territory assist families with issues related to the health care of a child or youth with a special health care need or disability. Family Voices hosts the National Center for Family/Professional Partnerships, a project funded by the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), that provides technical assistance and training to support the work of Familyto-Family Health Information Centers across the country in helping families of children and youth with special health care needs (CYSHCN). More information is available at www.familyvoices.org, or www.fv-ncfpp.org, or by calling 1-888-835-5669. Family Voices State Affiliate Organizations (SAOs) SAO’s are nonprofit, family-led advocacy organizations committed to the mission, vision and principles of Family Voices. SAOs engage in systems change in their state and at the national level to improve the quality of health care for CYSHCN and their families. There are 45 SAOs nationwide. Most F2F HICs are also SAOs. Family-to-Family Health Information Centers (F2F HICs) F2F HICs are federally-designated, family-led and staffed organizations that assist families of CYSHCN and the professionals who serve them. F2F HICs provide support, information, resources, and training around health issues to directly assist families as well as to improve systems by providing guidance on health programs and policy. F2F HICs are uniquely able to help families because they are staffed by family members who have firsthand experience navigating the maze of health care services and programs for CYSHCN. This intimate understanding of the issues that families face when accessing care makes F2F HIC staff exceptionally qualified to help families navigate health systems and make informed decisions. Some F2F HICs are independent nonprofits; others are part of collaborative nonprofit organizations or state agencies. All F2F HICs have a strong commitment to and expertise about CYSHCN. How are F2F HICs Funded? The F2F HIC grant program was established in all States and the District of Columbia by authorization of the Family Opportunity Act (part of the Deficit Reduction Act, 2005) and funding has been extended by subsequent laws through FY 2017. Grants are administered through a competitive grant process by the U.S. Department of Health and Human Services, HRSA, MCHB, Division of Services for Children with Special Health Needs. Each F2F HIC is awarded approximately $95,700 annually. How do F2F HICs help? Each F2F HIC is unique, reflecting the needs and character of the community and state that it serves. Organizational structure, locations, partnerships, and specific initiatives may vary. However, all F2F HICs provide: • Assistance to families and professionals in navigating health care systems • Information, education, training, support and referral services • Outreach to underserved/underrepresented populations • Guidance on health programs and policy • Collaboration with other F2F HICs, family groups, and professionals in efforts to improve services for CYSHCN • Evaluation and outcome assessment What are some of the typical questions that a parent or professional might ask a F2F HIC? • Is there a health insurance program that will pay for my child’s medical needs? How do I enroll? • How will the Affordable Care Act affect me?

• Medicaid has denied payment of some of my child’s services. What do I do now? • My child is very medically complicated. How can I best work with her doctors? • Where can I find a support group for families of children with my child’s disability? • How can you help us to develop a Family Advisory Committee at our hospital? • Do you have materials appropriate for our growing immigrant community? • We'd like to set up a family-faculty training program. Can you help? Family Voices Resources 1. Family-to-Family Health Information Centers: Descriptions and contact information for the F2F HIC in each state and the District of Columbia. http://www.fv-ncfpp.org/f2fhic/find-a-f2f-hic/ 2. 2. 2014-2015 F2F Data Report: A report that provides highlights of data reported by F2F HICs in 2014-2015 demonstrating their value and impact in helping families of CYSHCN. Data includes counts of families and professionals assisted, kinds of information provided, and ratings of partnership activity. Stories of real families are included. http://www.fv-ncfpp.org/files/5214/6386/4403/2014-2015 F2FReport_05-16-2016-r.pdf 3. ACA Information and Tip Sheets: Information to help families understand what the Affordable Care Act means to them, particularly for families of children and youth with special health care needs. Popular tip sheets include Health Disparities, People with Disabilities, and How the ACA can Help; How Health Care is Funded: What Families Need to Know; and Resources to Help Families Obtain Coverage. http://www.fv-ncfpp.org/blog/ 4. Washington Update: A free weekly e-digest of timely and relevant policy issues and events for families of children and youth with special health care needs and the professionals who serve them. http://www.familyvoices.org/action/keep_informed 5. Friday’s Child: A free newsletter for families, family leaders, and professionals that provides news, information, and resources on such topics as leadership, partnership, and mentoring. http://www.familyvoices.org/action/fridays_child 6. Family-Centered Care Assessment: A validated tool to help measure the family-centeredness of health care services from providers http://www.fv-ncfpp.org/activities/fcca/ 7. Bright Futures Family Pocket Guide (English and Spanish): A convenient pocket size guide of 161 pages of tips and resources to help families raise healthy children. Spanish versions are still available. Watch for updates on English versions when they become available. http://www.fv-impact.org/publications/pocket-guide/ This directory is current as of December 2016

eparent.com | EP MAGAZINE • January 2017 39

Family-to-Family Health Information Centers

Alabama (F2F, SAO)

District of Columbia (F2F)

Idaho (F2F, SAO)

Maryland (F2F, SAO)

Missouri (F2F)

FAMILY VOICES OF ALABAMA 1050 Government Street, Mobile, AL 36604 (877) 771-3862 (877) 771-3862 (FAX) www.familyvoicesal.org www.facebook.com/pages/Family -Voices-of-Alabama/ 103452629687751

ADVOCATES FOR JUSTICE AND EDUCATION 25 E Street, NW, 3rd Fl, Washington, DC 20001 (202) 678-8060 (202) 678-8062 (FAX) www.aje-dc.org www.facebook.com/Advocatesfor-Justice-and-Education-Inc208647622483575

IDAHO PARENTS UNLIMITED, INC. 4619 Emerald, Suite E Boise, ID 83706 (208) 342-5884 (208) 342-1408 (FAX) www.ipulidaho.org www.facebook.com/IdahoParents Unlimited

THE PARENTS’ PLACE OF MARYLAND 801 Cromwell Park Dr, Suite 103 Glen Burnie, MD 21061 (410) 768-9100 (410) 768-0830 (FAX) www.ppmd.org www.facebook.com/pages/TheParents-Place-ofMaryland/96206668666

MISSOURI FAMILY-TO-FAMILY RESOURCE CENTER AT UMKC-IHD 215 S. Pershing, 6th Floor, Kansas City, MO 64108 (816) 235-1763 (888) 503-3107 (FAX) www.mofamilytofamily.org www.facebook.com/mofamily2fa mily

Maine (F2F)

Mississippi (F2F, SAO)

MAINE PARENT FEDERATION PO Box 2067 Augusta, ME 04338 (207) 588-1933 (207) 588-1938 (FAX) www.mpf.org www.facebook.com/pages/Maine -Parent-FederationINC/112810502110284

FAMILY VOICES OF MISSISSIPPI/INSTITUTE FOR DISABILITY STUDIES, THE UNIVERSITY OF SOUTHERN MISSISSIPPI 3825 Ridgewood Road Jackson, MS 39211 (601) 432-6876 (601) 432-6974 (FAX) www.usm.edu/disabilitystudies/family-2-family-overview www.usm.edu/sites/default/files/g roups/institute-disabilitystudies/images/healthdayflyer.pdf

Alaska (F2F, SAO)

District of Columbia (SAO)

STONE SOUP GROUP 307 East Northern Lights Boulevard, Suite 100 Anchorage, AK 99503 (907) 561-3701 (907) 561-3702 (FAX) www.stonesoupgroup.orgwww.fac ebook.com/stonesoupgroup

FAMILY VOICES OF THE DISTRICT OF COLUMBIA INC. 1914 Mississippi Avenue, SE Washington, DC 20020 (202) 681-7761 877-693-9810 (FAX) www.familyvoicesofdc.org

Arkansas (F2F)

Delaware (F2F, SAO)

ARKANSAS DISABILITY COALITION 1501 N. University Ave, Suite 268 Little Rock, AR 72207 (501) 614-7020 (501) 614-9082 (FAX) www.adcpti.org

DELAWARE FAMILY VOICES, INC. 222 Philadelphia Pike #11, Wilmington, DE 19809 (302) 669-3031 (302) 478-3350 (FAX) www.defv.org www.facebook.com/DelawareFam ilyVoices

Arizona (F2F, SAO) RAISING SPECIAL KIDS 5025 East Washington, Suite 204 Phoenix, AZ 85034-2005 (602) 242-4366 (602) 242-4306 (FAX) www.raisingspecialkids.org www.facebook.com/pages/Raisin g-Special-Kids/205979790240

California (F2F, SAO)

Florida (F2F, SAO) FAMILY NETWORK ON DISABILITIES 2196 Main Street, Suite K Dunedin, FL 34698-5694 (727) 523-1130 (727) 523-8687 (FAX) www.fndfl.org

Georgia (F2F)

FAMILY VOICES OF CALIFORNIA, SUPPORT FOR FAMILIES OF CHILDREN WITH DISABILITIES 1663 Mission St., 7th Floor San Francisco, CA 94103 (415) 282-7494 (415) 282-1226 (FAX) www.familyvoicesofca.org www.facebook.com/familyvoiceso fca/

PARENT TO PARENT OF GEORGIA 3070 Presidential Parkway, Ste 130 Atlanta, GA 30340 (770) 451-5484 (770) 458-4091 (FAX) www.p2pga.org www.facebook.com/pages/Parent -to-Parent-ofGeorgia/102990958844

Colorado (F2F, SAO)

Hawaii (F2F)

FAMILY VOICES COLORADO 7303 S. Alton Way, Unit A Centennial, CO 80112 (303) 733-3000 (303) 733-3344 (FAX) www.familyvoicesco.org www.facebook.com/FamilyVoices Colorado

HILOPA'A FAMILY TO FAMILY HEALTH INFORMATION CENTER 1319 Punahou Street, Room 742 Honolulu, HI 96826 (808) 791-3467 (808) 531-3595 (FAX) www.hilopaa.org

Connecticut (F2F, SAO)

Iowa (F2F, SAO)

PATH PARENT TO PARENT/ FAMILY VOICES OF CT PO Box 117 Northford, CT 06472-0117 (203) 234-9554 (203) 234-1876 (FAX) www.pathct.org www.facebook.com/PATHCT

FAMILY TO FAMILY IOWA AT ASK RESOURCE CENTER 5665 Greendale Road, Suite D, Johnston, IA 50131-1592 (515) 243-1713 (515) 243-1902 (FAX) www.askresource.org www.facebook.com/askresourcec enter

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Illinois (F2F, SAO) FAMILY VOICES ILLINOIS/THE ARC OF ILLINOIS F2FHIEC 20901 South LaGrange Rd, #209 Frankfort, IL 60423 (708) 560-6703 (815) 464-5292 (FAX) www.familyvoicesillinois.org

Indiana (F2F, SAO) FAMILY VOICES INDIANA 445 N Pennsylvania St, Ste 941 Indianapolis, IN 46204 (317) 944-8982 (317) 944-9760 (FAX) www.fvindiana.org www.facebook.com/fvindiana

Kansas (F2F, SAO) FAMILIES TOGETHER, INC. 3033 W 2nd, Room 122 Wichita, KS 67203 (316) 945-7747 (316) 945-7795 (FAX) www.familiestogetherinc.org www.facebook.com/FamiliesToge therInc

Kentucky (F2F, SAO) KENTUCKY FAMILY TO FAMILY HEALTH INFORMATION CENTER 310 Whittington Parkway, Ste 200 Louisville, KY 40222 (502) 429-4430 (502) 429-7161 (FAX) www.KYF2F.com

Louisiana (F2F, SAO) BAYOU LAND FAMILIES HELPING FAMILIES PO Box 1345, Thibodaux, LA 70302-1345 (985) 447-4461 985-447-7988 (FAX) www.blfhf.org www.facebook.com/blfhf

Massachusetts (F2F, SAO) MASS FAMILY VOICES AT FEDERATION FOR CHILDREN WITH SPECIAL NEEDS The Schrafft Building 529 Main Street, Suite 1M3 Boston, MA 02129 (617) 236-7210 (617) 241-0330 (FAX) www.massfamilyvoices.org www.facebook.com/fcsnfb

Maine (SAO) NEW DIRECTIONS FOR MAINE FAMILIES P.O. Box 18 Lincolnville, ME 04849 (207) 358-9005 www.nd4me.org/

Michigan (F2F) MICHIGAN PUBLIC HEALTH INSTITUTE 2436 Woodlake Circle Okemos, MI 48864 (517) 324-8366 (517) 347-6189 (FAX) https://f2fmichigan.org www.facebook.com/MIF2F

Michigan (SAO) FAMILY VOICES OF MICHIGAN 1325 S. Washington Lansing, MI 48910 (800) 292-7851 ext 472 michiganfamilyvoices.org www.facebook.com/pages/Michigan -Family-Voices/517493244973999 ?ref=tn_tnmn

Minnesota (F2F) PACER CENTER (PARENT ADVOCACY COALITION FOR EDUCATIONAL RIGHTS) 8161 Normandale Boulevard Minneapolis, MN 55437-1044 (952) 838-9000 (952) 838-0199 (FAX) www.pacer.org www.facebook.com/PACERCenter

Minnesota (F2F, SAO) FAMILY VOICES OF MINNESOTA PO Box 2234 Stillwater, MN 55082 (866) 334-8444 www.familyvoicesofminnesota.org www.facebook.com/FamilyVoices MN?ref=hl

Montana (F2F, SAO) PARENTS, LET’S UNITE FOR KIDS 516 North 32nd Street, Billings, MT 59101 (406) 255-0540 (406) 255-0523 (FAX) www.pluk.org

North Carolina (F2F, SAO) EXCEPTIONAL CHILDREN’S ASSISTANCE CENTER (ECAC) 907 Barra Row, Suite 102-013 Davidson, NC 28036-8104 (704) 892-1321 (704) 892-5028 (FAX) www.ecac-parentcenter.org www.facebook.com/pages/ECACNorth-Carolinas-ParentCenter/135451317182

North Dakota (F2F, SAO) FAMILY VOICES OF NORTH DAKOTA PO Box 163 312 2nd Avenue W Edgeley, ND 58433 (701) 493-2634 (701) 493-2635 (FAX) www.fvnd.org

Nebraska (F2F, SAO) PTI NEBRASKA 2564 Leavenworth St, Suite 202 Omaha, NE 68105 (402) 403-3908 (402) 934-1479 (FAX) www.pti-nebraska.org www.facebook.com/PTINebraska

New Hampshire (F2F, SAO) NEW HAMPSHIRE FAMILY VOICES 129 Pleasant St, Thayer Bldg. Concord, NH 03301 (603) 271-4525 (603) 271-4902 (FAX) www.nhfv.org www.facebook.com/NewHampshire-Family-Voices110259496380

New Jersey (F2F, SAO)

Pennsylvania (F2F, SAO)

Virginia (F2F)

STATEWIDE PARENT ADVOCACY NETWORK (SPAN) 35 Halsey Street, 4th Floor Newark, NJ 07102 (973) 642-8100 (973) 642-8080 (FAX) www.spanadvocacy.org www.facebook.com/parentadvoca cynetwork?fref=ts

PARENT EDUCATION & ADVOCACY LEADERSHIP (PEAL) CENTER 1119 Penn Avenue, Suite 400 Pittsburgh, PA 15222 (412) 281-4404 (412) 281-4408 (FAX) www.pealcenter.org www.facebook.com/pages/ThePEAL-Center/246300253800 ?ref=ts

FAMILY TO FAMILY NETWORK OF VIRGINIA - PARTNERSHIP FOR PEOPLE WITH DISABILITIES 700 E. Franklin Street, 1st Floor Richmond, VA 23219 (804) 828-0352 (804) 827-0107 (FAX) www.centerforfamilyinvolvement. org www.facebook.com/pages/Center -for-FamilyInvolvement/227786620683267?f ref=ts

New Mexico (F2F, SAO) PARENTS REACHING OUT PRO 1920 B Columbia Drive SE, Albuquerque, NM 87106 (505) 247-0192 (505) 247-1345 (FAX) www.parentsreachingout.org

Nevada (F2F, SAO) FAMILY TIES OF NEVADA 3100 Mill Street, Suite #117 Reno, NV 89502 (775) 823-9500 (775) 323-2205 (FAX) www.familytiesnv.org www.facebook.com/pages/Family -TIES-of-Nevada-AuthorizedPage/140528919361353

New York (F2F, SAO) FAMILY VOICES NEW YORK AT PARENT TO PARENT OF NYS 500 Balltown Road, Schenectady, NY 12304 (518) 381-4350 (FAX) www.parenttoparentnys.org www.facebook.com/pages/Parent -to-Parent-of-New-YorkState/139696059381735#!/Parent ToParentNYS

Ohio (F2F) OHIO FAMILY-TO-FAMILY HEALTH INFORMATION CENTER DDBP / UC UCEDD Cincinnati Children’s Hospital Medical Center 3333 Burnet Avenue, MLC 4002 Cincinnati, OH 45229 (513) 803-3846 (513) 803-0072 (FAX) www.ucucedd.org/OhioF2F www.facebook.com/UcUcedd

Oklahoma (F2F, SAO) OKLAHOMA FAMILY NETWORK PO Box 21072 Oklahoma City, OK 73156-1072 (405) 271-5072 www.oklahomafamilynetwork.org www.facebook.com/oklahomafam ilynetwork

Oregon (F2F) OREGON FAMILY-TO-FAMILY HEALTH INFORMATION CENTER 707 SW Gaines Street, CDRC Portland, OR 97239-3011 (503) 494-6961 (503) 494-2755 (FAX) www.oregonfamilytofamily.org www.facebook.com/OregonF2FHIC

Rhode Island (F2F, SAO) RHODE ISLAND PARENT INFORMATION NETWORK (RIPIN) 1210 Pontiac Avenue, Cranston, RI 02920 (401) 270-0101 (401) 270-7049 (FAX) www.ripin.org www.facebook.com/RIParentInfo Network

South Carolina (F2F, SAO)

Vermont (F2F, SAO) VERMONT FAMILY NETWORK 600 Blair Park Road, Suite 240 Williston, VT 05495-7549 (802) 876-5315 (802) 876-6291 (FAX) www.vermontfamilynetwork.org www.facebook.com/VermontFami lyNetwork

Washington (F2F, SAO)

FAMILY CONNECTION OF SOUTH CAROLINA, INC. 1800 St. Julian Place, Suite 104 Columbia, SC 29204 (803) 252-0914 Fax: (866) 4204082 www.familyconnectionsc.org www.facebook.com/FamilyConne ctionofSouthCarolina

PAVE/FAMILY VOICES OF WASHINGTON 6316 S. 12th Street, Tacoma, WA 98465 (800) 572-7368 (253) 565-2266 (FAX) wapave.org www.facebook.com/PAVE.WA

South Dakota (F2F, SAO)

Wisconsin (F2F, SAO)

SOUTH DAKOTA PARENT CONNECTION 3701 W 49th Street, Suite 102 Sioux Falls, SD 57106 (605) 361-3171 (605) 361-2928 (FAX) www.sdparent.org www.facebook.com/sdparentconn ection

FAMILY VOICES OF WISCONSIN PO Box 5070 Madison, WI 53705 (608) 220-9598 www.fvofwi.org www.facebook.com/pages/Family -Voices-ofWisconsin/122509461124135

Tennessee (F2F, SAO)

West Virginia (F2F, SAO)

FAMILY VOICES OF TENNESSEE AT TENNESSEE DISABILITY COALITION 955 Woodland Street Nashville, TN 37206 (615) 383-9442 (615) 383-1176 (FAX) www.tndisability.org www.facebook.com/tndisability

WEST VIRGINIA PARENT TRAINING AND INFORMATION (WVPTI) 99 Edmiston Way – Suite 101-102 Buckhannon, WV 26201 (800) 281-1436 (304) 624-1438 (FAX) www.wvf2f.org

Texas (F2F, SAO)

Wyoming (F2F)

TEXAS PARENT TO PARENT 3710 Cedar Street, Box 12, Suite 229 & 230 Austin, TX 78705-1449 (512) 458-8600 (512) 451-3110 (FAX) www.txp2p.org www.facebook.com/pages/TexasParent-to-Parent/275246185400

WYOMING INSTITUTE FOR DISABILITIES (WIND) 1000 E. University Ave., Department 4298 Laramie, WY 82071-2000 (307) 766-2764 (307) 766-2763 (FAX) www.uwyo.edu/wind www.facebook.com/Wyominginsti tutefordisabilities

Utah (F2F, SAO)

Wyoming (SAO)

UTAH FAMILY VOICES HEALTH INFORMATION CENTER 230 West 200 South, Suite 1101 Salt Lake City, UT 84101 (801) 584-8236 (801) 446-7738 (FAX) www.utahfamilyvoices.org www.facebook.com/Utah-FamilyVoices-229928490380326/? fref=nf

FAMILY VOICES AT WYOMING AT UPLIFT 3701 Ridge Road Cheyenne, WY 82001 (307) 778-8686 www.upliftwy.org/ www.facebook.com/Support4Fam ilies

eparent.com | EP MAGAZINE • January 2017 41

State Assistive Technology Programs

THE ASSISTIVE TECHNOLOGY ACT OF 1998, as amended (P.L. 108-364), provides funding to support grants to states throughout the U.S. and its territories for AT programs. The mission of the state AT programs is to get technology into the hands of those who need it so they can be more independent and improve functional capabilities to reach educational, life, and employment goals. What is Assistive Technology? The term "assistive technology" encompasses all technology used by people with disabilities to perform daily living activities that would otherwise be difficult, inaccessible, or impossible. An assistive technology device is defined as “any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities.” The term assistive technology service means “any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device.” What Services Do the State AT Programs Provide? The 56 State Assistive Technology Act Programs conduct activities to expand access to technology for individuals with disabilities of all ages through comprehensive statewide programs. These activities include the following: • Support statewide financing systems for the purchase, lease, or other acquisition of AT devices and services. • Support device reutilization programs that provide for the exchange, repair, recycling, or other reutilization of AT devices. • Support device loan programs that provide for short-term loans of AT so that individuals can try out devices or fill a temporary need for a device. • Support device demonstration programs that demonstrate a variety of AT devices and services and provide information about vendors, providers, and repair services. • Provide training and technical assistance to promote access to assistive technology devices and services, including outreach support to individuals from under represented and rural populations. • Support public awareness designed to provide a statewide information and referral system related to the availability and benefits of assistive technology devices and services. Promote interagency coordination and collaboration with community-based organizations to improve access to assistive technology devices and services for individuals of all ages who experience a disability. RESNA Catalyst Project RESNA 1700 North Moore Street, Suite 1540 Arlington, VA 22209. (703.524-6686 Toll-free: 866.342.6572 (703.524.6639 (703.524.6630 [email protected] www.resnaprojects.org The RESNA Catalyst Project is a sponsored project of RESNA, the Rehabilitation Engineering and Assistive Technology Society of North America. This list of the 56 Statewide AT Programs is current as of December 2016.

Alabama

Colorado

ALABAMA’S ASSISTIVE TECHNOLOGY RESOURCE Helen Baker 602 S. Lawrence Street Montgomery, AL 36104 (334) 293-7012 (800) 782-7656 (In State) (334) 293-7388 (FAX) [email protected] www.rehab.alabama.gov/star

ASSISTIVE TECHNOLOGY PROGRAM OF COLORADO Cathy Bodine, Ph.D., CCC-SLP Department of Bioengineering 601 East Eighteenth Ave, Ste 130 Denver, CO 80203 (303) 837-1208 (FAX) [email protected] www.AssistiveTechnologyPartner s.org

Alaska

Connecticut

ASSISTIVE TECHNOLOGY FOR ALASKA Mystie Rail 3330 Arctic Blvd, Suite 101 Anchorage, AK99503 (907) 563-2599 (800) 723-ATLA (907) 563-0699 (FAX) [email protected] www.atlaak.org

CONNECTICUT ASSISTIVE TECHNOLOGY PROGRAM Arlene Lugo Bureau of Rehabilitation Services (BRS) 55 Farmington Ave, 12th Floor Hartford, CT 06106 (860) 424-4881 (860) 424-4850 (FAX) [email protected] www.CTtechact.com

American Samoa AMERICAN SAMOA ASSISTIVE TECHNOLOGY SERVICE PROJECT (ASATS) Nathaniel Peau The Office of Vocational Rehabilitation American Samoa Government Pago Pago, AS 96799 (684) 699-1371/72/73 (684) 699-1376 (FAX) [email protected] www.resnaprojects.org/allcontacts/profiles/statewideas.rtf

DELAWARE ASSISTIVE TECHNOLOGY INITIATIVE (DATI) Beth Mineo, Ph.D. Center for Disabilities Studies College of Education and Human Development/University of Delaware Newark, DE 19716 (302) 831-4690 (FAX) [email protected] www.dati.org

Arizona

District of Columbia

ARIZONA TECHNOLOGY ACCESS PROGRAM Jill Pleasant 300 W. Clarendon Ave, Suite 475 Phoenix, AZ 85013 (602) 728-9534 (602) 728-9535 (FAX) [email protected] www.aztap.org

ASSISTIVE TECHNOLOGY PROGRAM FOR THE DISTRICT OF COLUMBIA Alicia C. Johns University Legal Services 220 I Street, NE, Suite 130 Washington, DC 20002 (202) 547-0198 (202) 547-2662 (FAX) [email protected] www.atpdc.org

Arkansas ARKANSAS INCREASING CAPABILITIES ACCESS NETWORK (ICAN) Rick Anderson 900 W. 7th Street Little Rock, AR 72201 (501) 683-3005 (800) 828-2799 (In State) (501) 666-5319 (FAX) [email protected] www.ar-ican.org

California CALIFORNIA/ABILITY TOOLS Kim Cantrell CFILC 1000 G Street, Suite 100 Sacramento, CA 95814 (916) 325-1690 (916) 325-1699 (FAX) [email protected] www.abilitytools.org

42 January 2017 • EP MAGAZINE | eparent.com

Delaware

Florida FLORIDA ALLIANCE FOR ASSISTIVE SERVICES AND TECHNOLOGY, INC (FAAST) Michael J. Daniels 3333 West Pensacola Street, Bldg 100, Suite 140 Tallahassee, FL 32304 (850) 487-3278 ext 102 (888) 788-9216 (In State) (850) 575-4216 (FAX) [email protected] www.faast.org

Georgia GEORGIA TOOLS FOR LIFE Carolyn Phillips The Alternative Media Access Center (AMAC) Georgia Institute of Technology Enterprise Innovation Institute [EI2] Atlanta, GA 30318 (404) 894-8323 [email protected] www.gatfl.gatech.edu

Guam

Kansas

Michigan

Nevada

North Dakota

GUAM SYSTEM FOR ASSISTIVE TECHNOLOGY Carla Torres University of Guam Guam CEDDERS Hse.19 Office of Graduate Studies 303 University Drive Mangilao, GU 96913 (671) 734-8378 [email protected] www.www.gsatcedders.org

ASSISTIVE TECHNOLOGY FOR KANSANS PROGRAM Sara Sack 2601 Gabriel Parsons, KS 67357 (620) 421-8367 (800) 526-3648 (In State) (620) 421-0954 (FAX) [email protected] www.atk.ku.edu

MICHIGAN ASSISTIVE TECHNOLOGY PROJECT Kathryn Wyeth c/o Michigan Disability Rights Coalition 3498 East Lake Lansing Road Suite 100 East Lansing, MI 48823 (517) 333-2677 (FAX) [email protected] www.copower.org

NEVADA ASSISTIVE TECHNOLOGY COLLABORATIVE John Rosenlund Department of Human Resources Aging and Disability Services Division Carson City, NV 89706 (775) 688-1025 (FAX) [email protected] dhhs.nv.gov/ODS_Programs.htm

NORTH DAKOTA INTERAGENCY PROGRAM FOR ASSISTIVE TECHNOLOGY (IPAT) John Vastag 3240 15th St S, Suite B Fargo, ND 58104 (701) 365-4728 (800) 895-4728 (701) 365-6242 (FAX) [email protected] www.ndipat.org

Minnesota

New Hampshire

Northern Mariana Islands

MINNESOTA STAR PROGRAM Kim Moccia 358 Centennial Office Building 658 Cedar Street St. Paul, MN 55155 (651) 201-2640 (651) 282-6671 (FAX) [email protected] www.mn.gov/star

ASSISTIVE TECHNOLOGY IN NEW HAMPSHIRE (ATINNH) Therese Willkomm University of New Hampshire Institute on Disability/UCEDD Durham, NH 03824 (603) 862-0555 (FAX) [email protected] www.atinnh.org

Mississippi

New Jersey

MISSISSIPPI PROJECT START (SUCCESS THROUGH ASSISTIVE REHABILITATIVE TECHNOLOGY) Patsy Galtelli Mississippi Department of Rehabilitative Services (MDRS) 1081 Highway 51 North Madison, MS 39110 (601) 853-5249 (601) 853-5218 (FAX) [email protected] www.msprojectstart.org

RICHARD WEST ASSISTIVE TECHNOLOGY ADVOCACY CENTER Curtis Edmonds Disability Rights New Jersey 210 South Broad St, 3rd Floor Trenton, NJ8608 (609) 292-9742 (609) 777-0187 (FAX) [email protected] www.drnj.org/atac/

COMMONWEALTH OF THE NORTHERN MARIANA ISLANDS ASSISTIVE TECHNOLOGY PROJECT Raymond Diaz CNMI Council on Developmental Disabilities Systems of Technology-Related Assistance for Individuals with Disabilities (STRAID) Saipan, MP 96950-2565 (670) 664-7030 (FAX) [email protected] www.cnmicdd.org/

Missouri

NEW MEXICO TECHNOLOGY ASSISTANCE PROGRAM Tracy Agiovlasitis NM Governor’s Commission on Disability (GCD) The Lamy Building Albuquerque, NM 87102 (505) 841-4467 [email protected] www.tap.gcd.state.nm.us/

Hawaii ASSISTIVE TECHNOLOGY RESOURCE CENTERS OF HAWAII (ATRC) Barbara Fischlowitz-Leong, M.Ed. 200 North Vineyard Blvd. Suite 430 Honolulu, HI 96817 (808) 532-7112 (808) 586-9755 (FAX) [email protected] www.humanservices.hawaii.gov/v ocationalrehab

Idaho IDAHO ASSISTIVE TECHNOLOGY PROJECT Janice Carson (Director) Center for Disabilities and Human Development University of Idaho Moscow, ID 83843 (800) 432-8324 (208) 885-6102 (FAX) [email protected] www.idahoat.org

Illinois ILLINOIS ASSISTIVE TECHNOLOGY PROGRAM Wilhelmina Gunther 1020 S. Spring Street Springfield, IL 62704 (217) 522-7985 (217) 522-9966 (FAX) [email protected] www.iltech.org

Indiana INDIANA ASSISTIVE TECHNOLOGY ACT PROJECT (INDATA) Brian Norton Easter Seals Crossroads 4740 Kingsway Drive Indianapolis, IN 46205 (317) 466-2013 (317) 466-2000 (FAX) [email protected] www.eastersealstech.com

Iowa IOWA PROGRAM FOR ASSISTIVE TECHNOLOGY Jane Gay Center for Disabilities and Development 100 Hawkins Drive Iowa City, IA 52242-1011 (319) 356-4463 (319) 384-5139 (FAX) [email protected] www.iowaat.org

Kentucky KENTUCKY ASSISTIVE TECHNOLOGY SERVICE (KATS) NETWORK James A. Brown Charles W. McDowell Center 8412 Westport Road Louisville, KY 40242 (502) 426-1998 (502) 426-2309 (FAX) [email protected] www.katsnet.org

Louisiana LOUISIANA ASSISTIVE TECHNOLOGY ACCESS NETWORK (LATAN) Julie Nesbit 3042 Old Forge Road, Suite D P. O. Box 14115 Baton Rouge, LA 70898-4115 (225) 925-9500 (225) 925-9560 (FAX) [email protected] www.latan.org

Maine MAINE CONSUMER INFORMATION AND TECHNOLOGY TRAINING EXCHANGE (CITE) Kathy Adams Maine CITE Coordinating Center 46 University Drive Augusta, ME 04330 (207) 621-3195 (207) 629-5429 [email protected] www.mainecite.org

Maryland

MISSOURI ASSISTIVE TECHNOLOGY C. Marty Exline 1501 NW Jefferson Blue Springs, MO 64015 (816) 655-6700 (800) 647-8557 (In State) (816) 655-6710 (FAX) [email protected] www.at.mo.gov

Montana

MARYLAND TECHNOLOGY ASSISTANCE PROGRAM (MDTAP) James D. McCarthy, Executive Director Maryland Department of Disabilities 2301 Argonne Drive, Room T17 Baltimore, MD 21218 (410) 554-9230 (410) 554-9237 (FAX) [email protected] www.mdtap.org

MONTANA ASSISTIVE TECHNOLOGY PROGRAM (MATP) Anna-Margaret Goldman University of Montana, Rural Institute 52 Corbin Hall Missoula, MT 59812 (406) 243-5769 (406) 243-2349 (FAX) [email protected] mso.umt. edu www.montech.ruralinstitute.umt. edu

Massachusetts

Nebraska

MASSACHUSETTS ASSISTIVE TECHNOLOGY IN CONSUMER'S HANDS (MASSMATCH) Ann Shor Massachusetts Rehabilitation Commission 600 Washington St. Boston, MA 02110 (617) 204-3851 (617) 204-3877 (FAX) [email protected] www.massmatch.org

NEBRASKA ASSISTIVE TECHNOLOGY PARTNERSHIP Tobias Orr 3901 North 27th Street, Suite 5 Lincoln, NE 68521 (402) 471-0734 (888) 806-6287 (In State) (402) 471-6052 (FAX) [email protected] www.atp.ne.gov

New Mexico

New York NYS TRAID PROGRAM Lisa Rosano-Kaczkowski NYS Justice Center 161 Delaware Avenue Delmar, NY 12054 (518) 549-0358 (518) 549-0462 (FAX) [email protected] www.justicecenter.ny.gov

North Carolina NORTH CAROLINA ASSISTIVE TECHNOLOGY PROGRAM Tammy Koger 805 Ruggles Drive Raleigh, NC 27699 (919) 855-3500 (919) 715-1776 www.ncatp.org

Ohio ASSISTIVE TECHNOLOGY OF OHIO William Darling 1314 Kinnear Road Area 1700 Columbus, OH 43212 (614) 292-2390 (614) 292-7721 (FAX) [email protected] www.atohio.org

Oklahoma OKLAHOMA ABLE TECH Linda Jaco Seretean Wellness Center Oklahoma State University Stillwater, OK 74078-2026 (4050 744-2487 (FAX) [email protected] okabletech.okstate.edu

Oregon OREGON’S STATEWIDE ASSISTIVE TECHNOLOGY PROGRAM Laurie Brooks Access Technologies, Inc. 2225 Lancaster Drive N.E. Salem, OR 97305 (503) 361-1201 (503) 370-4530 (FAX) [email protected] www.accesstechnologiesinc.org

Pennsylvania PENNSYLVANIA'S INITIATIVE ON ASSISTIVE TECHNOLOGY (PIAT) Amy S. Goldman Institute on Disabilities, Temple University Howard Gittis Student Center, Suite 411 Philadelphia, PA 19122 (215) 204-6336 (FAX) [email protected] disabilities.temple.edu

eparent.com | EP MAGAZINE • January 2017 43

State Assistive Technology Programs

Puerto Rico

Texas

Washington

PUERTO RICO ASSISTIVE TECHNOLOGY PROGRAM (PRATP) Maria I. Miranda University of Puerto Rico 1187 Calle Flamboyan, Jardin Botanico Sur San Juan, PR 00926-1117 (787) 474-9999 (FAX) [email protected] www.pratp.upr.edu

TEXAS TECHNOLOGY ACCESS PROGRAM Roger Levy Texas Center for Disability Studies The University of Texas at Austin Austin, TX 78758-4445 (512) 232-0761 [email protected] techaccess.edb.utexas.edu

WASHINGTON ASSISTIVE TECHNOLOGY ACT PROGRAM Alan J. Knue University of Washington,Center for Technology and Disability Studies CHDD South Bldg, Room 104 Seattle, WA 98195-7920 (206-543-4799 (FAX) [email protected] www.watap.org

Rhode Island RHODE ISLAND ASSISTIVE TECHNOLOGY ACCESS PARTNERSHIP (ATAP) Linda Deschenes Office of Rehabilitation Services 40 Fountain Street Providence, RI 02903 (401) 462-7874 (401) 222-3574 (FAX) [email protected] www.atap.ri.gov

South Carolina SOUTH CAROLINA ASSISTIVE TECHNOLOGY PROGRAM Carol Page USC School of Medicine University Center for Excellence Columbia, SC 29208 (803) 935-5263 (803) 935-5342 (FAX) [email protected] scatp.med.sc.edu/

South Dakota SOUTH DAKOTA ASSISTIVE TECHNOLOGY PROGRAM David Scherer DakotaLink 1161 Deadwood Ave. Suite 5 Rapid City, SD 57702 (605) 394-6742 (605) 394-6744 (FAX) [email protected] DakotaLInk.tie.net

Tennessee TENNESSEE TECHNOLOGY ACCESS PROGRAM (TTAP) Kim Lilley Citizens Plaza, 3rd Floor 400 Deaderick Street Nashville, TN 37243 (615) 313-5183 (615) 532-4685 (FAX) [email protected] www.tn.gov/humanservices/topic /ttap

US Virgin Islands

West Virginia

U. S. VIRGIN ISLANDS TECHNOLOGY-RELATED ASSISTANCE FOR INDIVIDUALS WITH DISABILITIES (VITRAID) Sharon Williams University of the Virgin Islands/UAP Senior Executive Director: Yegin Habtes, Ph.D St. Thomas, VI 00802-6025 (340) 693-1319 (FAX) [email protected] www.viucedd.org

WEST VIRGINIA ASSISTIVE TECHNOLOGY SYSTEMS (WVATS) Jamie Hayhurst West Virginia Center for Excellence in Disabilities 959 Hartman Run Road Morgantown, WV 26505 (304) 293-4692 (304) 293-7294 (FAX) [email protected] //wvats.cedwvu.org/

Utah

Wisconsin

UTAH ASSISTIVE TECHNOLOGY PROGRAM Sachin Pavithran Center for Persons With Disabilities 6835 Old Main Hill Logan, UT 84322-6855 (435) 797-3824 (435) 797-2355 (FAX) [email protected] www.uatpat.org

WISCONSIN ASSISTIVE TECHNOLOGY PROGRAM (WISTECH) Laura Plummer, MA, CRC, ATP Stout Vocational Rehabilitation Institute VR 201H UW Stout Menomonie, WI 54751 (715) 232-3300 (FAX) [email protected] www.wisconsinwistech.com/

Vermont

Wyoming

VERMONT ASSISTIVE TECHNOLOGY PROGRAM Amber Fulcher 103 South Main Street Weeks Building Waterbury, VT 05671-2305 (802) 241-0312 (802) 871-3048 (FAX) [email protected] www.atp.vt.gov

WYOMING ASSISTIVE TECHNOLOGY RESOURCES (WATR) Sandra Root-Elledge Wyoming Institute for Disabilities (WIND), University of Wyoming University Center for Excellence in Developmental Disabilities (UCEDD) Laramie, WY 82071 (307) 766-2763 (FAX) [email protected] wind.uwyo.edu/watr

Virginia VIRGINIA ASSISTIVE TECHNOLOGY SYSTEM (VATS) Barclay Shepard 2001 Maywill Street, Suite 202 Richmond, VA 23230 (800) 662-9990 (800) 552-5019 (804) 367-1260 (FAX) [email protected] www.vats.org

Jacob Sanchez Diagnosed with autism

Lack of eye contact is a sign of autism. Learn the others at autismspeaks.org/signs.

44 January 2017 • EP MAGAZINE | eparent.com

The Federation of Families for Children’s Mental Health

THROUGHOUT AMERICA, THERE IS AN AWAKENED AWARENESS of the struggles, challenges, and untapped possibilities for children and adolescents with mental health needs. Effective, family-driven advocacy ensures that children’s mental health remains a highly visible, national priority. The Federation of Families for Children’s Mental Health (www.ffcmh.org) serves, with humility and determination, to provide and sustain leadership for a broad and deep nationwide network of family-run organizations. The Federation harnesses the passion (and honors the cultural diversity) of the organization’s national membership and help focus it as a potent force for change on behalf of children with mental health needs and their families. The Federation is a passionate advocate at the national level for the rights of these children and families. The Federation is equally passionate in transferring insights and experiences to statewide family organizations, local chapters, and other family-run organizations so that skillful and effective advocacy can occur at state and local levels as well. The Federation extends a lifeline to this network so that partner organizations might draw strength from and, in turn, better respond to the needs of families requiring guidance, training, support, and personal advocacy. Through evolving relationships with these organizations, the Federation jointly discovers and shares new models, new technologies, new tools, and new visions that enrich the capacities of partners, strengthen the Federation network, and allow the Federation to serve with pride in this leadership role. HOW TO USE THIS DIRECTORY This directory includes the addresses and phone numbers of the chapters, state organizations, and partners. When available, email addresses are provided. Unless otherwise indicated, all telephone numbers are for voice only. State organizations are statewide, family-run organizations focused solely on the needs of children with mental health issues and their families. Chapters are local, family-run organizations with a similar focus. This directory is current as of December 2016.

NAPA (PARTNER ORG) PARENTS CAN Marlena Garcia 1909 Jefferson Street Napa, CA 94559 (707) 253-7444 (707) 253-2244 (FAX) [email protected] www.parentscan.org OAKLAND (PARTNER ORG) NATIVE AMERICAN HEALTH CENTER Katherine Lewis 3124 International Blvd., 4th Fl. Oakland, CA 94601 (510) 434-5421 [email protected] www.nativehealth.org

Canada TORONTO, ONTARIO (PARTNER ORG) PARENTS FOR CHILDREN’S MENTAL HEALTH Sarah Cannon and Sylvia Naumaouski 40 St. Clair Avenue, Ste 309 Toronto, ON M4T 1M9 Home (416) 821-2109 (416) 921-7600 (FAX) [email protected] www.pcmh.ca

Colorado

Alabama

Arizona

BIRMINGHAM (CHAPTER) Helping Other Parents Explore, H.O.P.E. Alternatives

PHOENIX (STATE ORG) MENTALLY ILL KIDS IN DISTRESS (MIKID) Sue Knabe 2642 E. Thomas Phoenix, AZ 85016 (602) 253-1240 (602) 253-1250 (FAX) (800) 35-MIKID [email protected] [email protected] www.mikid.org PHOENIX (CHAPTER) FAMILY INVOLVEMENT CENTER JANE KALLAL 1430 E. Indian School Road, Suite 110 Phoenix, AZ 85016 (602) 288-0155 (602) 288-0156 (FAX) [email protected] www.familyinvolvementcenter.org TEMPE (PARTNER ORG) CHILD & FAMILY SUPPORT SERVICES, INC. Shane Wolfersberger 4700 S. McClintock, Suite 140 Tempe, AZ 85282 (480) 635-9944 (480) 635-9987 (FAX) [email protected] www.cfssinc.com

Alabama BIRMINGHAM (CHAPTER) HELPING OTHER PARENTS EXPLORE, H.O.P.E. ALTERNATIVES Jacquelyn P. Scales 940 Montclair Road, Suite 200 Birmingham, AL 35213 (205) 443-2233 (205) 595-7499 (FAX) [email protected]

Alaska ANCHORAGE (CHAPTER) ALASKA YOUTH & FAMILY NETWORK Paul Cornils PO Box 23-3142 Anchorage, AK 99523-3142 (907) 770-4979 (907) 770-4997 (FAX) (888) 770-4979 [email protected] www.ayfn.org ANCHORAGE (PARTNER ORG) STONE SOUP GROUP Kelly Donnelly 307 E. Northern Lights Blvd., #100 Anchorage, AK 99503 (907) 561-3701 (907) 561-3702 (FAX) [email protected] www.stonesoupgroup.org

Arkansas LITTLE ROCK (STATE ORG) ARKANSAS FFCMH Pamela Marshall PO Box 56667 Little Rock, AR 72215 (501) 374-7218 (501) 374-2711 (FAX) [email protected]

MARIANNA (CHAPTER) LEE AND PHILLIPS COUNTY FAMILIES MOVING TOWARDS EXCELLENCE Porchar Franks 444 Atkins Street Marianna, AR 72360 (870) 295-4050 (870) 295-4054 (FAX) [email protected] [email protected]

California SAN DIEGO (STATE ORG) FAMILY & YOUTH ROUNDTABLE Donna Ewing Marto and Stewart Joseph 345 15th Street, Suite A San Diego, CA 92101 (619) 546-5852 x 862 (619) 546-6251 (FAX) [email protected] www.fyrt.org SACRAMENTO (CHAPTER) UNITED ADVOCATES FOR CHILDREN AND FAMILIES Oscar Wright, CEO 2035 Hurley Way, Suite 290 Sacramento, CA 95825 (916) 643-1530 (916) 643-1592 (FAX) (866) [email protected] www.uacc4families.org CAMPBELL (PARTNER ORG) EMQ CHILDREN & FAMILY SERVICES Jerry Doyle 251 Llewellyn Avenue Campbell, CA 95008 (408) 364-4006 (408) 364-4026 (FAX) [email protected] www.emq.org

DENVER (STATE) CO FFCMH Thomas H. Dillingham 2950 Tennyson Street Denver, CO 80212-3029 (720) 855-3493 [email protected] www.coloradofederation.org FT. COLLINS (PARTNER ORG) DREAM Melinda Suits 3800 Automation Way, Suite 200-A Fort Collins, CO 80525 (970) 226-4058 (970) 206-4836 (FAX) [email protected] www.idreamofrespite.org

District Of Columbia WASHINGTON (CHAPTER) TOTAL FAMILY CARE COALITION Gail Avent 3406 N Street, S.E. Washington, DC 20019 (202) 758-3281 (202) 248-3281 (FAX) [email protected] www.totalfamilycarecoalition.org BAZELON CENTER (PARTNER ORG) FOR MH LAW Robert Bernstein 1101 15th Street, NW #212 Washington, DC 20005 (202) 467-5730 (202) 223-0409 (FAX) [email protected] www.bazelon.org

Florida TALLAHASSEE (STATE ORG.) THE FAMILY CAFÉ, INC. Lori Fahey 519 N. Gadsden Street Tallahassee, FL 32301 (850) 224-4670 (888) 309-2233 (850) 224-4674 (FAX) [email protected] www.familycafe.net

ROYAL PALM BEACH (CHAPTER) FOF OF PALM BEACH COUNTY, INC. C. Veree Jenkins 1402 Royal Palm Beach Blvd., Suite 102 Unit 5 Royal Palm Beach, FL 33411 (561) 246-3334 (561) 246-3318 (FAX) [email protected] www.fofopbc.org JACKSONVILLE (CHAPTER) FFCMH OF NORTHEAST FLORIDA Desiree Durham-DeLeon 8280 Princeton Square Blvd. #10 Jacksonville, FL 32256 (904) 738-8423 (904) 379-0617 (904) 738-8427 (FAX) [email protected] www.mhajax.org MIAMI (CHAPTER) FEDERATION OF FAMILIES MIAMI - DADE Janet Pereyra 401 N.W. 2nd Avenue, N-812 Miami, FL 33128 (305) 377-5949 (305) 377-5144 (FAX) [email protected] PINELLAS (CHAPTER) FEDERATION OF FAMILIES OF PINELLAS COUNTY Janice Arthur PO Box 10226 St. Petersburg, FL 33733 (727) 520-2986 [email protected] SANFORD (CHAPTER) FAMILIES & COMMUNITIES TOGETHER, COMMUNITY BASED CARE OF CENTRAL FLORIDA, INC. Muriel Jones Moore 1465 E. Airport Blvd. Sanford, FL 32773 (407) 585-3095 [email protected] TAMPA (CHAPTER) FAMILIAS LATINAS DEMAND HUELLASCAPITULA DETAMPA BAY Luz Garay 11725 N.17th Street, C102 Tampa, FL 33612 (813) 974-6212 (813) 974-4763 (FAX) [email protected] TAMPA (CHAPTER) HILLSBOROUGH COUNTY FFCMH Larry English 4501 E Hillsborough Ave. Tampa, FL 33610 (813) 622-7930 [email protected] www.federationoffamilies.org PINELLAS PARK (PARTNER ORG) PERSONAL ENRICHMENT THROUGH MH SERVICES Maria Roberts 11254 58th Street, N. Pinellas Park, FL 33782 (727) [email protected] www.pemhs.org

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The Federation of Families for Children’s Mental Health

TALLAHASSEE (PARTNER ORG) PAIMO-ADVOCACY CENTER FOR PERSONS WITH DISABILITIES, INC. Dana Farmer 2671 Executive Center Circle West, Suite 100 Tallahassee, FL 32303 (850) 488-9071 ext. 204 (850) 488-8640 (FAX) [email protected]

Guam ANIGUA (CHAPTER) G.I.F.T.S., INC. - GUAM PARENT INFORMATION RESOURCE CENTER Mary-Therese Edgerle 138 East Marine Corp Drive J & G Commercial Center, Suite 101-C Hagatna, Guam 96932 (671) 477-4438 (671) 482-4438 (671) 477-4439 (FAX) [email protected]

Georgia ATLANTA (STATE ORG) GA PARENT SUPPORT NETWORK Sue Smith 1381 Metropolitan Pkwy Atlanta, GA 30310 (404) 753-3858 (404) 758-4500 (404) 758-6833 (FAX) (800) 832-8645 [email protected] www.gpsn.org ATLANTA (CHAPTER) FULTON COUNTY FFCMH Sue Smith 1395 Metropolitan Pkwy Atlanta, GA 30310 (404) 758-4500 (404) 758-6833 (FAX) (800) 832-8645 [email protected] WARNER ROBINS (CHAPTER) STEM, INC. - MIDDLE GEORGIA FFCMH Michele Bagby 101 Morningdale Drive Warner Robins, GA 31088 (912) 980-5356 [email protected] DECATUR (CHAPTER) DEKALB FAMILIES IN ACTION Tammie Harrison 852 Regal Path Lane Decatur, GA 30030 (404) 604-7229 [email protected] DECATUR (CHAPTER) FAMILY ADVOCATE COMMUNITY SUPPORT & TRAINING Jacqueline Crew 2861 Norgate Lane Decatur, GA 30034 (404) 604-7229 [email protected] WEST GEORGIA (CHAPTER) FAMILY ADVOCATES OF GA, INC. MELISA ALFORD PO Box 2437 Douglasville, GA 30133 (404) 437-5973 [email protected] yahoo.com www.faoga.com

DOUGLASVILLE (CHAPTER) PEACE, INC. (PEOPLE ENGAGED AND CARING IN EXCELLENCE) Jacquette Quashie 2605 Harrison Mill Drive Douglasville, GA 30135 (770) 780-4964 [email protected] FT. OGLETHORPE (CHAPTER) NW GEORGIA I Hope Sams 1875 Font Drive Ft. Oglethorpe, GA 30742 (706) 806-1260 [email protected] www.wingeorgia.org LITHONIA (CHAPTER) FAMILIES ADVOCATING FOR VOICES OF RESILIENCE Carmen Coates 1304 Birch Court Lithonia, GA 30058 (404) 587-8286 [email protected] www.favorfamilies.web.com LITHONIA (CHAPTER) MY FRESH AIR, LLC. Cheryl Bennett 1320 Birch Street Lithonia, GA 30058 (678) 349-4700 (770) 879-2709 (FAX) [email protected] MCDONOUGH CHAPTER) EMPOWERING KIDS Cathy & Michael Arnett 73 Price Quarters Road, Suite 237 McDonough, GA 30253 (404) 324-7167 (877) 820-4167 (FAX) [email protected] PALMETTO (CHAPTER) INTEGRATED CONCEPTS FOR FAMILIES, INC. Kisha Whitfield 612 Main Street, Suite 106 Palmetto, GA 30268 (770) 463-0202 [email protected] REDAN (CHAPTER) THE YOUNGER YEARS AND BEYOND Teresa Johnson PO Box 794 1344 Wellborn Road #794 Redan, GA 30074 (678) 499-0833 [email protected] HINESVILLE (CHAPTER) C.H.A.F.A.M. - CHATHAM FAMILIES WHO TEACH, EDUCATE, ADVOCATE & MENTOR FOR UNITED PROGRESSION Dione Breland 9 Idus Lane Hinesville, GA 31313 (912) 433-4497 [email protected] MADISON (CHAPTER) P.A.R.E.N.T.S. – PARENTS ADVOCATING RESEARCHING EDUCATING NETWORKING TEACHING AND SERVING Sylvia Milling 1412 Eatonton Road, Suite 400 Madison, GA 30650 (706) 612-5646 (706) 343-5853 (FAX) [email protected]

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TRENTON (CHAPTER) CHOSEN April Long 1091 Saddle Club Road Trenton, GA 30752 (423) 316-2941 [email protected] WINDER (CHAPTER) FAMILY FOUNDATIONS OF NORTHEAST GEORGIA Andrea Robertson 408 White Way Winder, GA 30680 (678) 471-2055 [email protected] com

Hawaii KAPOLEI (STATE ORG) HAWAII FAMILIES AS ALLIES Linda Machado 99-209 Moanalua Rd., #305 Aiea, HI 96701 (808) 487-8785 (808) 487-0514 (FAX) (866) 361-8825 [email protected]

Idaho BOISE (STATE ORG) IDAHO FFCMH Stephen Graci 704 N. 7th Street Boise, ID 83702 (208) 433-8845 (208) 433-8337 (FAX) (800) 905-3436 [email protected] www.idahofederation.org REXBURG (PARTNER ORG) MADISON SCHOOL DISTRICT SOC Janet Goodliffe 290 North 1st East Rexburg, ID 83440 (208) 359-3300 (208) 359-3345 (FAX) [email protected] http://d321.k12.id.us

Indiana INDIANAPOLIS (STATE ORG) INDIANA FFCMH Brenda Hamilton 2205 Costello Drive Anderson, IN 46011 (765) 622-0601 (765) 622-0643 (FAX) (866) 247-8457 [email protected] BATESVILLE (CHAPTER) UNITED FAMILIES OF SOUTHEASTERN INDIANA Kathy Riley 22 North Park Avenue Batesville, IN 47006 (812) 212-2420 [email protected] ELKHART (CHAPTER) THE PARENT SOURCE Bonnie Raine 2600 Oakland Avenue Elkhart, IN 46517 (574) 536-4559 (574) 522-5783 (FAX) (800) 282-0809 [email protected]

FRANKLIN (CHAPTER) FAMILIES FOR FAMILIES Erin Jacobs 86 Drake Road Franklin, IN 46131 (317) 736-7744 (317) 738-4694 (FAX) [email protected] www.adultandchild.org INDIANAPOLIS (CHAPTER) FAMILIES REACHING FOR RAINBOWS FFCMH Dennis McNair 4701 N. Keystone Ave., Suite 150 Indianapolis, IN 46205 (317) 205-8281 (317) 205-8343 (FAX) (866) 485-7300 [email protected] KALAMAZOO (CHAPTER) ADVOCACY SERVICES FOR KIDS Joel Murr 414 East Michigan Avenue Kalamazoo, MI 49007 (269) 343-5896 [email protected]

Iowa ANAMOSA (STATE ORG) IOWA FFCMH Lori Reynolds 106 South Booth Anamosa, IA 52205 (319) 462-2187 (319) 462-6789 (FAX) (888) 400-6302 [email protected] [email protected] www.iffcmh.org GLENWOOD (CHAPTER) EMBRACE IOWA FFCMH Julie Kalambokidis 502 Sharp Street Glenwood, IA 51534 (712) 527-2747 (712) 527-2091 (FAX) [email protected] DUBUQUE (CHAPTER) THE FAMILY CIRCLE FFCMH Gloria Klinefelter 799 Main Street, Ste. 370 Dubuque, IA 52001 (563) 583-5545 (563) 583-3266 (FAX) [email protected]

Kansas TOPEKA (STATE ORG) KEYS FOR NETWORKING, INC./KANSAS FFCMH Jane Adams 2348 SW Topeka Blvd. Topeka, KS 66611 (785) 233-8732 (785) 235-6659 (FAX) (800) [email protected] www.keys.org

Kentucky FRANKFORT (STATE ORG) KENTUCKY PARTNERSHIP FOR FAMILIES AND CHILDREN Carol Cecil 207 Holmes Street, 1st Fl. Frankfort, KY 40601 (502) 875-1320 (502) 875-1399 (FAX) (800) 369-0855 [email protected] www.kypartnership.org

LOUISVILLE (CHAPTER) KY SPIN/VRI Roberta Alston 10301 B Deering Road Louisville, KY 40272 (502) 937-6894 (502) 937-6464 (FAX) (800) 525-7746 [email protected] www.kyspin.com

Louisiana BATON ROUGE (STATE ORG) LOUISIANA FFCMH Vee Boyd 5627 Superior Drive, Suite A-2 Baton Rouge, LA 70816 (225) 293-3508 (225) 293-3510 (FAX) Parent line (800) 224-4010 [email protected] www.laffcmh.com

Maine AUGUSTA (CHAPTER) GEAR PARENT SUPPORT NETWORK Carol Tiernan PO Box 558 Augusta, ME 04332 (207) 696-8375 (207) 626-3453 (FAX) (800) 264-9224 [email protected] Web www.gearparentnetwork.com AUGUSTA (CHAPTER) GEAR PARENT SUPPORT NETWORK HANCOCK & WALDO COUNTIES Cindy Seekins PO Box 558 Augusta, ME 04432 (207) 223-9993 (207) 696-8375 (207) 626-3453 (FAX) (800) 264-9224 [email protected] www.gearparentnetwork.com AUGUSTA (CHAPTER) GEAR PARENT SUPPORT NETWORK KENNEBEC, SOMERSET, & FRANKLIN COUNTIES Paige Cummings PO Box 558 Augusta, ME 04332 (207) 623-4474 Out of state (207) 696-8375 (207) 626-3453 (FAX) (800) 264-9224 [email protected] org www.gearparentnetwork.com AUGUSTA (CHAPTER) GEAR PARENT SUPPORT NETWORK – KNOX, LINCOLN & SAGADAHOC COUNTIES Norman LeBlanc PO Box 558 Augusta, ME 04332 (207) 721-0161 (207) 626-3453 (FAX) (800) 264-9224 [email protected] www.gearparentnetwork.com

AUGUSTA (CHAPTER) GEAR PARENT SUPPORT NETWORK PENOBSCOT, PISCATAQUIS, WASHINGTON & AROOSTOOK COUNTIES Tonya Gray PO Box 558 Augusta, ME 04332 (207) 269-2234 (207) 696-8375 (207) 626-3453 (FAX) (800) 264-9224 [email protected] www.gearparentnetwork.com AUGUSTA (CHAPTER) GEAR PARENT SUPPORT NETWORK YORK, CUMBERLAND, OXFORD & ANDROSCOGGIN COUNTIES LAURIE CAVANAUGH PO Box 558 Augusta, ME 04332 (207) 518-9546 (207) 696-8375 (207) 626-3453 (FAX) (800) 264-9224 [email protected] org www.gearparentnetwork.com

Maryland COLUMBIA (STATE ORG) MD COALITION OF FAMILIES FOR CMH Jane Walker 10632 Little Patuxent Parkway 119 Columbia, MD 21044 (410) 730-8267 (410) 730-8331 (FAX) (888) 607-3637 [email protected] www.mdcoalition.org SILVER SPRING (CHAPTER) MONTGOMERY COUNTY FFCMH Celia Serkin Colesville Professional Center – Terrace B 13321 New Hampshire Avenue Silver Spring, MD 20904 (301) 681-8929 (301) 681-8928 (FAX) [email protected] BETHESDA (PARTNER ORG) NATIONAL ASSOCIATION OF SCHOOL PSYCHOLOGIST Lesley Carter 4340 East West Highway Suite 402 Bethesda, MD 20814 (301) 657-0270 (301) 657-0275 (FAX) [email protected] www.nasponline.org COCKEYSVILLE (PARTNER ORG) JUMPSTART CONCEPTS, INC. Stephanie Maskovyak 2 Pickburn Court Cockeysville, MD 21030 (410) 628-7527 (410) 628-2873 (FAX) [email protected]

Massachusetts

Missouri

BOSTON (STATE ORG) PARENT PROFESSIONAL ADVOCACY LEAGUE Lisa Lambert 45 Bromfield Street, 10th Fl. Boston, MA 02108 (617) 542-7860x203 (617) 542-7832 (FAX) (800) 537-0446 [email protected] www.ppal.net

ST. CHARLES (CHAPTER) F.A.C.T./PARTNERSHIP WITH FAMILIES Denise C. Gould (800) Friedens Road, #200 St. Charles, MO 63303-4198 (636) 949-2425 x 256 (636) 724-3664 (FAX) [email protected] ST. JOSEPH (CHAPTER ORG) F.O.C.U.S. EMPOWERMENT GROUP Joseph Turner 3715 Beck Road, Bldg. D. Suite 403 St. Joseph, MO 64506 (816) 236-5340 (816) 236-5344 (FAX) [email protected] JEFFERSON CITY (PARTNER ORG) NAMI MISSOURI Cynthia R. Keele 1001 Southwest Blvd., Suite E Jefferson City, MO 65109 (573) 634-7727 (573) 761-5636 (FAX) [email protected]

Michigan EAST LANSING (STATE ORG) ASSOCIATION FOR CHILDREN’S MENTAL HEALTH Jane Shank 6017 W St. Joe Highway, Suite 200 Lansing, MI 48917 (517) 372-4016 (517) 372-4032 (FAX) (888) 226-4543 [email protected] www.acmh-mi.org KALAMAZOO (CHAPTER) ADVOCACY SERVICES FOR KIDS Joel Murr 414 E. Michigan Avenue Kalamazoo, MI 49007 (269) 343-5896 (269) 344-4645 (FAX) [email protected] www.askforkids.org

Minnesota ST. PAUL (STATE ORG) MINNESOTA ASSOCIATION FOR CHILDREN’S MENTAL HEALTH Deborah Saxhaug 165 Western Avenue, North, Ste 2 St. Paul, MN 55102 (651) 644-7333 (651) 644-7391 (FAX) (800) 528-4511 [email protected] www.macmh.org ST. PAUL (PARTNER ORG) RAMSEY CO. CHILDREN’S MH COLLABORATIVE COMO PARK ELEMENTARY SCHOOL Sandy Bebertz 780 West Wheelock Parkway Room 1315 St. Paul, MN 55117 (651) 293-5951 [email protected]

Mississippi JACKSON (STATE ORG) MISSISSIPPI FAMILIES AS ALLIES Joy Hogge 840 East River Place Jackson, MS 39202 (601) 355-0915 (601) 355-0919 (FAX) (800) 833-9671 [email protected]

Montana BILLINGS (STATE ORG) FAMILY SUPPORT NETWORK Wendy Ochs 1002 10th Street, W., Suite1 Billings MT 59102 (406) 256-7783 (406) 259-5931 (406) 256-9879 (FAX) [email protected] BROWNING (PARTNER ORG) BLACKFEET PO’KÁ SOC Francis Onstad PO Box 870 Browning, MT 59417 (406) 338-2524 (406) 338-2544 (FAX) [email protected]

Nebraska KEARNEY (CHAPTER) FAMILIES CARE FFCMH Karla Bennett 4009 West 6th Ave., Suite 55 Kearney, NE 68845 (308) 237-1102 (308) 234-5712 (FAX) (877) 225-0500 www.region3.net LINCOLN (CHAPTER) FAMILIES INSPIRING FAMILIES Sharon Dalrymple 1645 N Street, Suite A Lincoln, NE 68503 (402) 441-4369 (402) 441-4335 (FAX) (888) 441-4369 [email protected] LINCOLN (CHAPTER) HEALTHY FAMILIES PROJECT Patricia (Trish) Blakely 2202 S. 11th Street #430 Lincoln, NE 68502 (402) 441-3805 (402) 477-2198 (FAX) (800) 743-0150 [email protected]

MINDEN (CHAPTER) NEBRASKA FFCMH Candy Kennedy 345 N. Minden Avenue Minden, NE 68959 (877) 239-8880 (866) 763-2649 (FAX) [email protected] www.nefamilies4kids.org NORTH PLATTE (CHAPTER) VOICES 4 FAMILIES Ashley Pankonin 417 N. Dewey Street North Platte, NE 69101 (308) 534-3304 (308) 534-3664 (FAX) (866) 275-3433 [email protected] www.v4f.us OMAHA (CHAPTER) NEBRASKA FAMILY SUPPORT NETWORK Dan Jackson 3568 Dodge Street, Suite 2 Omaha, NE 68131 (402) 345-0791 (402) 968-6050 (402) 345-0938 (FAX) (800) 245-6081 [email protected] SCOTTSBLUFF (CHAPTER) Janay Bahnsen-Price PO Box 1066 Scottsbluff, NE 69363 (308) 632-2051 (308) 632-7243 (FAX) (800) 732-2051 [email protected] NORFOLK (PARTNER ORG) PARENT TO PARENT NETWORK Robert Gereaux 201 Miller Avenue Norfolk, NE 68701 (402) 379-2268 (402) 371-7631 (FAX) [email protected] www.parent-parent.org

Nevada LAS VEGAS (CHAPTER) NEVADA PEP, INC. Karen Taycher 2101 S. Jones , Suite #120 Las Vegas, NV 89146 (702) 388-8899 (702) 388-2966 (FAX) (800) 216-5188 [email protected] or [email protected] www.nvpep.org

New Hampshire MANCHESTER (STATE ORG) GRANITE STATE FFCMH Kathleen Abate 497 Hooksett Road #258 Manchester, NH 03104 (603) 296-0692 (603) 785-7948 (603) 668-1575 [email protected] CONCORD (CHAPTER) NAMI NEW HAMPSHIRE Claudia Farber and Kenneth Norton 15 Green Street Concord, NH 03301 (603) 225-5359 (603) 228-8848 (FAX) (800) 242-6264 [email protected] [email protected] www.naminh.org

New Jersey MERCHANTVILLE (STATE ORG) NJ ALLIANCE OF FSO Madeline Lozowski 23 West Park Avenue Merchantville, NJ 08109 (856) 236-7217 (856) 662-2242 (FAX) [email protected] www.njalliance-fso.org MERCHANTVILLE (CHAPTER) CAMDEN CO. FAMILY SUPPORT ORGANIZATION Kathryn Birmingham 23 W. Park Ave, Suite 103-104 Merchantville, NJ 08109 (856) 662-2600 (856) 662-2242 (FAX) [email protected] EAST ORANGE (CHAPTER) FAMILY SUPPORT ORGANIZATION OF ESSEX CO. Hazeline C. Pilgrim 60 Evergreen Pl, Suite 412 East Orange, NJ 07018 (973) 395-1441 (973) 395-1595 (FAX) [email protected] www.fsoec.org FAIR LAWN (CHAPTER) FAMILY SUPPORT ORGANIZATION OF BERGEN COUNTY Rosemarie Lobretto 0-108 29th Street Fair Lawn, NJ 07410 (201) 796-6209 (201) 796-1151 (FAX) [email protected] www.fsobergen.org FORKED RIVER (CHAPTER) OCEAN CO. FAMILY SUPPORT ORGANIZATION, INC. Denise Coraggio 34 Manchester Ave., Suite 202 Forked River, NJ 08731 (609) 693-4121 (732) 330-8960 [email protected] www.ocfso.org LONG BRANCH (CHAPTER) FAMILY BASED SERVICES ASSOCIATION OF NJ, INC. Ann Goldman 6 Industrial Way, West, Suite D Eatontown, NJ 07724 (732) 542-4502 (732) 542-4563 (FAX) [email protected] MT. HOLLY (CHAPTER) FAMILY SUPPORT ORGANIZATION OF BURLINGTON COUNTY Deborah Kennedy 774 Eayrestown Road Lumberton, NJ 08048 (609) 265-8838 (609) 265-0116 (FAX) [email protected] NEWARK (CHAPTER) STATEWIDE PARENT ADVOCACY NETWORK Diana Autin and Debra Jennings 35 Halsey Street Newark, NJ 07102 (973) 642-8100 ext. 105 (973) 783-0203 (973) 642-8080 (FAX) [email protected]

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The Federation of Families for Children’s Mental Health

NORTHFIELD (CHAPTER) ATLANTIC CAPE FAMILY SUPPORT ORGANIZATION INC. Andrea Burleigh 1601 Tilton Road, Unit 1 Northfield, NJ 08225 (609) 485-0575 (609) 485-0467 (FAX) [email protected] www.famsupport.org ELIZABETH (CHAPTER) NEW JERSEY PARENTS CAUCUS, INC. Kathy Wright c/o Trinitas Medical Center 655 East Jersey Street Elizabeth, NJ 07206 (973) 898-8870 (973) 898-8867 (FAX) [email protected] www.newjerseyparentscaucus.org BRICK (PARTNER ORG) OCEAN PARTNERSHIP FOR CHILDREN, INC. Enrico DeGironimo 1610 Route West, Suite 303 Brick, NJ 08724 (732) 202-0666 (732) 202-0665 (FAX) [email protected] org EDISON (PARTNER ORG) FAMILY SUPPORT ORGANIZATION OF MIDDLESEX COUNTY Bobbie Locke 1 Ethel Road, Suite 108 Edison, NJ 08817 (732) 287-8701 [email protected] www.njfamily.org JERSEY CITY (PARTNER ORG) FSO OF HUDSON COUNTY NICOLE PRATT 705 Bergen Avenue Jersey City, NJ 07306 (201) 905-5140 (210) 905-5142 (FAX) [email protected]

New Mexico ALBUQUERQUE (CHAPTER) NEW MEXICO NETWORK Sergio Cianci & Ana Flores 1101 Cardenas, NE, Suite 202 Albuquerque, NM 87110 (505) 265-0430 (505) 255-6578 (FAX) (800) 273-7232 [email protected] www.pbdconline.org ALBUQUERQUE (PARTNER ORG) MOSAIC FAMILY & COMMUNITY RESOURCES Jennifer Perea 2270-D Wyoming Blvd, NEJ #323 Albuquerque, NM 87112 (505) 379-8389 (888) 481-1687 (FAX) [email protected] com www.mosaicfamilyresources.com

New York ALBANY (STATE ORG) FAMILIES TOGETHER IN NYS Paige Pierce, Exec Dir. 737 Madison Avenue Albany, NY 12208 (518) 432-0333 ext.12 (518) 434-6478 (FAX) (888) 326-8644 [email protected] www.ftnys.org ALBANY (CHAPTER) FAMILIES UNITED NETWORK C/O PARSONS CHILD AND FAMILY CENTER Joan Valery 60 Academy Road Albany, NY 12208 (518) 475-1970 (518) 426-2600 (518) 447-5234 (FAX) [email protected] BATH (CHAPTER) FINGER LAKES PARENT NETWORK, INC. Patti DiNardo 25 West Steuben Street Bath, NY 14810-1511 (585) 289-4874 (607) 776-2164 (607) 776-4327 (FAX) [email protected] ROCHESTER (CHAPTER) MONROE CO. FFCMH/BETTER DAYS AHEAD Melanie Funchess and Renee Jacobs 320 N. Goodman Street Rochester, NY 14607 (585) 325-3145 ext. 16 (585) 325-3188 (FAX) [email protected] [email protected] www.mharochester.org ALBANY (PARTNER ORG) FAMILIES TOGETHER IN ALBANY COUNTY 737 Madison Avenue Albany, NY 12208 (518) 432-0333 www.ftalb.org AMITYVILLE (PARTNER ORG) LONG ISLAND FAMILIES TOGETHER, INC. Susan Burger 193 Broadway, Suite A Amityville, NY 11701 (631) 264-5438 (631) 264-0762 (FAX) [email protected] BUFFALO (PARTNER ORG) FAMILIES CAN Vicky McCarthy 135 Delaware Avenue, Suite 210 Buffalo, NY 14202 (716) 884-2599 (716) 995-6101 (FAX) [email protected] NEW YORK (PARTNER ORG) FAMILIES ON THE MOVE OF NYC, INC. Euphemia Strauchn 330 Fifth Avenue, 9th Fl. New York, NY 10001 (718) 514-5806 (212) 330-6359 (FAX) www.fotmnyc.org

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ROCHESTER (PARTNER ORG) HILLSIDE FAMILY OF AGENCIES Sue Mustard One Mustard Street Rochester, NY 14609 (585) 654-1516 (585) 654-1555 (FAX) [email protected] www.hillside.com SYRACUSE (PARTNER ORG) ONONDAGA CASE MANAGEMENT SERVICES, INC. Nancy Kuss 220 Herald Place, 3rd Fl. Syracuse, NY 13202 (315) 472-7363 (315) 701-2666 (FAX) [email protected] WHITE PLAINS (PARTNER ORG) FAMILY TIES OF WESTCHESTER, INC. Carol Hardesty 150 Grand Street, 6th Fl. White Plains, NY 10601 (914) 995-5238 (914) 995-5872 (FAX) [email protected]

North Carolina JAMESTOWN (STATE ORG) NORTH CAROLINA FAMILIES UNITED Gail M. Cormier 3007 Scout Trail Jamestown, NC 27282 (336) 217-9712 (336) 638-8150 (919) 880-1868 [email protected] www.ncfamiliesunited.org CHARLOTTE (PARTNER ORG) MHA / PARENT VOICE PROGRAM Candace Wilson 3701 Latrobe Drive, Suite 140 Charlotte, NC 28211 (704) 365-3454 (704) 432-4547 (FAX) [email protected] www.mhacentralcarolinas.org

North Dakota BISMARCK (STATE ORG) NORTH DAKOTA FFCMH Carlotta McCleary PO Box 3061 Bismarck, ND 58502-3061 (701) 222-3310 [email protected] NORTH DAKOTA, BISMARCK (CHAPTER) NORTH DAKOTA FFCMH REGION VII Becky Sevant PO 3061 Bismarck, ND 58502 (701) 258-1628 [email protected] FARGO (CHAPTER) NORTH DAKOTA FFCMH REGION V Deborah Jendro 1104 2nd Avenue, South Fargo, ND 58103 (701) 235-9923 [email protected]

Ohio CINCINNATI (STATE ORG) OH FFCMH-SUMMIT BEHAVIORAL HEALTH Terre Garner, Director 3030 West Fork Road Cincinnati, OH 45211 (513) 761-6030 (513) 761-6031 (FAX) [email protected] www.ohiofederation.org BATAVIA (CHAPTER) FAMILIES CONNECTED OF CLERMONT COUNTY FFCMH Jean Houston 2040 State Route 50 Batavia, OH 45103 (513) 732-5034 (513) 732-0796 [email protected] or [email protected] ATHENS (PARTNER ORG) SOUTHERN CONSORTIUM FOR CHILDREN Steve Trout PO Box 956 Athens, OH 45701-0956 (740) 593-8293 (740) 592-4170 (FAX) [email protected]

Oklahoma WASHINGTON (STATE ORG) OK FEDERATION OF FAMILIES FOR YOUTH & CHILDREN’S MH Susan Boehrer 1912 Drexel Boulevard Oklahoma City, OK 73107 (405) 420-4193 (866) 837-9122 [email protected] www.okfederation.org

PHILADELPHIA (PARTNER ORG) MENTAL HEALTH ASSOCIATION OF SOUTH EASTERN PA Lisa Snitzer 1211 Chestnut Street, 11th Fl. Philadelphia, PA 19107 (215) 507-3836 [email protected] PITTSBURGH (PARTNER ORG) MENTAL HEALTH AMERICA – ALLEGHENY COUNTY Brenda E. Lee 1245 Fifth Avenue Pittsburgh, PA 15219 (412) 391-3820 (412) 391-3825 (FAX)

Puerto Rico BAYAMON, PUERTO RICO (CHAPTER) FEDERACION DE FAMILIAS DE PUERTO RICO Millie Court and Juan Velez Court Calle 13 T-21 Ext. Villa Rica Bayamon, PR 00959 (787) 294-6726 [email protected] http://nuestramente.org

Rhode Island JOHNSTON (CHAPTER) PARENT SUPPORT NETWORK Cathy Ciano, Exec. Dir. 1395 Atwood Ave, Suite 114 Johnston, RI 02919 (401) 467-6855 (401) 467-6903 (FAX) (800) 483-8844 [email protected] www.psnri.org

South Carolina

SALEM (STATE ORG) OREGON FAMILY SUPPORT NETWORK Sandy Bumpus 1300 Broadway Street, NE #403 Salem, OR 97301 (503) 908-1604 [email protected] www.ofsn.org

COLUMBIA (STATE ORG) FEDERATION OF FAMILIES OF SC, MHASC Diane Revels-Flashnick 810 Dutch Square Blvd. Suite 205 Columbia, SC 29210 (803) 772-5210 (803) 772-5212 (FAX) (866) 779-0402 [email protected] www.midnet.sc.edu/ffsc

Pennsylvania

Tennessee

PITTSBURGH (STATE ORG.) ALLEGHENY FAMILY NETWORK Ruth Fox 425 North Craig Street, Suite 300 Pittsburgh, PA 15213 (412) 246-2030 (888) 273-2361 [email protected] www.alleghenyfamilynetwork.org MCKEESPORT (PARTNER ORG) MCKEESPORT CCF AT FAMILY RESOURCES Christine McClellan 687 O’Neil Boulevard McKeesport, PA 15132 (412) 363-1702 (412) 673-9318 (FAX) [email protected] org

Nashville (State Org) TN Voices for Children, Inc. Charlotte Bryson 701 Bradford Avenue Nashville, TN 37204 (615) 269-7751 (615) 269-8914 (FAX) (800) 670-9882 [email protected] www.tnvoices.org

Oregon

Texas SAN ANTONIO (STATE ORG) TEXAS FFCMH Patti Derr 711 East Josephine Street San Antonio, TX 78208 (512) 944-9972 [email protected]

N. SALT LAKE CITY (STATE ORG) ALLIES WITH FAMILIES Lori Cerar 505 East 200 South #25 Salt Lake City, UT 84102 (801) 433-2595 (801) 521-0872 (FAX) (877)477-0764 [email protected] www.allieswithfamilies.org

DUFFIELD (CHAPTER) FEDERATION OF FAMILIES FOR PLANNING DISTRICT ONE, ADDINGTON HALL Kenneth M. Taylor 1431 Duff-Patt Highway Duffield, VA 24244 (276) 431-4370 (276) 431-2863 (FAX) (888) 443-1804 [email protected] www.frontierhealth.org

Vermont

Washington

WILLISTON (CHAPTER) VERMONT FFCMH Kathleen Holsopple PO Box 1577 Williston, VT 05495 (802) 876-7021 (802) 329-2135 (FAX) (800) 639-6071 [email protected]

TACOMA (STATE ORG) A COMMON VOICE FFCMH Sherry Lyons 10402 Kline Street Lakewood, WA 98445 (253) 537-2145 [email protected] www.acommonvoice.org TACOMA (CHAPTER) DADS MOVE Nelson Rascon 2119 South M Street Tacoma, WA 98405 (253) 230-3558 [email protected] www.dadsmove.org

Utah

Virginia RICHMOND (STATE ORG) VIRGINIA FEDERATION OF FAMILIES Vicki Hardy-Murrell 8719 Forest Hill Avenue Richmond, VA 23235 Ofc (804) 330-5030 (866) 264-8366 [email protected] www.vafof.org

SPOKANE (CHAPTER) PASSAGES Rebecca Bates 1002 N Superior Street Spokane, WA 99201 (509) 892-9241 (509) 892-9251 (FAX) [email protected] Web passages-spokane.org BELLEVUE (CHAPTER) WASHINGTON DADS Ralph Lucier 13297 SE 54TH Place Bellevue, WA 98006 (877) 847-3050 [email protected] www.wadads.org YAKIMA (CHAPTER) NAMI YAKIMA Melissa Sanchez 402 S. 4th Avenue Yakima, WA 98902 (509) 453-8229 [email protected] www.namiyakima.org

West Virginia MCMECHEN (STATE ORG) MOUNTAIN STATE PARENT CHILDREN & ADOLESCENT NETWORK Hope Coleman 1822 Winfield Road Winfield, WV 25218 (304) 233-5399 (800) 244-5385 [email protected] www.mspcan.org

Wisconsin MADISON (STATE ORG) WISCONSIN FAMILY TIES Hugh Davis 16 North Carroll Street #640 Madison, WI 53703 (608) 267-6888 (608) 267-6801 (FAX) (800) 422-7145 [email protected] www.wifamilyties.org

MILWAUKEE (CHAPTER) FAMILIES UNITED OF MILWAUKEE Margaret Jefferson 5326 West Vleit Street Milwaukee, WI 53208 (414) 344-7777 (414) 344-0298 (FAX) [email protected]

Wyoming CHEYENNE (STATE ORG) UPLIFT Peggy Nikkel 4007 Greenway St, Suite 201 Cheyenne, WY 82001 (307) 778-8686 (307) 778-8681 (FAX) (888) 875-4383 [email protected] www.upliftwy.org

YOU THINK SOMETHING MAY BE WRONG. THE ANSWER IS NOT STARING YOU IN THE FACE. Avoiding eye contact is one early sign of autism. Learn the others today at autismspeaks.org/signs. Early diagnosis can make a lifetime of difference.

© 2013 Autism Speaks Inc. “Autism Speaks” and “It’s time to listen” & design are trademarks owned by Autism Speaks Inc. All rights reserved. The child depicted has been diagnosed with an autism spectrum disorder.

eparent.com | EP MAGAZINE • January 2017 49

State Protection and Advocacy Agencies (P&As) and the National Association of Protection & Advocacy Systems (NAPAS) STATE PROTECTION AND ADVOCACY AGENCIES (P&As) offices are federally mandated to provide legally-based advocacy services to people with disabilities in each state and territory. P&As primarily advocate on behalf of special education students through funds from two federal programs: Protection and Advocacy for People with Developmental Disabilities (PADD) and Protection and Advocacy for Individual Rights (PAIR). These two programs join four other programs: Protection and Advocacy for Individuals with Mental Illness (PAIMI), Protection and Advocacy for Assistive Technology (PAAT), Protection and Advocacy for Beneficiaries of Social Security (PABSS), Protection and Advocacy for Traumatic Brain Injury (PATBI), Protection and Advocacy for Voting Access (PAVA) and the Client Assistance Program (CAP) to complete the entire P&A system. P&As all over the country work on a variety of cases with common themes for people with disabilities, one of which is ensuring that children in special education are receiving the services to which they are entitled under Individuals with Disabilities Education Act IDEA. The P&A system provide a unique and effective resource for disability rights advocacy and education. People with disabilities, their family members, and representatives are encouraged to make use of these services. Consistent with available resources and priorities established by the community, P&As will make every effort to provide appropriate assistance to remedy the situation. For additional information about the P&ANetwork, including the location of all P&As nationwide, visit the National Disability Rights Network (NDRN) website at www.ndrn.org or via email at [email protected] USING THIS DIRECTORY When available, Web sites and email addresses have been included. Unless otherwise indicated, all telephone numbers are for voice only. This listing is current as of December 2016.

Delaware

Guam

PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA William J. Dunne, Esq., Executive Director, Community Legal Aid Society, Inc. Community Services Building, Suite 801 100 W. 10th Street Wilmington, DE 19801 (302) 575-0660

PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Harold F. Parker, Executive Director, Guam Legal Services 113 Bradley Place Hagatna, GU 96910-4911 (671) 477-9811 (671) 477-1320 (FAX) [email protected] CAP Edmund Cruz, Executive Director, Guam Client Assistance Program, UIU Building, Suite 2F PO Box 23474 267 South Marine Corps Drive GMF, GU 96921 (671) 646-4227 (671) 649-4211 (FAX) [email protected]

(302) 575-0660 : (302) 575-0840 (FAX) [email protected] www.declasi.org DELAWARE CAP Don Moore, CAP Director, Client Assistance Program of United Cerebral Palsy Delaware 700A River Road Wilmington, DE 19809-2746 (302) 764-6216 (800) 640-9336 (302) 764-8713 (FAX) [email protected] www.ucpde.org

District Of Columbia

Alabama

American Samoa

California

PADD/PAIMI/PAIR/PABSS/PAAT /PATBI/PAVA Ellen Gillespie, Executive Director Alabama Disabilities Advocacy Program The University of Alabama Box 870395 Tuscaloosa, AL 35487-0395 (205) 348-4928 (800) 826-1675 (205) 348-9484 (205) 348-3909 (FAX) [email protected] www.adap.net CAP Rachel Hughes, CAP Director State of Alabama Client Assistance Program Bailey Building, Suite 465 400 Union Street Montgomery, AL 36104 (800) 228-3231 (334) 288-1104 (FAX) [email protected] ov

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Dr. Peter Tinitali, Executive Director, Client Assistance Program and Protection & Advocacy PO Box 3937 Pago Pago, AS 96799 (684) 633-2441 (684) 633-2441 (684) 633-7286 (FAX) [email protected] ARIZONA CAP/PADD/PAIMI/PAIR/PABSS/P AAT/PATBI/PAVA Peri Jude Radecic, Executive Director, Arizona Center for Disability Law 100 North Stone Street, Suite 305 Tucson, AZ 85701 (520) 327-9547 (800) 922-2260 (520) 884-0992 (FAX) [email protected] www.azdisabilitylaw.org

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Catherine Blakemore, Executive Director, Disability Rights California 1831 K Street Sacramento, CA 95811-4114 (916) 504-5800 (800) 776-5746 (800) 719-5798 (916) 504-5809 (FAX) [email protected] www.disabilityrightsca.org www.disabilityrightsca.org/espan ol

Alaska

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Tom Masseau, Executive Director, Disability Rights Center of Arkansas 1100 North University Ave., Suite 201 Little Rock, AR 72207 (501) 296-1775 (800) 482-1174 (501) 296-1775 (501) 296-1779 (FAX) [email protected] www.arkdisabilityrights.org

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Dave Fleurant, Executive Director, Disability Law Center of Alaska 3330 Arctic Blvd., Suite 103 Anchorage, AK 99503 (907) 565-1002 (800) 478-1234 (907) 565-1002 (907) 565-1000 (FAX) [email protected] www.dlcak.org

Arkansas

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Colorado CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Mary Anne Harvey, Executive Director, The Legal Center 455 Sherman Street, Suite 130 Denver, CO 80203 (303) 722-0300 (800) 288-1376 (303) 722-0300 (303) 722-0720 (FAX) [email protected] www.thelegalcenter.org

Connecticut CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Jim McGaughey, Executive Director, Office of Protection & Advocacy for Persons with Disabilities 60 B Weston Street Hartford, CT 06120-1551 (860) 297-4300 (800) 842-7303 (860) 566-2102 (860) 566-8714 (FAX) [email protected] www.state.ct.us/opapd/

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Jane Brown, Executive Director, University Legal Services 220 I Street, NE, Suite 130 Washington, DC 20002 (202) 547-0198 (202) 547-2083 (FAX) [email protected] www.uls-dc.org

Florida CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Robert Whitney, Executive Director, Disability Rights Florida 2728 Centerview Dr., Suite 102 Tallahassee, FL 32301 (850) 488-9071 (800) 342-0823 (800) 346-4127 (850) 488-8640 (FAX) www.disabilityrightsflorida.org

Georgia PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Ruby Moore, Executive Director, Georgia Advocacy Office, Inc. One Decatur Town Center 150 E. Ponce de Leon Avenue, Suite 430 Decatur, GA 30030 (404) 885-1234 (800) 537-2329 (404) 885-1234 (404) 378-0031 (FAX) [email protected] www.thegao.org CAP Charles L. Martin, CAP Director, Georgia Client Assistance Program 123 N. McDonough Street Decatur, GA 30030 (404) 373-3116 (404) 373-4110 [email protected] www.georgiacap.com

Hawaii CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Louis Erteschik, Executive Director, Hawaii Disability Rights Center 1132 Bishop Street, Suite 2102 Honolulu, HI 96813 (808) 949-2922 (808) 949-2922 (800) 882-1057 (808) 949-2928 (FAX) [email protected] www.hawaiidisabilityrights.org

Idaho CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Jim Baugh, Executive Director, DisAbility Rights Idaho 4477 Emerald St., Suite B-100 Boise, ID 83706-2066 (208) 336-5353 (866) 262-9462 (208) 336-5353 (208) 336-5396 (FAX) [email protected] www.disabilityrightsidaho.org

Illinois PADD/PAIMI/PAIR/PABSS/PAAT /PATBI/PAVA Zena Naiditch, Executive Director, Equip for Equality, Inc. 20 North Michigan Ave., Ste. 300 Chicago, IL 60602 (312) 341-0022 (800) 610-2779 (312) 341-0022 (312) 341-0295 (FAX) [email protected] www.equipforequality.org CAP Cathy Meadows, Manager, Illinois Client Assistance Program Richland Community College One College Park Decatur, IL 62521 (217) 875-9106 (866) 794-2683 (217) 875-9797 (FAX) [email protected] www.dhs.state.Il.us/ors/cap

Indiana CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Gary Richter, Acting Executive Director, Indiana Protection and Advocacy Services 4701 N. Keystone Ave., Ste. 222 Indianapolis, IN 46205(317) 722-5555 (800) 622-4845 (317) 722-5555 (317) 722-5564 (FAX) [email protected] www.IN.gov/ipas

Iowa PADD/PAIMI/PAIR/PABSS/PATB I/PAVA Jane M. Hudson, Executive Director, Disability Rights Iowa 400 East Court Ave., Suite 300 Des Moines, IA 50309 (515) 278-2502 (800) 779-2502 (515) 278-0571 (866) 483-3342 (515) 278-0539 (FAX) [email protected] www.disabilityrightsiowa.org PAAT John Allen, Supervisor Assistive Technology Legal Project - Legal Clinic at University of Iowa 386 Boyd Law Building Melrose & Byington Streets Iowa City, IA 52242-1113 (319) 335-9023 (319) 353-544 (FAX) [email protected] CAP Jackie Wipperman, CAP Director, Iowa Client Assistance Program Division of Persons w/ Disabilities Lucas State Office Bldg, 2nd Fl. Des Moines, IA 50319 (515) 281-3656 (800) 652-4298 (800) 652-4298 (515) 242-6119 (FAX) [email protected] www.state.ia.us/government/dhr/ pd/client_assist_program

Kansas CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Rocky Nichols, Executive Director, Disability Rights Center of Kansas 635 SW Harrison, Suite100 Topeka, KS 66603 (785) 273-9661 (877) 776-1541 (785) 273-9414 (FAX) [email protected] www.drckansas.org

Kentucky PADD/PAIMI/PAIR/PABSS/PAAT /PATBI/PAVA Marsha Hockensmith, Director, Kentucky Protection and Advocacy 100 Fair Oaks Lane, 3rd Fl. Frankfort, KY 40601 (502) 564-2967 (800) 372-2988 (502) 564-0848 (FAX) [email protected] www.kypa.net

CAP Gerry Gordon-Brown, Director, Client Assistance Program 275 E. Main Street, 2nd Fl Mail Stop 2EJ Frankfort, KY 40621 (502) 564-8035 (800) 633-6283 (502) 564-0530 (502) 564-1566 (FAX) [email protected] http://kycap.ky.gov

Louisiana CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Lois Simpson, Executive Director, Advocacy Center 8325 Oak Street New Orleans, LA 70118 (504) 522-2337 (800) 960-7705 (504) 522-2337 (504) 522-5507 (FAX) [email protected]rg www.advocacyla.org

Maine PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Kim Moody, Executive Director, Disability Rights Center 24 Stone Street, Suite 204 Augusta, ME 04338 (207) 626-2774 (800) 452-1975 (207) 621-1419 (FAX) [email protected] www.drcme.org CAP Steve Beam, Program Director, CARES, Inc. 134 Main Street, Suite 2C Winthrop, ME 04364 (207) 377-7055 (800) 773-7055 (207) 377-7057 (FAX) [email protected] www.caresinc.org

Maryland PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Virginia Knowlton Marcus, Executive Director, Maryland Disability Law Center 1500 Union Avenue, Suite 2000 Baltimore, MD 21211-1982 (410) 727-6352 (800) 233-7201 (410) 727-6387 (410) 727-6389 (FAX) [email protected] www.mdlclaw.org CAP Tom Laverty, CAP Program Client Assistance Program Maryland State Dept. of Ed. Div. of Rehab Serv. 2301 Argonne Drive Baltimore, MD 21218-1696 (410) 554-9359 (410) 554-9362 (FAX) [email protected] www.dors.state.md.us/DORS/Pro gramServices/cap/

Massachusetts

Missouri

New Hampshire

PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Chris Griffin, Executive Director, Disability Law Center, Inc. 11 Beacon Street, Suite 925 Boston, MA 02108 (617) 723-8455 (800) 872-9992 (800) 381-0577 (617) 723-9125 (FAX) [email protected] www.dlc-ma.org CAP Naomi Goldberg, CAP Director, MA Office on Disability Client Assistance Program One Ashburton Place, Room 1305 Boston, MA 02108 (617) 727-7440 (617) 727-0965 (FAX) [email protected] www.mass.gov/anf/employmentequal-access-disability/oversightagencies/mod

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Shawn de Loyola, Executive Director, Missouri P&A Services 925 South Country Club Drive Jefferson City, MO 65109 (573) 893-3333 (800) 392-8667 (573) 893-4231 (FAX) [email protected] www.moadvocacy.org

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Bernadette Franks-Ongoy, Executive Director, Disability Rights Montana 1022 Chestnut Street Helena, MT 59601 (406) 449-2344 (800) 245-4743 (406) 449-2418 (FAX) [email protected] www.disabilityrightsmt.org

PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Richard Cohen, Executive Director, Disabilities Rights Center 18 Low Avenue Concord, NH 03301-4971 (603) 228-0432 (800) 834-1721 (603) 228-0432 (603) 225-2077 (FAX) [email protected] www.drcnh.org CAP Bill Hagy, Ombudsman, Client Assistance Program Governor’s Commission on Disability 57 Regional Drive Concord, NH 03301-9686 (603) 271-2773 (603) 271-2837 (FAX) [email protected] www.state.nh.gov/disability/abou t/cap.htm

Michigan

Native American

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Elmer Cerano, Executive Director, Michigan Protection and Advocacy Services 4095 Legacy Parkway, Suite 500 Lansing, MI 48911-4263 (517) 487-1755 (800) 288-5923 (517) 487-1755 (517) 487-0827 (FAX) [email protected] www.mpas.org

PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI Therese Yanan, Executive Director, Native American Disability Law Center, Inc. 3535 East 30th Street, Suite 201 Farmington, NM 87402 (505) 566-5880 (800) 862-7271 (505) 566-5889 (FAX) [email protected] www.nativedisabilitylaw.org

Minnesota CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Brenda Jursik, Administrator, Minnesota Disability Law Center 430 First Avenue North, Suite 300 Minneapolis, MN 55401-1780 (612) 332-1441 (800) 292-4150 (612) 334-5755 (FAX) [email protected] www.mndlc.org

Mississippi PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Ann Maclaine, Executive Director, Disability Rights Mississippi 210 E. Capitol Street, Suite 600 Jackson, MS 39201 (601) 968-0600 (800) 772-4057 (601) 968-0600 (601) 968-0665 (FAX) [email protected] www.drms.ms CAP John McGinn, Executive Director, MS Society for Disability PO Box 4958 Jackson, MS 39216 (601) 362-2585 (601) 982-1951 (FAX) [email protected] Web Page:www.msdisabilities.com/ca p.htm

Montana

Nebraska PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Timothy Shaw, Executive Director, Disability Rights Nebraska 134 South 13th Street, Suite 600 Lincoln, NE 68508 (402) 474-3183 (800) 422-6691 (402) 474-3183 (402) 474-3274 (FAX) [email protected] www.disabilityrightsnebraska.org CAP Victoria Rasmussen, CAP Director, Client Assistance Program 301 Centennial Mall South Box 94987 Lincoln, NE 68509 (402) 471-3656 (800) 742-7594 (402) 471-0117 (FAX) [email protected] www.cap.state.ne.us

Nevada CAP/PADD/PAIMI/PAIR/PABSS/P AAT/PATBI/PAVA Jack Mayes, Executive Director, Nevada Disability Advocacy & Law Center, Inc. 6039 Eldora Avenue, Stuite C- 3 Las Vegas, NV 89146 (702) 257-8150 (888) 349-3843 (702) 257-8160 (702) 257-8170 (FAX) [email protected] www.ndalc.org

New Jersey CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Joe Young, Executive Director, Disability Rights New Jersey 210 S. Broad Street, 3rd Fl. Trenton, NJ 08608 (609) 292-9742 (800) 922-7233 (609) 777-0187 (FAX) [email protected] www.drnj.org

New Mexico CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA James Jackson, Executive Director, Disability Rights New Mexico 1720 Louisiana Blvd., NE, Suite 204 Albuquerque, NM 87110 (505) 256-3100 (505) 256-3100 (505) 256-3184 (FAX) [email protected] www.drnm.org

New York CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Tim Clune, Executive Director, Disability Rights New York 5 Clinton Square, 3rd Fl. Albany, NY 12207 (518) 432-7861 (518) 427-6561 (FAX) [email protected] www.disability-advocates.org

North Carolina PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Vicki Smith, Executive Director, Disability Rights North Carolina 2626 Glenwood Ave., Suite 550 Raleigh, NC 27608 (919) 856-2195 (877) 235-4210 (919) 733-9250 (919) 856-2244 (FAX) [email protected] www.disabilityrightsnc.org

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State Protection and Advocacy Agencies (P&As) and the National Association of Protection & Advocacy Systems (NAPAS) CAP John Marens, CAP Director, North Carolina Department of Health & Human Services Client Assistance Program 2806 Mail Service Center Raleigh, NC 27699-2806 (919) 855-3600 (919) 715-2456 (FAX) [email protected] http://cap.state.nc.us

North Dakota CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Teresa Larsen, Executive Director, North Dakota Protection & Advocacy Project 400 E. Broadway, Suite 409 Bismarck, ND 58501 (701) 328-2950 (800) 472-2670 (701) 328-3934 (FAX) [email protected] www.ndpanda.org

Northern Marianas Islands CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI James Rayphand, Executive Director, Northern Marianas Protection and Advocacy System, Inc. PO Box 503529 Saipan, MP 96950-3529 (670) 235-7274 (670) 235-7275 (FAX) www.nmpasi.com www.NMPASI.com

Ohio CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Michael Kirkman, Executive Director, Disability Rights Ohio 50 West Broad St., Suite 1400 Columbus, OH 43215-5923 (614) 466-7264 (800) 282-9181 (614) 466-7264 (614) 644-1888 (FAX) [email protected] www.state.oh.us/olrs/

Oklahoma PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Kayla Bower, Executive Director, Oklahoma Disability Law Center, Inc. 2915 Classen Blvd., Suite 300 Oklahoma City, OK 73106 (405) 525-7755 (800) 880-7755 (405) 525-7759 (FAX) [email protected] www.oklahomadisabilitylaw.org CAP William Ginn, CAP Director, Client Assistance Program Office of Disability Concerns 2401 NW 23rd, Suite 90 Oklahoma City, OK 73107 (405) 521-3756 (800) 522-8224 (405) 522-6695 (FAX) [email protected] www.ohc.ok.gov/cap.html

Oregon

South Carolina

Utah

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Robert Joondeph, Executive Director, Disability Rights Oregon 610 SW Broadway, Suite 200 Portland, OR 97205 (503) 243-2081 (800) 452-1694 (800) 556-5351 (503) 243-1738 (FAX) [email protected] org www.disabilityrightsoregon.org

PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Gloria Prevost, Executive Director, Protection & Advocacy for People with Disabilities, Inc. 3710 Landmark Drive, Suite 208 Columbia, SC 29204 (803) 782-0639 (866) 275-7273 (803) 782-0639 (866) 232-4525 (803) 790-1946 (FAX) [email protected] www.pandasc.org CAP Denise Riley, CAP Director Office of the Governor Division of Ombudsman & Citizen Services 1205 Pendleton Street Columbia, SC 29211 (803) 734-0285 (803) 734-0546 (FAX) [email protected] www.govoepp.state.sc.us/cap/

CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Adina Zahradnikova, Executive Director, Disability Law Center The Community Legal Center 205 North 400 West Salt Lake City, UT 84103 (801) 363-1347 (800) 662-9080 (801) 924-3185 (801) 363-1437 (FAX) http://www.disabilitylawcenter.or g/contact.php www.disabilitylawcenter.org

Pennsylvania PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Judy Banks, Interim Chief Executive Officer Disability Rights Network of Pennsylvania 1414 N. Cameron Street, Suite C Harrisburg, PA 17103 (717) 236-8110 (800) 692-7443 (877) 375-7139 (717) 236-0192 (FAX) [email protected] www.drnpa.org CAP Stephen Pennington, CAP Director, PA Client Assistance Program 1515 Market Street, Suite 1300 Philadelphia, PA 19102 (215) 557-7112 (215) 557-7602 (FAX) [email protected] www.equalemployment.org

Puerto Rico CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Ivan Diaz-Carrasquillo, Executive Director, Office of the Governor/Ombudsman for Persons with Disabilities Ombudsman for the Disabled PO Box 41309 San Juan, PR 00940-1309 (787) 721-4299 (800) 981-4125 (787) 725-4014 (787) 721-2455 (FAX) [email protected] http://www.oppi.gobierno.pr

Rhode Island CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Ray Bandusky, Executive Director, Rhode Island Disability Law Center, Inc. 275 Westminster St., Suite 401 Providence, RI 02903-3434 (401) 831-3150 (800) 733-5332 (401) 831-5335 (401) 274-5568 (FAX) [email protected] www.ridlc.org

52 January 2017 • EP MAGAZINE | eparent.com

South Dakota CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Robert Kean, Executive Director, South Dakota Advocacy Services 221 South Central Ave., Suite 38 Pierre, SD 57501 (605) 224-8294 (800) 658-4782 (605) 224-8294 (605) 224-5125 (FAX) [email protected] www.sdadvocacy.com

Tennessee CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Lisa Primm, Executive Director, Disability Law & Advocacy Center of Tennessee PO Box 121257 Nashville, TN 37212 (615) 298-1080 (800) 342-1660 (800) 852-2852 (615) 298-2046 (FAX) [email protected] www.DLACTN.org

Texas CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Mary Faithfull, Executive Director, Disability Rights Texas 2222 West Braker Lane Austin, TX 78758 (512) 454-4816 (800) 252-9108 (512) 454-4816 (512) 323-0902 (FAX) [email protected] www.DisabilityRightsTx.org

Vermont PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Edward Paquin, Jr., Executive Director, Disability Rights Vermont 141 Main Street, Suite 7 Montpelier, VT 05602 (802) 229-1355 (800) 834-7890 (802) 229-1359 (FAX) [email protected] www.disabilityrightsvt.org CAP Nancy Breiden, CAP Director Vermont Disability Law Project 57 North Main Street, Suite 2 Rutland, VT 05701 (802) 775-0021 (802) 775-0022 (FAX) [email protected] www.vtlegalaid.org

Virginia CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Colleen Miller, Executive Director, Virginia Office for Protection & Advocacy 1910 Byrd Avenue, Suite 5 Richmond, VA 23230 (804) 225-2042 (800) 552-3962 (804) 225-2042 (804) 662-7057 (FAX) [email protected] www.vopa.state.va.us

Virgin Islands CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Amelia Headley LaMont, Executive Director, Disability Rights Center of the Virgin Islands 63 Estate Cane Carlton Frederiksted, VI 00840 (340) 772-1200 (340) 772-4641 (340) 772-0609 (FAX) [email protected] http://drcvi.org

Washington PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Mark Stroh, Executive Director, Disability Rights Washington 315 5th Avenue South, Suite 850 Seattle, WA 98104 (206) 324-1521 (800) 562-2702 (800) 905-0209 (206) 957-0729 (FAX) [email protected] www.disabilityrightswa.org

CAP Jerry Johnsen, CAP Director, Client Assistance Program 2531 Rainier Avenue South Seattle, WA 98144 (206) 721-5999 (206) 721-4537 (FAX) [email protected] www.washingtoncap.org

West Virginia CAP/PADD/PAIMI/PAIR/PABSS/P AAT/PATBI/PAVA Clarice Hausch, Executive Director, West Virginia Advocates, Inc. Litton Bldg, 4th Floor 1207 Quarrier Street Charleston, WV 25301 (304) 346-0847 (800) 950-5250 (304) 346-0847 (304) 346-0867 (FAX) [email protected] www.wvadvocates.org

Wisconsin PADD/PAIMI/PAIR/PABSS/PAAT/ PATBI/PAVA Joan Karan, Interim Executive Director, Disability Rights Wisconsin 131 W. Wilson Street, Suite 700 Madison, WI 53703 (608) 267-0214 (800) 928-8778 (888) 758-6049 (608) 267-0368 (FAX) [email protected] www.disabilityrightswi.org CAP Linda Vegoe, CAP Director, Department of Agriculture, Trade & Consumer Protection 2811 Agriculture Drive PO Box 8911 Madison, WI 53708-8911 (608) 224-5070 (608) 224-5069 (FAX) [email protected] www.dwd.state.wi.us/dvr/cap.htm

Wyoming CAP/PADD/PAIMI/PAIR/PABSS/ PAAT/PATBI/PAVA Jeanne Thobro, Executive Director, Wyoming Protection & Advocacy System, Inc. 7344 Stockman Street Cheyenne, WY 82009 (307) 632-3496 (800) 821-3091 (800) 821-3091 (307) 638-0815 (FAX) [email protected] www.wypanda.com

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University Affiliated Programs

The Association of University Centers on Disabilities (AUCD) is a membership organization established 40 years ago to support and promote national networks of university-based interdisciplinary research, training and service centers and programs. These centers and programs serve and are located in every U.S. state and territory and are housed within a variety of university departments or medical centers. They serve as a bridge between the academic work of major universities and the day to day practical challenges facing individuals with disabilities and their families in communities across the country. The Centers and programs work within the higher education setting to bring the latest scientific findings and innovations to families and communities to improve the lives of children and adults with disabilities. The Association of University Centers on Disabilities (AUCD) Network members consist of: • 67 University Centers for Excellence in Developmental Disabilities (UCEDD), funded by the Administration on Developmental Disabilities (ADD) • 43 Leadership Education in Neurodevelopmental Disabilities (LEND) Programs funded by the Maternal and Child Health Bureau (MCHB) • 15 Eunice Kennedy Shriver Intellectual and Developmental Disability Research Centers (IDDRC), funded by the Eunice Kennedy Shriver National Institute for Child Health and Development (NICHD) UCEDDs: Since 1963, University Centers for Excellence in Developmental Disabilities (UCEDDs) have been working to accomplish a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity, and community inclusion are key components of this vision. Sixty-seven UCEDDs in every state and territory are located in a university setting. Centers are in a unique position to facilitate the flow of disability-related information between community and university. UCEDDs work with people with disabilities, members of their families, state and local government agencies, and community providers in projects that provide training, technical assistance, service, research, and information sharing, with a focus on building the capacity of communities to sustain all their citizens. Centers have played key roles in every major disability initiative over the past four decades. Many issues, such as early intervention, health care, community-based services, inclusive and meaningful education, transition from school to work, employment, housing, assistive technology, and transportation have been directly benefited by the services, research, and training provided by UCEDDs. LENDs: Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs provide long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. The purpose of the LEND training program is to improve the health of infants, children, and adolescents with disabilities. They accomplish this by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields and by insuring high levels of interdisciplinary clinical competence. LEND programs operate within a university system, usually as part of a UCEDD or children’s hospital, and collaborate with local university hospitals and/or health care centers. This set-up gives them the expert faculty, facilities, and other resources necessary to provide exceptional interdisciplinary training and services. The LENDs grew from the 1950s efforts of the Children’s Bureau (now the Maternal and Child Health Bureau) to identify children with disabilities as a Title V program priority. They are currently funded under the 2006 Combating Autism Act and are administered by the Health Resources and Service’s Administration’s (HRSA) Maternal and Child Health Bureau (MCHB). There are currently 43 LENDs in 37 states. IDDRCs: Established by Congress as “centers of excellence” for research in mental retardation and developmental disabilities, Intellectual and Developmental Disabilities Research Centers (IDDRCs) represent the nation’s first and foremost sustained effort to prevent and treat disabilities through biomedical and behavioral research. IDDRCs also contribute to the development and implementation of evidence-based practices by evaluating the effectiveness of biological, biochemical, and behavioral interventions; developing assistive technologies; and advancing prenatal diagnosis and newborn screening. IDDRCs receive funding through the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD). There are 15 of these research centers across the country. These listings were provided by: the Association of University Centers on Disabilities (AUCD): 1100 Wayne Avenue, Suite 1000; Silver Spring, MD; 20910; (301) 588-8252, www.aucd.org. The Association of University Centers on Disabilities (AUCD) promotes and supports a national network of interdisciplinary centers on disabilities. The members of AUCD represent every U.S. state and territory and include 67 University Centers for Excellence in Developmental Disabilities (UCEDDs), 43 Interdisciplinary Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs and 15 Intellectual and Developmental Disabilities Research Centers (IDDRC). Together, these organizations advance policy and practice through research, education, leadership, and services for and with individuals with developmental and other disabilities, their families, and communities, in support of independence, productivity, and satisfying quality of life. This directory is current as December 2016.

54 January 2017 • EP MAGAZINE | eparent.com

Alabama

Arkansas

FRED BIASINI, MD, UCEDD/LEND DIRECTOR Civitan International Research Center/Sparks Center, UCEDD/LEND The University of Alabama at Birmingham 933 19th Street South, CH19 Room 307 (Location) 1530 3rd Avenue South, CH19 Room 307 (Mailing) Birmingham, AL 35294-0021 (205) 934-5471 (800) 822-2472 (205) 975-2380 (FAX) [email protected] www.circ.uab.edu

DAVID DEERE, UCEDD DIRECTOR; ELDON SCHULZ, MD, LEND DIRECTOR Partners for Inclusive Communities University of Arkansas for Medical Sciences 2001 Pershing Circle, Suite 300 North Little Rock, AR 72114 (501) 682-9900 (501) 682-9902 (800) 342-2923 (501) 682-9901 (FAX) [email protected], [email protected] www.uams.edu/partners

Alaska KAREN WARD, EDD, UCEDD DIRECTOR Center for Human Development, UCEDD University of Alaska Anchorage 2702 Gambell Street Suite 103 Anchorage, AK 99503 (907) 272-8270 (907) 274-4802 (FAX) [email protected] www.alaskachd.org

Arizona RICHARD CARROLL, PHD, UCEDD DIRECTOR Arizona UCEDD Northern Arizona University Institute for Human Development PO Box 5630 Flagstaff, AZ 86011-5630 (928) 523-4791 (928) 523-1695 (928) 523-9127 (FAX) www.nau.edu/ihd/ TAMSON BASSFORD, MD SONORAN UCEDD University of Arizona Department of Family and Community Medicine 1521 E. Helen St. PO Box 245052 Tucson, AZ 85724 (520) 626-0442 (520) 626-0081 (FAX) [email protected] http://sonoranucedd.fcm.arizona .edu/ SYDNEY RICE, MD, MS AZLEND The University of Arizona Department of Pediatrics 1501 N Campbell Avenue PO Box 245073 Tucson, AZ 85724 (520) 626-7601 (520) 626-2808 (FAX) [email protected] http://azlend.peds.arizona.edu/

American Samoa SETH GALEAI, PHD Pacific Basin Program (American Samoa Community College) PO Box 2609 Pago Pago AS 96799 (684) 699-9155 http://www.amsamoa.edu/index. htm

California OLIVIA RAYNOR, PHD, UCEDD DIRECTOR Tarjan Center, UCEDD University of California, Los Angeles Semel Institute 11075 Santa Monica Blvd. Suite 200 Los Angeles, CA 90025 (310) 825-0170 (310) 794-1143 (FAX) [email protected] http://www.semel.ucla.edu/tarjan ROBIN HANSEN, MD, UCEDD DIRECTOR Center for Excellence in Developmental Disabilities at the UC Davis MIND Institute, UCEDD UC Davis Health System 2825 50th Street Sacramento, CA 95817 (916) 703-0439 (916) 703-0243 (FAX) [email protected] www.ucdmc.ucdavis.edu/ddcenter ROBERT A. JACOBS, MD, MPH, UCEDD DIRECTOR USC UCEDD at the Children’s Hospital Los Angeles Childrens Hospital Los Angeles University of Southern California 4650 Sunset Boulevard Mailstop #53 Los Angeles, CA 90027-6062 (323) 361-2300 (323) 361-8305 (FAX) [email protected] www.uscucedd.org DOUGLAS VANDERBILT, MD, LEND DIRECTOR CA-LEND Children’s Hospital Los Angeles, University of Southern California, UCEDD 4650 Sunset Boulevard Mailstop #53 Los Angeles, CA 90027-6062 (323) 361-2300 (323) 361-8305 (FAX) [email protected] www.uscucedd.org JEAN DE VELLIS PHD, IDDRC DIRECTOR UCLA Intellectual and Developmental Disabilities Research Center, IDDRC University of California, Los Angeles 635 Charles E Young Drive South Los Angeles, CA 90095-7332 (310) 825-9395 [email protected]

Colorado CORDELIA ROBINSON, PHD, RN, UCEDD/LEND DIRECTOR JFK Partners, UCEDD/LEND Program University of Colorado Denver School of Medicine 13121 E. 17th Avenue, C234 Aurora, CO 80045 303-724-5266 Fax: 303-7247664 [email protected] u www.jfkpartners.org

Connecticut MARY BETH BRUDER, PHD, UCEDD DIRECTOR Connecticut UCEDD University of Connecticut, A.J. Pappanikou Center for Excellence in Developmental Disabilities 263 Farmington Ave., MC 6222 Farmington, CT 06030-6222 (860) 679-1500 (860) 679-1502 (866) 623-1315 (860) 679-1571 (FAX) [email protected] www.uconnucedd.org

Delaware BETH MINEO, PHD, UCEDD DIRECTOR Center for Disabilities Studies College of Education and Human Development University of Delaware 461 Wyoming Road Newark, DE 19716 (302) 831-6974 (302) 831-4689 (FAX) (302) 831-4690 [email protected] www.udel.edu/cds

District of Columbia PHYLLIS MAGRAB, PHD, UCEDD DIRECTOR Georgetown UCEDD Georgetown University Center for Child and Human Development 3300 Whitehaven Street, NW, Suite 3300 PO Box 571485 Washington, DC 20057-1485 (202) 687-8807 (202) 687-5503 (202) 687-8899 (FAX) [email protected] www.gucchdgeorgetown.net/uce dd/ http://gucchd.georgetown.edu

Florida LISE FOX, PH.D, UCEDD DIRECTOR Florida Center for Inclusive Communities, UCEDD University of South Florida Department of Child and Family Studies College of Behavioral and Community Sciences 13301 Bruce B. Downs Blvd, MHC 2113A Tampa, FL 33612-3807 (813) 974-3126 (866) 818-4797 (813) 974-6115 (FAX) [email protected] www.flfcic.org

DANIEL ARMSTRONG, PHD, UCEDD/LEND DIRECTOR UCEDD,Program: Mailman Center for Child Development University of Miami Miller School of Medicine Department of Pediatrics Department of Pediatrics (D-820) PO Box 016820 Miami, FL 33101 (305) 243-6801 (305) 243-5978 (FAX) [email protected] http://mailmancenter.org JEFFREY BROSCO, MD, PHD, LEND DIRECTOR LEND Program: Mailman Center for Child Development University of Miami School of Medicine Department of Pediatrics 1601 NW 12th Ave, Room 3038A Miami, FL 33136 (305) 243-6801 (305) 243-5978 (FAX) [email protected] http://mailmancenter.org

Georgia DANIEL CRIMMINS, PHD, UCEDD/LEND DIRECTOR Center for Leadership in Disability Georgia State University Institute of Public Health PO Box 3995 Atlanta, GA 30302-3995 (404) 413-1281 (404) 413-1299 (FAX) [email protected] http://www.cld-gsu.org ZOLINDA STONEMAN, PHD Institute on Human Development and Disability River’s Crossing Building, The University of Georgia 850 College Station Road Athens GA 30602-4806 (706) 542-3457 http://www.ihdd.uga.edu

PACIFIC BASIN PROGRAM American Samoa Community College PO Box 2609 Pago Pago, AS 96799 (684) 699-9155 (684) 699-6259 (FAX) http://www.amsamoa.edu/index. htm

Idaho JULIE FODOR, PHD, UCEDD DIRECTOR Center on Disabilities and Human Development, UCEDD University of Idaho College of Education 121 W Sweet Avenue Moscow, ID 83843 (208) 885-6000 (800) 393-7290 (800) 432-8324 (208) 885-6145 (FAX) [email protected] www.idahocdhd.org

Illinois TAMAR HELLER, PHD, UCEDD DIRECTOR University of Illinois UCE, UCEDD Institute on Disability and Human Development (M/C 626) Department of Disability and Human Development The University of Illinois at Chicago 1640 West Roosevelt Road Chicago, IL 60608-6904 (312) 413-8833 (312) 413-0453 (312) 413-4098 (FAX) [email protected] www.idhd.org

Indiana

Kansas

Massachusetts

DAVID LINDEMAN, PHD, UCEDD DIRECTOR; R. MATTHEW REESE, PHD, KANSAS CITY-SITE UCEDD/LEND DIRECTOR Kansas University Center on Developmental Disabilities, UCEDD University of Kansas Schiefelbusch Institute for Life Span Studies 1052 Robert Dole Human Development Center Lawrence, KS 66045 (785) 864-4295 (785) 864-5323 (FAX) [email protected]

CHARLES HAMAD, PHD, UCEDD DIRECTOR; KATHLEEN BRADEN, MD, LEND DIRECTOR Eunice Kennedy Shriver Center, UCEDD/LEND University of Massachusetts Medical School 200 Trapelo Road Waltham, MA 02452-6319 (781) 642-0001 (800) 764-0200 (781) 642-0238 (FAX) [email protected] www.umassmed.edu/shriver WILLIAM KIERNAN, PHD, UCEDD DIRECTOR; DAVID HELM, PHD Institute for Community Inclusion UCEDD/LEND, University of Massachusetts Boston 100 Morrissey Blvd. Boston, MA 02125 (617) 287-4300 (617) 287-4350 (617) 287-4352 (FAX) [email protected] http://www.communityinclusion. org

Kentucky HAROLD KLEINERT, EDD, UCEDD DIRECTOR University of Kentucky UCE, UCEDD Human Development Institute Office of the Vice President for Research University of Kentucky 126 Mineral Industries Building Lexington, KY 40506-0051 (859) 257-1714 (859) 257-2903 (859) 323-1901 (FAX) [email protected] www.hdi.uky.edu

Louisiana PHILIP WILSON, PHD, UCEDD DIRECTOR Louisiana UCEDDERS LSUHSCHuman Development Center School of Allied Health Professions 1900 Gravier Street, 10th Fl. Room 1036 New Orleans, LA 70112-2262 (504) 556-7585 (504) 556-7574 (FAX) [email protected] www.hdc.lsuhsc.edu

HEIDI SAN NICOLAS, PHD, UCEDD DIRECTOR Guam Center for Excellence in Developmental Disabilities Education, Research, UCEDD University of Guam Office of Academic and Student Affairs UOG Station Mangilao, GU 96923 (671) 735-2481 (671) 734-6531 (671) 734-5709 (FAX) [email protected] rg http://www.guamcedders.org

David Mank, PhD, UCEDD Director Indiana Institute on Disability and Community, UCEDD Indiana University 2853 East Tenth Street Bloomington, IN 47408-2696 812-855-6508 812-855-9396 812-855-9630 (FAX) [email protected] www.iidc.indiana.edu ANGELA TOMLIN, PHD , LEND DIRECTOR Riley Child Development Center, LEND Indiana University School of Medicine, Department of Pediatrics 705 Riley Hospital Dr., Rm 5837 Indianapolis, IN 46202-5225 (317) 944-8167 (317) 944-9760 (FAX) www.child-dev.com

LUCILLE ZEPH, EDD, UCEDD DIRECTOR University Center for Excellence in Developmental Disabilities, UCEDD The University of Maine Center for Community Inclusion and Disability Studies 5717 Corbett Hall Orono, ME 04469-5717 (207) 581-1084 (800) 203-6957 (800) 203-6957 (207) 581-1231 (FAX) [email protected] www.ccids.umaine.edu

Hawaii

Iowa

Maryland

SETH GALEAI, PHD, UCEDD DIRECTOR; KELLY ROBERTS, PHD, UCEDD DIRECTOR; ROBERT STODDEN, PHD, UCEDD DIRECTOR; LOUISE IWASHI, MD, LEND DIRECTOR; TAFAIMAMAO TUA-TUPUOLA, UCEDD DIRECTOR Pacific Basin Program, UCEDD University of Hawaii, Center on Disability Studies 1776 University Ave. UA 4-6 Honolulu, HI 96822 (808) 956-2303 (808) 956-7878 (FAX) [email protected] www.hawaii.edu/cds

ROBERT BACON, MA, UCEDD DIRECTOR; LENORE HOLTE, PHD, LEND DIRECTOR Iowa’s University Center for Excellence on Disabilities, UCEDD Center for Disabilities and Development 100 Hawkins Drive Iowa City, IA 52242-1011 (319) 356-1335 (319) 356-8284 (FAX) [email protected] www.healthcare.uiowa.edu/cdd/ ucedd/ www.healthcare.uiowa.edu/cdd/ ucedd/ilend/

CHRISTOPHER SMITH, PHD, UCEDD DIRECTOR Kennedy Krieger Institute (Johns Hopkins University) 7000 Tudsbury Road Gwynn Oak, MD 21244 (443) 923-9555 http://mcdd.kennedykrieger.org/

Guam

Maine

Michigan BARBARA LEROY, PHD, UCEDD DIRECTOR Developmental Disabilities Institute, UCEDD Wayne State University 4809 Woodward Avenue 268 Leonard N. Simons Building Detroit, MI 48202 (313) 577-2654 (888)978-4334 (313) 577-3770 (FAX) [email protected] http://ddi.wayne.edu https://twitter.com/#!/DDIatWSU

Minnesota DAVID R JOHNSON, PHD, UCEDD DIRECTOR; MICHAEL REIFF, MD, LEND DIRECTOR Institute on Community Integration & MN LEND, UCEDD/LEND University of Minnesota College of Education and Human Development 102 Pattee Hall (UCEDD) 103 Pattee Hall (LEND) 150 Pillsbury Drive SE Minneapolis, MN 55455-0223 (612) 624-6300 (612) 624-9344 (FAX) [email protected] http://ici.umn.edu http://lend.umn.edu

Mississippi ROYAL WALKER, JR., JD, UCEDD DIRECTOR Institute for Disability Studies: Mississippi’s UCEDD The University of Southern Mississippi 118 College Drive #5163 Hattiesburg, MS 39406-0001 (601) 266-5163 (888) 671-0051 (601) 266-5114 (FAX) [email protected] www.usm.edu/ids

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University Affiliated Programs

Missouri CARL CALKINS, PHD, UCEDD DIRECTOR UMKC Institute for Human Development (UCE), UCEDD 215 W. Pershing 6th Fl. Kansas City, MO 64108 (816) 235-1770 (800) 452-1185 (816) 235-1762 (FAX) [email protected] www.ihd.umkc.edu

Montana MARTIN BLAIR, PHD, UCEDD DIRECTOR The University of Montana Rural Institute: Center for Excellence in Disability, Education, Research & Service 52 Corbin Hall Missoula, MT 59812-7056 (406) 243-5467 (800) 732-0323 (406) 243-5467 (406) 243-4730 (FAX) [email protected] http://ruralinstitute.umt.edu/

Nebraska J MICHAEL LEIBOWITZ, PHD, UCEDD DIRECTOR; CYNTHIA ELLIS, MD, LEND DIRECTOR Nebraska UCEDD Munroe-Meyer Institute for Genetics and Rehabilitation University of Nebraska Medical Center 985450 Nebraska Medical Center Omaha, NE 68198-5450 (402) 559-6430 (800) 656-3937 (402) 559-5737 (FAX) [email protected] www.unmc.edu/mmi

Nevada STEPHEN ROCK, PHD, UCEDD/LEND DIRECTOR Nevada Center for Excellence in Disabilities, UCEDD/LEND University of Nevada, Reno Mail Stop 285 Reno, NV 89557 (775) 784-4921 (800) 216-7988 (775) 327-5234 (775) 784-4997 (FAX) [email protected] http://nced.info/

New Hampshire CHARLES DRUM, MPA, JD, PHD, UCEDD DIRECTOR Institute on Disability/UCED University of New Hampshire Institute on Disability 10 West Edge Drive, Suite 101 Durham, NH 03824-3595 (603) 862-4320 (603) 862-0555 (FAX) [email protected] www.iod.unh.edu

JOHN B. MOESCHLER, MD, LEND DIRECTOR New Hampshire LEND Program Dartmouth-Hitchcock Medical Center Children’s Hospital at Dartmouth One Medical Center Drive Lebanon, NH 03756 (603) 650-5000 (603) 862-4320 (603) 650-8268 (FAX) [email protected] http://iod.unh.edu/projects/MCH -LEND.html www.chad.dartmouthhitchcock.o rg/

New Jersey DEBORAH SPITALNIK, PHD, UCEDD DIRECTOR The Boggs Center on Developmental Disabilities, UCEDD Department of Pediatrics Rutgers Robert Wood Johnson Medical School Department of Pediatrics 335 George Street, Suite 3500 PO Box 2688 New Brunswick, NJ 08903-2688 732-235-9300 Fax: 732-2359330 http://rwjms.rutgers.edu/boggsc enter

New Mexico CATHERINE MCCLAIN, MD, PT, FAAP, UCEDD/LEND DIRECTOR University of New Mexico Center for Development and Disability Pediatrics 2300 Menaul Boulevard NE Albuquerque, NM 87107 (505) 272-3000 (505) 272-0321 (505) 272-2014 (FAX) (UCEDD)[email protected] u http://cdd.unm.edu

New York ROBERT MARION, MD, UCEDD/LEND DIRECTOR UCEDD Program: Rose F. Kennedy University Center for Excellence in Developmental Disabilities Education, Research, and Service Albert Einstein College of Medicine 1410 Pelham Parkway South Room 237 Yeshiva University Bronx, NY 10461 (718) 430-8524 (718) 904-1162 (FAX) [email protected] www.aecom.yu.edu STEPHEN SULKES, MD, UCEDD/LEND DIRECTOR Strong Center for Developmental Disabilities (University of Rochester) Golisano Children’s Hospital at Strong 601 Elmwood Avenue, Box 671 Rochester NY 14642-8671 (585) 275-0355 http://www.urmc.rochester.edu/p ediatrics/divisions/developmenta l_disabilities/index.cfm

56 January 2017 • EP MAGAZINE | eparent.com

ANSLEY BACON, PHD, UCEDD DIRECTOR; KAREN EDWARDS, MD, MPH, LEND DIRECTOR Westchester Institute for Human Development University Center for Excellence in Developmental Disabilities Valhalla, NY 10595 (914) 493-8204 (914) 493-1204 (914) 493-1973 (FAX) [email protected] www.wihd.org

North Carolina JIM BODFISH, PHD, UCEDD DIRECTOR; STEPHEN HOOPER, PHD, LEND DIRECTOR Carolina Institute for Developmental Disabilities, UCEDD/LEND Program The University of North Carolina at Chapel Hill Campus Box 7255 Chapel Hill, NC 27599-7255 (919) 966-5171 (919) 966-2230 (FAX) [email protected] www.cidd.unc.edu/

North Dakota BRENT ASKVIG, PHD, UCEDD DIRECTOR North Dakota Center for Persons with Disabilities, Minot State University 500 University Avenue West Minot, ND 58707 (701) 858-3580 (800) 233-1737 (701) 858-3580 701-858-3483 (FAX) [email protected] www.ndcpd.org

Northern Mariana Islands DAVID ATTAO, MA, UCEDD DIRECTOR KELLY ROBERTS, PHD, UCEDD DIRECTOR Pacific Basin UAP/Northern Marianas, UCEDD Northern Marianas College School of Education PO Box 501250 As Terlaje Campus Saipan, CNMI 96950 (670) 234-5498 (670) 235-3253 (FAX) www.nmcnet.edu/

Ohio ILKA RIDDLE, PHD, UCEDD DIRECTOR UCEDD Program: University of Cincinnati University Center for Excellence in Developmental Disabilities, UCEDD Cincinnati Children’s Hospital Medical Center Division of Developmental and Behavioral Pediatrics MLC 4002, 3333 Burnet Avenue Cincinnati, OH 45229-3039 (513) 636-4688 (513) 636-4626 (513) 636-2837 (FAX) [email protected] www.cincinnatichildrens.org/uce dd

JENNIFER BASS, ACTING LEND DIRECTOR LEND Program at Cincinnati Children’s Hospital Medical Center Division of Developmental and Behavioral Pediatrics MLC 4002, 3333 Burnet Avenue Cincinnati, OH 45229-3039 (513) 803-3627 (513) 636-4626 (513) 636-2837 (FAX) [email protected] www.cincinnatichildrens.org/lend MARC J. TASSE, PHD, UCEDD DIRECTOR; PAULA RABIDOUX, PHD, CO-LEND DIRECTOR; KAREN RATLIFF-SCHAUB, MD, CO-LEND DIRECTOR Nisonger Center - UCEDD The Ohio State University OSU Wexner Medical Center/ Office of Health Sciences 357 McCampbell Hall 1581 Dodd Drive Columbus, OH 43210 (614) 688-8472 (614) 292-3727 (FAX) http://nisonger.osu.edu http://nisonger.osu.edu/LEND

Oklahoma VALERIE WILLIAMS, PHD, UCEDD DIRECTOR; MARK WOLRAICH, MD, LEND DIRECTOR Center for Interdisciplinary Learning and Leadership, UCEDD University of Oklahoma Health Sciences Center College of Medicine PO Box 26901, ROB 342 Oklahoma City, OK 73190-3042 (405) 271-4500 (800) 627-6827 (405) 271-1464 (405) 271-1459 (FAX) www.ouhsc.edu/thecenter/

Oregon JANE SQUIRES, PHD, UCEDD DIRECTOR University of Oregon UCEDD College of Education 5252 University of Oregon Eugene, OR 97403-5252 (541) 346-3591 (541) 346-2594 (FAX) [email protected] http://ucedd.uoregon.edu DON LOLLAR, EDD, UCEDD DIRECTOR; PETER BLASCO, MD, LEND DIRECTOR Oregon Institute on Disability & Development, UCEDD Oregon Health & Science University Child Development and Rehabilitation Center 707 SW Gaines Street Portland, OR 97239 (503) 494-8364 (503) 494-6868 (FAX) [email protected] www.oidd.org www.ohsu.edu/oidd

Pennsylvania CELIA FEINSTEIN, MA, COUCEDD DIRECTOR; AMY GOLDMAN, MS, CCC, COUCEDD DIRECTOR Institute on Disabilities/UCEDD Temple University Student Center 1755 N 13th Street Room 411 Philadelphia, PA 19122 (215) 204-1356 (215) 204-1356 (215) 204-6336 (FAX) [email protected] http://disabilities.temple.edu NATHAN BLUM, MD, LEND DIRECTOR Children’s Seashore House of The Children’s Hospital of Philadelphia, LEND 3550 Market Street 3rd Fl. Room 3033B Philadelphia, PA 19104-4388 (215) 590-7466 (215) 590-9339 (FAX) http://doiop.com/CHOP-LEND ROBERT NOLL, PHD, LEND DIRECTOR The UCLID Center at the University of Pittsburgh, LEND Children’s Hospital of Pittsburgh of UPMC One Children’s Hospital Drive 4401 Penn Avenue Pittsburgh, PA 15224 (412) 692-6538 (412) 692-7428 (FAX) [email protected] www.uclid.org

Puerto Rico ANNIE ALONSO AMADOR, PSYD, MSW, UCEDD DIRECTOR Puerto Rico University Center for Excellence on Developmental Disabilities/IDD, Graduate School of Public Health Medical Sciences Campus University of Puerto Rico PO Box 365067 San Juan, PR 00936-5067 (787) 754-4377 (866) 754-4300 (787) 764-5424 (FAX) http://iddpr.rcm.upr.edu/

Rhode Island A. ANTHONY ANTOSH, EDD, UCEDD DIRECTOR Paul V. Sherlock Center on Disabilities Rhode Island College 600 Mount Pleasant Avenue Providence, RI 02908 (401) 456-8072 (401) 456-8773 (401) 456-8150 (FAX) www.sherlockcenter.org

South Carolina DAVID ROTHOLZ, PHD, UCEDD DIRECTOR Center for Disability Resources University of South Carolina Department of Pediatrics School of Medicine Columbia, SC 29208 (803) 935-5231 (803) 935-5059 (FAX) http://uscm.med.sc.edu/cdrhom e/index.htm

MICHELLE MACIAS, MD, LEND DIRECTOR SC LEND Medical University of South Carolina 135 Rutledge Avenue Charleston, SC 29403 (843) 876-1511 (843) 792-3448 (FAX) http://www.musc.edu/sclend

South Dakota WENDY PARENT-JOHNSON, PH.D., CRC, CESP, UCEDD DIRECTOR Center for Disabilities, UCEDD Sanford School of Medicine of The University of South Dakota Department of Pediatrics 1400 West 22nd Street Sioux Falls, SD 57105-1570 605-357-1439 (800) 658-3080 Fax: 605-3571438 TTY: 800-658-3080 [email protected] www.usd.edu/cd

Tennessee FREDERICK PALMER, MD, UCEDD/LEND DIRECTOR Boling Center for Developmental Disabilities, UCEDD/LEND University of Tennessee Health Science Center 711 Jefferson Avenue Memphis, TN 38105 (901) 448-6511 (888) 572-2249 (901) 448-4677 (901) 448-7097 (FAX) www.uthsc.edu/bcdd/ ELISABETH DYKENS, PHD, UCEDD DIRECTOR; ELISE MCMILLAN, JD, UCEDD DIRECTOR Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, UCEDD Vanderbilt University PMB 40 230 Appleton Place Nashville, TN 37203 (615) 322-8240 (866) 936-8852 (615) 322-8236 (FAX) [email protected] http://kc.vanderbilt.edu/kennedy /ucedd/ [email protected] www.familypathfinder.org

Texas PENNY SEAY, PHD, UCEDD DIRECTOR Texas Center for Disability Studies, UCEDD The University of Texas at Austin The Commons Learning Center 10100 Burnet Road Austin, TX 78758-4445 (512) 232-0740 (800) 828-7839 (512) 232-0762 (512) 232-0761 (FAX) [email protected] http://tcds.edb.utexas.edu/ MICHAEL R. BENZ, PHD, UCEDD DIRECTOR Center on Disability and Development, UCEDD Texas A&M University Department of Educational Psychology Harrington 637, Mail Stop 4225 College Station, TX 77843-4225 (979) 845-4612 (979) 862-1256 (FAX) [email protected] http://cdd.tamu.edu PAULINE A. FILIPEK, MD, LEND DIRECTOR LoneStar LEND University of Texas Health Science Center at Houston Children’s Learning Institute 7000 Fannin Street, Suite 2476A Houston, TX 77030-5400 (713) 500-3637 (713) 500-3705 http://www.LoneStarLEND.org Ke[email protected]

Utah BRYCE FIFIELD, PHD, UCEDD DIRECTOR Center for Persons with Disabilities, UCEDD Utah State University University Center for Excellence in Disabilities 6800 Old Main Hill Logan, UT 84322-6800 (435) 797-1981 866-284-2821 (435) 797-1981 (435) 797-3944 (FAX) www.cpdusu.org

JUDITH HOLT, PHD, CO-LEND DIRECTOR; SARAH WINTER, MD, CO-LEND DIRECTOR Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) University of Utah Department of Pediatrics 50 N. Medical Drive Salt Lake City, UT 84132 (801) 585-1017 (801) 581-3399 (FAX) http://www.urlend.org

Vermont SUSAN RYAN, PHD, UCEDD DIRECTOR Center on Disability and Community Inclusion, UCEDD The UCEDD of Vermont/ University of Vermont College of Education and Social Services Mann Hall, 3rd Fl. 208 Colchester Avenue Burlington, VT 05405-1757 (802) 656-4031 (802) 656-1357 (FAX) [email protected] www.uvm.edu/~cdci/ STEPHEN CONTOMPASIS, MD, LEND DIRECTOR VT Interdisciplinary Leadership Education for Health Professionals, LEND University of Vermont Pediatrics, College of Medicine RE4 477, 4318 Rehab, UHC 1 S. Prospect Street Burlington, VT 05401 (802) 656-0204 (802) 656-9523 (FAX) [email protected] www.uvm.edu/~vtilehp

Virgin Islands YEGIN HABTES, PHD, UCEDD DIRECTOR Virgin Islands University Center for Excellence in Developmental Disabilities, UCEDD University of the Virgin Islands Office of the Provost and Senior Vice President # 2 John Brewers Bay St.Thomas, VI 00803 (340) 693-1201 (340) 693-1325 (FAX) [email protected] www.uvi.edu/sites/uvi/Pages/VIU CEDD-Home.aspx?s=CO





Virginia

West Virginia

DONNA GILLES, EDD, UCEDD DIRECTOR Partnership for People with Disabilities, UCEDD Virginia University Center for Excellence Virginia Commonwealth University PO Box 843020 700 E. Franklin Street Richmond, VA 23284-3020 (804) 828-3876 (800) 828-1120 (804) 828-0042(FAX) www.vcu.edu/partnership PASQUALE ACCARDO, MD, LEND DIRECTOR Virginia Commonwealth University 1000 East Marshall Street, VMI Building, Room 320 PO Box 980405 Richmond, VA 23298-0405 (804) 828-0073 (804) 828-3876 (804) 828-0042 (804) 828-0098 (FAX) www.vcu.edu/partnership/valend

PAT MOSS, MSW, ACTING, UCEDD DIRECTOR MARGARET JAYNES, MD, LEND DIRECTOR Center for Excellence in Disabilities (CED), UCEDD/LEND West Virginia University 959 Hartman Run Road, Research Park Morgantown, WV 26505 (304) 293-4692 (888) 829-9426 (800) 518-1448 (304) 293-7294 (FAX) [email protected] www.cedwvu.org/

Washington MICHAEL GURALNICK, PHD, UCEDD DIRECTOR Center on Human Development and Disabilities, UCEDD University of Washington Center on Human Development and Disability PO Box 357920 Seattle, WA 98195-7920 (206) 543-2832 (206) 543-5771 (FAX) [email protected] www.depts.washington.edu/chdd BETH ELLEN DAVIS, MD, MPH, LEND DIRECTOR University of Washington LEND Program, Clinical Training Unit, Center on Human Development and Disability Unviersity of Washington PO Box 357920 Seattle, WA 98195-7920 (206) 685-1350 (206) 543-5771 (FAX) http://depts.washington.edu/lend

Wisconsin DANIEL BIER, MSW, MPA, CAE, ASSOCIATE UCEDD DIRECTOR; ANNE BRADFORD HARRIS, PHD, MPH, RD, LEND DIRECTOR Waisman Center, UCEDD/LEND University of Wisconsin-Madison 1500 Highland Avenue Madison, WI 53705-2280 (608) 263-1656 (608) 263-0529 (FAX) www.waisman.wisc.edu/ www.waisman.wisc.edu/mchlend/

Wyoming WILLIAM MACLEAN, PHD, UCEDD DIRECTOR Wyoming INstitute for Disabilities (WIND), UCEDD University of Wyoming Department 4298 1000 E. University Avenue Laramie, WY 82071 (307) 766-2761 (307) 766-2720 (307) 766-2763 (FAX) [email protected] http://wind.uwyo.edu/



eparent.com | EP MAGAZINE • January 2017 57

Parent Training & Information Centers (PTIs) and Community Parent Resource Centers (CPRCs)

Parent Centers: Resources for Families of Children with Disabilities: Families with a child who has a disability often need information about the disability of their child, about early intervention (for babies and toddlers), school services (for school-aged children), therapy, state and local policies, planning for life after high school and much more. Every state has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. Many States also have a Community Parent Resource Center (CPRC), which offers the same type of support, resources and training for specific regions and/or underserved populations within a state. To find the Parent Center(s) in your state, go to http://www.parentcenterhub.org/find-your-center/ The Center for Parent Information and Resources (CPIR) is charged with providing universal technical assistance to the 96 USDE-funded Parent Centers serving families with children with disabilities. Our resources are web-based and are specific to the identified needs of the Parent Centers. All of the materials on www.parentcenterhub.org are developed through federal funds and therefore in the public domain. Feel free to explore our resources. If you plan to use them, we only ask that you include a citation. The web address for attributing our material is www.parentcenterhub.org/nichcy-resources Current as of May 2016

ALABAMA PTI: ALABAMA PARENT EDUCATION CENTER (APEC) 10520 US Highway 231 Wetumpka, AL 36092 (866) 532-7660 (in AL) (334) 567-2252 [email protected] www.alabamaparentcenter.com

ARKANSAS CPRC NORTHWEST ARKANSAS COMMUNITY PARENT CENTER (serving Benton, Carroll, Madison, and Washington counties) 614 E. Emma, Suite 219 Springdale, AR, 72764 (800) 748-9768 (479) 927-4100 [email protected] www.nwacprc.org

Alaska

California

ALASKA PTI STONE SOUP GROUP 307 E. Northern Lights Blvd., Suite 100 Anchorage, AK 99503 (877) 786-7327 (in AK) (907) 561-3701 [email protected] www.stonesoupgroup.org ALASKA CPRC LINKS PARENT RESOURCE CENTER (serving the Mat-Su borough) 3161 E. Palmer-Wasilla Highway, Suite 2 Wasilla, AK 99654 (907) 373-3632 [email protected] [email protected] linksprc.org

CALIFORNIA PTIS There are seven Parent Training and Information Centers in CA. Find out which PTI serves your county: www.parentcenterhub.org/wpcontent/uploads/2015/12/PTICPRC_CA_110615.pdf REGIONS 1 AND 2 TEAM OF ADVOCATES FOR SPECIAL KIDS (TASK) (Region 1 – Los Angeles and Ventura counties ; Region 2 – Imperial, Orange, Riverside, and San Diego counties) 100 W. Cerritos Avenue Anaheim, CA 92805 (866) 828-8275 (714) 533-8275 [email protected] www.taskca.org REGION 3 EPU CHILDREN’S CENTER (Serving Fresno, Inyo, Kern, Kings, Madera, Mariposa, Merced, Mono, San Bernardino, San Luis Obispo, Santa Barbara, Stanislaus, and Tulare counties) 4440 N. 1st Street Fresno, CA 93726 (559) 229-2000 (888) 774-8981 [email protected] https://www.epuchildren.org REGION 4 DISABILITY RIGHTS EDUCATION AND DEFENSE FUND (DREDF) (Serving Alameda, Contra Costa, and San Joaquin counties) 3075 Adeline Street, Suite 210 Berkeley, CA 94703 (510) 644-2555 (800) 348-4232 [email protected] dredf.org

Alabama

Arizona ARIZONA PTI RAISING SPECIAL KIDS 5025 E. Washington St, Suite 204 Phoenix, AZ 85034-2005 (800) 237-3007 (in AZ only) (602) 242-4366 [email protected] www.raisingspecialkids.org

Arkansas ARKANSAS PTI THE CENTER FOR EXCEPTIONAL FAMILIES (serving the state of Arkansas) 1702 Stone Street, Suite A Jonesboro, AR 72401 (888)360-9654 (870) 336-3012 [email protected] [email protected] www.thecenterforexceptionalfamil ies.org

58 January 2017 • EP MAGAZINE | eparent.com

MATRIX PARENT NETWORK AND RESOURCE CENTER (Serving Marin, Napa, Solano, and Sonoma counties) 94 Galli Drive, Suite C Novato, CA 94949 (800) 578-2592 (415) 884-3535 [email protected] www.matrixparents.org PARENTS HELPING PARENTS SOBRATO CENTER FOR NONPROFITS (Serving Monterey, San Benito, Santa Clara, Santa Cruz, San Mateo counties) 1400 Parkmoor, Suite 100 San Jose, CA 95126 (408) 727-5775 (855) 727-5775 [email protected] www.php.com SUPPORT FOR FAMILIES OF CHILDREN WITH DISABILITIES (Serving families in San Francisco) 1663 Mission Street, Ste. 700 San Francisco, CA 94110 (415) 920-5040 [email protected] www.supportforfamilies.org REGION 5 WARMLINE FAMILY RESOURCE CENTER (Serving Alpine, Amador, Butte, Calaveras, Colusa, Del Norte, El Dorado, Glenn, Humboldt, Lake, Lassen, Mendocino, Modoc, Nevada, Placer, Plumas, Sacramento, Shasta, Sierra, Siskiyou, Sutter, Tehama, Trinity, Tuolumne, Yolo, and Yuba counties) 2791 24th Street Sacramento, CA 95818 (916) 455-9500 (844) 455-9517 [email protected] www.warmlinefrc.org CPRCS IN CALIFORNIA CHINESE PARENTS ASSOCIATION FOR THE DISABLED (Serving Southern CA) PO Box 2884 San Gabriel, CA 91778-2884 (626) 307-3837 www.cpad.org

FIESTA EDUCATIVA, INC. (Serving Latino and Chinese Families in Los Angeles and Orange counties) 2310 Pasadena Ave, Ste. 213 PO Box 31285 Los Angeles, CA 90031 (323) 221-6696 [email protected] www.fiestaeducativa.org PARENTSCAN (serving Napa County) 1909 Jefferson St. Napa, CA 94559 (707) 253-7444 [email protected] www.parentscan.org

Colorado COLORADO PTI PEAK PARENT CENTER 611 N. Weber, Suite 200 Colorado Springs, CO 80903 (719) 531-9400 (800) 284-0251 (719) 531-9403 (TTY) [email protected] www.peakparent.org COLORADO CPRC THRIVE CENTER (Serving families in the counties of Arapahoe, Adams, Broomfield, Boulder, Denver, Douglas, and Jefferson) 2600 S. Parker Rd., #3-332 Aurora, CO 80014 (303) 632-6840 (main line) (303) 923-3532 (Spanish Line) [email protected] www.thrivectr.org

Connecticut CONNECTICUT PTI CONNECTICUT PARENT ADVOCACY CENTER (CPAC) 338 Main Street Niantic, CT 06357 (800) 445-2722 (in CT) (860) 739-3089 [email protected] www.cpacinc.org CONNECTICUT CPRC AFCAMP, HARTFORD-NEW HAVEN CPRC 60 Weston St., Suite B Hartford, CT 06120 (860) 548-9959 [email protected] www.afcamp.org

Delaware DELAWARE PTI PARENT INFORMATION CENTER OF DELAWARE (PIC) 6 Larch Avenue, Suite 404 Larch Corporate Center Wilmington, DE 19804 (888) 547-4412 (DE only) (302) 999-7394 (New Castle Co.) (302) 856-9880 (Sussex County) [email protected] www.picofdel.org

District of Columbia DISTRICT OF COLUMBIA PTI ADVOCATES FOR JUSTICE AND EDUCATION, INC. 25 E Street, NW, 4th Floor Washington, DC 20001 (888) 327-8060 (202) 678-8060 [email protected] www.AJE-DC.org

Florida FLORIDA PTIS There are 3 PTIs serving Florida. FAMILY NETWORK ON DISABILITIES (FND) 2196 Main Street, Suite K Dunedin, FL 34698 (800) 825-5736 (in FL only) (727) 523-1130 [email protected] www.fndusa.org PARENT EDUCATION NETWORK PROJECT (PEN) (Serving the counties of Lee, Collier, Hendry, Palm Beach, Broward, Miami-Dade, Monroe, Martin, and Glades) 2196 Main Street, Suite K Dunedin, FL 34698 (800) 825-5736 (in FL only) (727) 523-1130 [email protected] fndusa.org/contactus/programs/pen/ PARENTS OF THE PANHANDLE INFORMATION NETWORK (POPIN) (serving Northwest Florida from Escambia county to Alachua county) 2196 Main St. Suite K Dunedin, FL 34698 (800) 825-5736 (in FL) (727) 523-1130 [email protected] fndusa.org/contactus/programs/popin/ Florida CPRC PARENT TO PARENT OF MIAMI, INC. (serving Miami, Dade, and Monroe counties) 7990 S.W. 117th Ave, Suite 201 Miami, FL 33183 (800) 527-9552 (305) 271-9797 [email protected] www.ptopmiami.org

Georgia GEORGIA PTI PARENT TO PARENT OF GEORGIA, INC. 3070 Presidential Parkway, Ste 130 Atlanta, GA 30340 (800) 229-2038 (770) 451-5484 [email protected] www.p2pga.org

Hawaii

Kansas

HAWAII PTI LEARNING DISABILITIES ASSOCIATION OF HAWAII (Serving Hawaii, American Samoa, the Federated States of Micronesia, Guam, the Republic of the Marshall Islands, the Commonwealth of the Northern Mariana Islands, and the Republic of Palau) 245 N. Kukui Street, Suite 205 Honolulu, HI 96817 (800) 533-9684 (in HI) (808) 536-9684 (V/TTY) [email protected] www.ldahawaii.org

KANSAS PTI FAMILIES TOGETHER, INC. 3033 W Second N, Suite 122 Wichita, KS 67203 (316) 945-7747 (888) 815-6364 (Wichita) (620) 276-6364 (888) 820-6364 (Garden City) (785) 233-4777 (800) 264-6343 (Topeka) [email protected] www.familiestogetherinc.org

Idaho IDAHO PTI IDAHO PARENTS UNLIMITED, INC. (IPUL) 4619 Emerald Street, Suite E Boise, ID 83706 (208) 342-5884 (V/TTY) (800) 242-4785 (in ID only) [email protected] ipulidaho.org

Illinois ILLINOIS PTIS FAMILY RESOURCE CENTER ON DISABILITIES (serving Chicago Area 1) 20 E. Jackson Blvd, Room 300 Chicago, IL 60604 (800) 952-4199 (in IL) (312) 939-3513 [email protected] www.frcd.org FAMILY MATTERS (serving 94 counties in IL, except the counties of Cook, DuPage, Grundy, Kane, Kendall, Lake, McHenry, and Will) 1901 S. 4th Street, Suite 209 Effingham, IL 62401 (866) 436-7842 (217) 717-8016 [email protected] www.fmptic.org

Indiana INDIANA PTI IN*SOURCE 1703 S. Ironwood Drive South Bend, IN 46613 (800) 332-4433 (in IN) (574) 234-7101 (V/TTY) [email protected] www.insource.org

Iowa IOWA PTI ACCESS FOR SPECIAL KIDS RESOURCE CENTER (ASK) (Serving the entire state of Iowa) 5665 Greendale Rd, Suite D Johnston, IA 50131 (515) 243-1713 (800) 450-8667 [email protected] www.askresource.org

Kentucky KENTUCKY PTI KENTUCKY SPECIAL PARENT INVOLVEMENT NETWORK (KYSPIN) 10301-B Deering Road Louisville, KY 40272 (800) 525-7746 (502) 937-6894 [email protected] www.kyspin.com

Louisiana LOUISIANA PTI LOUISIANA PARENT TRAINING AND INFORMATION CENTER 201 Evans Road, Bldg 1, Ste 100 Harahan, LA 70123 (800) 766-7736 (504) 888-9111 [email protected] www.fhfjefferson.org/laptic LOUISIANA CPRC PYRAMID COMMUNITY PARENT RESOURCE CENTER (serving the greater New Orleans area) 3132 Napoleon Avenue New Orleans, LA 70125 (504) 218-8922 [email protected] www.pyramidparentcenter.org

Maine MAINE PTI MAINE PARENT FEDERATION PO Box 2067 Augusta, ME 04338-2067 (800) 870-7746 (in ME) (207) 623-2144 [email protected] www.startingpointsforme.org

Maryland MARYLAND PTI PARENTS’ PLACE OF MARYLAND, INC. 801 Cromwell Park Dr, Suite 103 Glen Burnie, MD 21061 (800) 394-5694 (410) 768-9100 [email protected] www.ppmd.org

Massachusetts MASSACHUSETTS PTI FEDERATION FOR CHILDREN WITH SPECIAL NEEDS The Schrafft Center 529 Main Street, Suite 1M3 Boston, MA 02129 (800) 331-0688 (in MA only) (617) 236-7210 (V/TTY) [email protected] www.fcsn.org

MASSACHUSETTS CPRC URBAN PRIDE (serving the city of Boston) One Westinghouse Plaza Building D, Suite 11 Hyde Park, MA 02136 (617) 206-4570 ext. 301 [email protected] www.urbanpride.org

Michigan MICHIGAN PTI MICHIGAN ALLIANCE FOR FAMILIES (Serving multiple locations across the state) 3111 Grand River Avenue Detroit, MI 48208 (800) 552-4821 (Statewide) (313) 557- 8780 (Detroit) [email protected] org www.michiganallianceforfamilies.org MICHIGAN CPRC SPEAKS EDUCATION 125 Arlington Plaza, Suite #10 Sault Saint Marie, MI 49783 (906) 635-8984 [email protected] www.speakseducation.org

Minnesota MINNESOTA PTI PACER CENTER, INC. 8161 Normandale Boulevard Bloomington, MN 55437-1044 (952) 838-0190 (888) 248-0822 (in MN) www.pacer.org MINNESOTA CPRC DISCAPACITADOS ABRIÉNDOSE CAMINOS (Serving Twin Cities Area) 107 7th Avenue South South Saint Paul, MN 55075 (651) 293-1748 [email protected] www.dacfamilycenter.org

Mississippi MISSISSIPPI PTI MS PARENT TRAINING AND INFORMATION CENTER 2 Old River Place, Suite M Jackson, MS 39202 (601) 969-0601 (800) 721-7255 www.mspti.org

Missouri MISSOURI PTI MISSOURI PARENTS ACT (MPACT) 7421 Mexico Rd, Suite 200 St. Peters, MO 63376 (800) 743-7634 (V/TTY) [email protected] www.missouriparentsact.org

Montana MONTANA PTI PARENTS, LET’S UNITE FOR KIDS (PLUK) 516 N. 32nd Street Billings, MT 59101-6003 (406) 255-0540 (800) 222-7585 (MT only) [email protected] www.pluk.org

Nebraska

New York

NEBRASKA PTI PTI NEBRASKA 2564 Leavenworth St Suite 202 Omaha, NE 68105 (800) 284-8520 (in NE) (402) 346-0525 [email protected] www.pti-nebraska.org

NEW YORK PTIS There are 5 PTIs serving New York State. STARBRIDGE (serving statewide except for the 5 boroughs of New York City and Long Island) 1650 South Avenue, Suite 200 Rochester, NY 14620 (585)546-1700 [email protected] www.starbridgeinc.org ADVOCATES FOR CHILDREN OF NEW YORK (serving the 5 boroughs of New York City) 151 W. 30th Street, 5th Floor New York, NY 10001 (212) 947-9779 (866) 427-6033 [email protected] www.advocatesforchildren.org INCLUDENYC (serving the 5 boroughs of New York City) 116 E. 16th Street, 5th Floor New York, NY 10003 (212) 677-4650 (212) 677-4660 [email protected] www.includenyc.org SINERGIA/METROPOLITAN PARENT CENTER (serving the 5 boroughs of New York City) 2082 Lexington Ave., 4th Floor New York, NY 10035 (212) 643-2840 (866) 867-9665 [email protected] www.sinergiany.org LONG ISLAND ADVOCACY CENTER (serving Nassau and Suffolk Counties) NASSAU COUNTY Herricks Comunity Ctr. 999 Herricks Road New Hyde Park, NY 11040 (516) 248-2222 [email protected] www.theliac.org SUFFOLK COUNTY 490 Wheeler Road Suite 165 C Hauppauge, NY 11788 (631)234-0467 [email protected] www.theliac.org CPRCS IN NEW YORK PARENT NETWORK OF WNY (serving Erie, Niagara, Orleans, Wyoming, Genesee, Chautauqua, Cattaraugus, and Allegany counties) 1000 Main St. Buffalo, NY 14202 (866) 277-4762 (716) 332-4170 [email protected] parentnetworkwny.org UNITED WE STAND OF NEW YORK (serving Brooklyn) 98 Moore Street Brooklyn, NY 11206 (718) 302-4313/4314 www.uwsofny.org

Nevada NEVADA PTI NEVADA PEP 7211 W. Charleston Blvd. Las Vegas, NV 89117 (800) 216-5188 (in NV) (702) 388-8899 (775) 448-9950 (Satellite Office Reno) [email protected] www.nvpep.org

New Hampshire NEW HAMPSHIRE PTI PARENT INFORMATION CENTER (PIC) PO Box 2405 Concord, NH 03302-2405 (603) 224-7005 (V/TTY) (800) 947-7005 (in NH) [email protected] www.picnh.org

New Jersey NEW JERSEY PTI STATEWIDE PARENT ADVOCACY NETWORK (SPAN) 35 Halsey Street, 4th Floor Newark, NJ 07102 (800) 654-7726 (in NJ) (973) 642-8100 [email protected] www.spannj.org NEW JERSEY CPRC ASSOCIATION FOR SPECIAL CHILDREN AND FAMILIES (serving Northern Passaic County) PO Box 494 Hewitt, NJ 07421 (973) 728-8744 [email protected] www.ascfamily.org

New Mexico NEW MEXICO PTI PARENTS REACHING OUT (PRO) 1920 B Columbia, S.E. Albuquerque, NM 87106 (800) 524-5176 (in NM) (505) 247-0192 [email protected] www.parentsreachingout.org NEW MEXICO CPRC EDUCATION FOR PARENTS OF INDIAN CHILDREN WITH SPECIAL NEEDS (EPICS) PROJECT (serving the 22 tribes in New Mexico) 1600 San Pedro Dr. NE Albuquerque, NM 87110 (888) 499-2070 (505) 767-6630 [email protected] www.epicsproject.org

eparent.com | EP MAGAZINE • January 2017 59

Parent Training & Information Centers (PTIs)

North Carolina NORTH CAROLINA PTI ECAC, INC. (EXCEPTIONAL CHILDREN’S ASSISTANCE CENTER) (Serving all North Carolina) 907 Barra Row, Suites 102/103 Davidson, NC 28036 (704) 892-1321 (V/TTY) (800) 962-6817 (Parent Info Line) [email protected] www.ecac-parentcenter.org NORTH CAROLINA CPRCS HOPE PARENT RESOURCE CENTER (serving Catawba, Caldwell, Alexander, Burke, and McDowell counties) PO Box 11395 Hickory, NC 28603 (828) 256-5202 (English) (704) 803-7082 (Spanish) (828) 403-1286 (Hmong) [email protected] www.fsnhope.org F.I.R.S.T. (serving Buncombe, Henderson, and Madison counties) PO Box 802 Asheville, NC 28802 (828) 277-1315 (877) 633-3178 (in NC) [email protected] www.firstparentcenter.org

North Dakota North Dakota PTI Pathfinder Parent Center 7 3rd Street SE, Suite 101 Minot, ND 58701 (800) 245-5840 (in ND) (701) 837-7500 [email protected] www.pathfinder-nd.org

Ohio OHIO PTI OHIO COALITION FOR THE EDUCATION OF CHILDREN WITH DISABILITIES (Serving the entire state) 165 W. Center Street, Suite 302 3rd Floor, Chase Bank Building Marion, OH 43302-3741 (844) 382-5452 For Parents ext 20, Martha Lause [email protected] www.ocecd.org

Oklahoma OKLAHOMA PTI OKLAHOMA PARENTS CENTER 223 North Broadway PO Box 512 Holdenville, OK 74848 (877) 553-4332 (405) 379-6015 (V/TTY) [email protected] www.oklahomaparentscenter.org

Oregon

OREGON CPRC ORFIRST (Serving underserved families in Portland, OR) 2600 SE 71st Ave Portland, OR 97206 (503) 232-0302 [email protected] www.orfirst.org

Palau PALAU CPRC PALAU PARENTS EMPOWERED PO Box 96 Koror, PW 96940 (680) 488-1432 [email protected]

Pennsylvania PENNSYLVANIA PTI PARENT AND EDUCATION ADVOCACY LEADERSHIP (PEAL) CENTER 1119 Penn Avenue, Suite 400 Pittsburgh, PA 15222-4205 (866) 950-1040 (412) 281-4404 [email protected] www.pealcenter.org PENNSYLVANIA CPRC HISPANOS UNIDOS PARA NIÑOS EXCEPCIONALES (PHILADELPHIA HUNE, INC.) (serving American Street Empowerment Zone and providing intense training sessions to parents of children with disabilities in Philadelphia) 2215 N. American St. Philadelphia, PA 19133 (215) 425-6203 [email protected] www.huneinc.org PENNSYLVANIA CPRC MISSION EMPOWER (serving Erie County) 1611 Peach Street , Ste 120 Erie, PA 16501 (814) 825-0788 (844)370-1529 [email protected] www.missionempower.org

Puerto Rico PUERTO RICO PTI APNI, INC. PO Box 21280 San Juan, PR 00928-1280 (787) 763-4665 (787) 250-4552 [email protected] www.apnipr.org PUERTO RICO CPRC EL CENTRO MARGARITA, INC. RR 03, Box 7260 Cidra, PR 00739-9917 (787) 739-6030 [email protected] www.centromargarita.com

OREGON PTI FAMILY AND COMMUNITY TOGETHER (FACT) 13455 SE 97th Avenue Clackamas, OR 97015 (503) 786-6082 (888) 988-3228 [email protected] www.factoregon.org

60 January 2017 • EP MAGAZINE | eparent.com

Rhode Island RHODE ISLAND PTI RHODE ISLAND PARENT INFO NETWORK (RIPIN) 1210 Pontiac Avenue Cranston, RI 02920 (800) 464-3399 (in RI) (401) 270-0101 [email protected] www.ripin.org

South Carolina SOUTH CAROLINA PTI FAMILY CONNECTION OF SC (Serving the entire state) 1800 St. Julian Place, Suite 104 Columbia, SC 29204 (803) 252-0914 (800) 578-8750 (888) 808-7462 (Spanish/Español) [email protected] [email protected] org (Español) www.familyconnectionsc.org SOUTH CAROLINA CPRC FAMILY RESOURCE CENTER FOR DISABILITIES AND SPECIAL NEEDS, INC. (serving Berkeley, Dorchester, and Charleston counties) 1575 Savannah Highway, Suite 6 Charleston, SC 29407 (843) 266-1318 [email protected] www.frcdsn.org

South Dakota SOUTH DAKOTA PTI South Dakota Parent Connection 3701 W. 49th Street, Suite 102 Sioux Falls, SD 57106 (800) 640-4553 (in SD) (605) 361-3171 (V/TTY) [email protected] www.sdparent.org

Tennessee TENNESSEE PTI SUPPORT AND TRAINING FOR EXCEPTIONAL PARENTS, INC. (STEP) 712 Professional Plaza Greeneville, TN 37745 (423) 639-0125 (423) 639-8802 TDD (800) 280-7837 (English toll-free in TN only) (800) 975-2919 (Spanish toll-free in TN only) [email protected] www.tnstep.org

Texas TEXAS PTIS There are 3 PTIs serving specific areas of Texas. PARTNERS RESOURCE NETWORK (serving Houston, San Antonio, Corpus Christi, Victoria, and Rio Grande Valley) Team Project 4501 Cartwright Rd, Suite 605 Missouri City, TX 77459 (281) 968-5944 [email protected] www.partnerstx.org/team

PARTNERS RESOURCE NETWORK (serving Dallas, Fort Worth, Austin, Wichita Falls, Southeast and East Texas) PATH Project 1090 Longfellow Drive, Suite B Beaumont, TX 77706-4819 (409) 898-4684 (800) 866-4726 (in TX) [email protected] www.partnerstx.org/path PARTNERS RESOURCE NETWORK (serving Amarillo, Lubbock, Abilene, San Angelo, & El Paso) PEN Project 1001 Main Street, Suite 701 Lubbock TX 79401 (806) 762-1434 (877) 762-1435 (in TX) [email protected] www.partnerstx.org/pen TEXAS CPRC CHILDREN’S DISABILITIES INFORMATION COALITION 1101 E. Schuster El Paso, TX 79902 (915) 217-2747 [email protected] www.cdicelpaso.org

Utah UTAH PTI UTAH PARENT CENTER 230 West 200 South, Suite 1101 Salt Lake City, UT 84101 (801) 272-1051 (V/TTY) (800) 468-1160 (in UT) [email protected] www.utahparentcenter.org

Vermont VERMONT PTI VERMONT FAMILY NETWORK 600 Blair Park Road, Suite 240 Williston, VT 05495 (800) 800-4005 (in VT) (802) 876-5315 (V/TTY) [email protected] www.vermontfamilynetwork.org

Virgin Islands VIRGIN ISLANDS PTI VIRGIN ISLANDS PARENT TRAINING AND INFORMATION CENTER Main Office 63 Cane Carlton Fredericksted, VI 00840 (340) 772-1200 (340) 772-1280 St. Thomas Office 9003 Havensight Mall,Suite 313 St Thomas, VI 00802 (340) 776-4303 drcvi.org/contact www.drcvi.org

Virginia VIRGINIA PTI PARENT EDUCATIONAL ADVOCACY TRAINING CENTER (PEATC) 100 N. Washington St, Suite 234 Falls Church, VA 22046 (703) 923-0010 (800) 869-6782 [email protected] www.peatc.org

VIRGINIA CPRC FORMED FAMILIES FORWARD (Serving foster, adoptive, and kinship families in Arlington, Fairfax, Loudoun, and Prince William counties, and the city of Alexandria) 4031 University Drive, Suite 100 Fairfax, VA 22030 (703) 539-2904 [email protected] www.formedfamiliesforward.org

Washington WASHINGTON PTI PAVE 6316 S. 12th Street Tacoma, WA 98465-1900 (253) 565-2266 (V/TTY) (800) 572-7368 (V/TTY) [email protected] www.wapave.org WASHINGTON CPRC OPEN DOORS FOR MULTICULTURAL FAMILIES (serving multicultural families South King County) 24437 Russell Rd., Suite 220 (Office Location) 4327 S. 253rd St. (Mailing Address) Kent, WA 98032 (253) 216-4479 [email protected] [email protected] (Family Referral) www.multiculturalfamilies.org

West Virginia WEST VIRGINIA PTI WEST VIRGINIA PARENT TRAINING AND INFORMATION (PTI) 99 Edmiston Way Buckhannon, WV 26201 (304) 624-1436 Voice & TTY (800) 281-1436 [email protected] www.wvpti.org

Wisconsin WISCONSIN PTI WISCONSIN FACETS 600 W. Virginia Street , Suite 501 Milwaukee, WI 53204 (877) 374-0511 (Milwaukee) (877) 374-4677 (Statewide) (414) 374-4645 [email protected] www.wifacets.org WISCONSIN CPRC ALIANZA LATINA APLICANDO SOLUCIONES (A.L.A.S.) (serving the state of Wisconsin) 1615 S. 22nd St., Ste 310 Milwaukee, WI 53204 (414) 643-0022 (866) 249-5055 [email protected] www.alianzalatinawi.org/ALAS.htm

Wyoming WYOMING PTI PARENT INFORMATION CENTER 500 W. Lott St., Suite A Buffalo, WY 82834 (800) 660-9742 (in WY) (307) 684-2277 [email protected] www.wpic.org

PHYSICAL ACTIVITY.

IT’S THE

WINNING EDGE IN LIFE. Studies show th at physical activ ity can enhance impo rtant skills like concentration an d problem solvin g, which can improve acad emic performance . Talk about a com petitive edge.

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Dominique Dawes, 3-time Olympic gymnast, co-chair of the President’s Council on Fitness, Sports & Nutrition

National Information and Advocacy Resources

THESE NATIONAL ORGANIZATIONS ARE information and advocacy resources for families and professionals. Many of these organizations provide a variety of services, others focus on more specific areas of concern. Numbers following each listing correspond to items listed in the Key to Services, which describes services provided by individual organizations. We have tried to list as much information as possible on each group, but it is best to contact the organization directly for a full description of services. When available, email addresses and websites have been included. Unless otherwise indicated, all telephone numbers are for voice only. This directory is current as of December 2016.

Accessible Playgrounds BOUNDLESS PLAYGROUNDS INC. Boundless Playgrounds Inc. Lisa Moore 401 Chestnut Street, Suite 410 4th Floor Chattanooga, TN 37402 (800) 727-1907 203-859-6621 (FAX) [email protected] www.cvsallkidscan.com/partners/ boundless-playgrounds 2,4 English

Adoption SPAULDING FOR CHILDREN 16250 Northland Drive, Suite 120 Southfield, MI 48075 (248) 443-0300 (248) 443-2131 (248) 443-7099 (FAX) [email protected] www.spaulding.org AASK ADOPT A SPECIAL KID Brooke Derrick 8201 Edgewater Dr., Suite 103 Oakland, CA 94621 (510) 553-1748,12 (888) 680-7349 (510) 553-1747 (FAX) [email protected] www.aask.org 1,2,3,4,6,7,9 English ADOPTIVE FAMILIES MAGAZINE Susan Caughman 108 West 39th Street, Suite 801 New York, NY 10018 (646) 366-0830 (646) 366-0842 [email protected] www.adoptivefamilies.com 1 English

KEY TO SERVICES 1 2 3 4 5 6 7 8 9

Periodical/newsletter Informational materials Networking/matching Referrals to local resources Local chapters National conferences National advocacy efforts Fund research Maintain research registry

JEWISH CHILDREN’S ADOPTION NETWORK Stephen Krausz PO Box 147016 Denver, CO 80214-7016 (303) 573-8113 (303) 893-1447 (FAX) [email protected] www.jcan.us 1,2,3,4,7 English, Hebrew, Yiddish NATIONAL ADOPTION CENTER Gloria Hochman 1500 Walnut St., Ste. 701 Philadelphia, PA 190102 (800) TOA-DOPT (215) 735-9988 (215) 735-9410 (FAX) [email protected] www.adopt.org 1,2,3,4,5,7,9 English

Architectural Accessibility CENTER FOR UNIVERSAL DESIGN Sharon Joines, PhD Campus Box 7701 / Brooks Hall Raleigh, NC 27695-7701 (800) 647-6777 (919) 515-3082 (919) 515-8951 [email protected] www.design.ncsu.edu/research/cud 2,4,6 English

Assistive Technology RESNA: REHABILITATION ENGINEERING AND ASSISTIVE TECHNOLOGY SOCIETY OF NORTH AMERICA Michael J. Brogioli 1700 N. Moore Street, Suite 1540 Arlington, VA 22209 (703) 524-6686 (703) 524-6630 (FAX) [email protected] www.resna.org 1,2,3,4,5,6,7

Bereavement Support CENTER FOR LOSS IN MULTIPLE BIRTH Jean Kollantai PO Box 91377 Anchorage, AK 99509 (907) 222-5321 (FAX) [email protected] www.climb-support.org

62 January 2017 • EP MAGAZINE/www.eparent.com

THE COMPASSIONATE FRIENDS, INC. P.O. BOX 3696 Oak Brook, IL 60522 (630) 990-0010 (877) 969-0010 (630) 990-0246 (FAX) [email protected] nds.org www.compassionatefriends.org 2,5,6 English, Spanish

Breastfeeding LA LECHE LEAGUE INTERNATIONAL Katie Keel, Executive Director. 35 E. Wacker Drive, Suite 850 Chicago, IL 60601 (312) 646-6260 (800) LA-LECHE (525-3243) (312) 644-8557 (FAX) [email protected] www.lalecheleague.org 1,2,3,4,5,6,9

Child Care CHILD CARE PLUS+: THE CENTER ON INCLUSION IN EARLY CHILDHOOD Sandra Morris 52 Corbin Hall University of Montana Rural Institute for Inclusive Communities Missoula, MT 59812 (406) 243-5467 (800) 732-0323 www.ccplus.org 1,2,7 English THE SPECIALINK NATIONAL CENTER FOR CHILD CARE INCLUSION Sharon Irwin 76 Cottage Road Sydney, NS B1P 2C7 (902) 562-1662 (902) 539-5140 (902) 539-9117 (FAX) [email protected] www.specialinkcanada.org 1,2,4,6,7 English, French

Developmental Disabilities EASTER SEALS CENTRAL PENNSYLVANIA Pam Seibert 153 Perry Highway Pittsburgh, PA 15229 412-281-7244 717-264-1309 (FAX) www.centralpa.easterseals.com 2,4,6,7,8,9 English

OHEL CHILDREN’S HOME AND FAMILY SERVICES Rabbi Simcha Feuerman 4510 16th Avenue Brooklyn, NY 11204 (800) 603-OHEL (718) 851-6300 [email protected] www.ohelfamily.org 2,3,4,6,7 English, Hebrew, Yiddish AAC-RERC ON COMMUNICATION ENHANCEMENT Kevin Caves PO Box 3887 Duke University Medical Center Durham, NC 27710 (919) 681-9983 (919) 681-9984 (FAX) [email protected] www.aac-rerc.com 1,2,6,7,8 English, Spanish DEVELOPMENTAL DELAY RESOURCES Patricia S. Lemer 150 Maple Heights Rd. Pittsburgh, PA 15232 (412) 450-0373 (412) 422-1374 (FAX) [email protected] www.devdelay.org 1,2,3,4 English, some Spanish HOUSTON AUTISM DISABILITY NETWORK Michelle M. Guppy P.O Box 1363 Cypress, TX 77410 (281) 686-0103 [email protected] www.TexasAutismAdvocacy.org 1,2,3,4 English, Spanish

Early Intervention DIVISION FOR EARLY CHILDHOOD OF THE COUNCIL FOR EXCEPTIONAL CHILDREN Ben Rogers 3415 s. Sepulveda Blvd, Ste 1100 Los Angeles, CA 90066 (310) 428-7209 (855) 678-1989 (FAX) [email protected] www.dec-sped.org 1,2,3,4,5,6,7 English PATHWAYS.ORG Pathways.org Team 150 N. Michigan Avenue, Chicago, IL 60601 (800) 955-2445 (888) 795-5884 (FAX) [email protected] www.pathways.org 1,2,3,4,6,7, Materials: Spanish, Chinese, English

Education NATIONAL COALITION OF TITLE I/CHAPTER I PARENTS 310 Pennsylvania Avenue SE 3rd Floor Washington, DC 20003 (202) 547-3135 (205) 925-5403 (FAX) nctic1p.org/

Employment NISH Bob Chamberlain 8401 Old Court House Rd. Vienna, VA 22182 (888) 411-8424 (703) 849-8916 (FAX) [email protected] www.nish.org 2,4,5,6,7 English NATIONAL FEDERATION OF THE BLIND Mark Riccobono, President 200 East Wells Street Baltimore, MD 21230 (410) 659-9314 (410) 685-5653 (FAX) [email protected] www.nfb.org 1,2,3,4,5,6,7,8 PARENTS ALLIANCE EMPLOYMENT PROJECT Kristen Tribe 2525 Cabot Drive, Suite 302 Lisle, IL 60532 630-955-2075 630-955-2098 630-955-2080 (FAX) [email protected] www.parents-alliance.org 4

General COUNCIL FOR EXCEPTIONAL CHILDREN Customer Service Council for Exceptional Children 2900 Crystal Drive, Suite 1000 Arlington, VA 22202-3557 (888) 232-7733 (703) 264-9494 (FAX) [email protected] www.cec.sped.org 6,7 English ACHIEVEMENT CENTERS FOR CHILDREN Katherine Henry 4255 Northfield Road Highland Hills, OH 44128 (216) 292-9721 (440) 250-2530 (FAX) [email protected] org www.achievementcenters.org/ 1,2,3,4,7 CHILDREN’S DEFENSE FUND Marian Wright Edelman 25 E Street, NW Washington, DC 20001 (800) 233-1200 [email protected] www.childrensdefense.org English FAMILY VOICES 2340 Alamo SE, Suite 102 Albequerque, NM 87106 (505) 872-4474 (888) 835-5669 (505) 872-4780 (FAX) [email protected] www.brightfuturesforfamilies.org/f amily_voices.shtml 1,2,3,4,5,6,9 Spanish, English, and some other languages

FRANÁOIS-XAVIER BAGNOUD CENTER University of Medicine & Dentistry of New Jersey Jamie Steiger, 65 Bergen Street, 8th Floor, Newark, NJ 07107 (973) 972-9646 (FAX) [email protected] www.fxbcenter.org NATIONAL FAMILY CAREGIVERS ASSOCIATION Suzanne Mintz 10400 Connecticut Ave, Suite 500 Kensington, MD 20895 (800) 896-3650 (301) 942-6430 (301) 942-2302 (FAX) [email protected] www.thefamilycaregiver.org 1,2,3,7 English, Spanish NATIONAL VACCINE INFORMATION CENTER Theresa Wrangham 21525 Ridgetop Circle, Suite 100 Sterling, VA 20166 (703) 938-0342 [email protected] www.nvic.org English RESNA Dawn Paulson 1700 N. Moore Street, Suite 1540 Arlington, VA 22209-1903 (703) 524-6686 (703) 524-6630 (FAX) www.resna.org 1,2,6 English SNAP: SPECIAL NEEDS ADVOCATE FOR PARENTS Maria Kraus 3029 Wilshire Blvd, #200 Santa Monica, CA 90403-2376 (888) 310-9889 (310) 452-3759 (310) 450-5769 (FAX) [email protected] 1,2,3,4,6,7 English STOMP: SPECIALIZED TRAINING OF MILITARY PARENTS C/O PAVE 6316 S 12th Street, Suite B Tacoma, WA 98465 (800) 572-7368 (253) 566-8052 (FAX) [email protected] www.wapave.org/programs/speci alized-training-military-parentsstomp 1,2,3,4,6,7 English VHL ALLIANCE (VON HIPPELLINDAU) Ilene Sussman 2001 Beacon Street, Suite 208 Boston, MA 02135-7787 (800) 767-4845 (858) 712-8712 (FAX) [email protected] www.vhl.org 1,2,3,4,5,6,7,8,9 English, Spanish, French, German, Italian, Japanese WASHINGTON STATE FATHER’S NETWORK Greg Schell Kindering, 16120 NE 8th Street Bellevue, WA 98008-3937 (425) 747-4004 ext 4286 (425) 747-1069 (FAX) www.fathersnetwork.org 1,2,3,4,5,6,7

WORLD INSTITUTE ON DISABILITY 3075 Adeline Street, Suite 280 Berkeley, CA 94703 (510) 225-6400 (510) 225-0478 (510) 225-0477 (FAX) [email protected] www.wid.org 1,2,4,7 English, Spanish ABOUT SPECIAL KIDS Jane Scott 7172 Graham Road, Suite 100 Indianapolis, IN 46250 (317) 257-8683 (800) 964-4746 (317) 251-7488 (FAX) [email protected] www.aboutspecialkids.org/ 1,2,3,4 English, Spanish ACHIEVEMENT CENTERS FOR CHILDREN Sally Farwell 4255 Northfield Road Highland Hills, OH 44128 (216) 292-9700 (216) 292-9721 (FAX) www.achievementcenters.org CAMP CHEERFUL Tim Fox 15000 Cheerful Lane Strongsville, OH 44136 (440) 238-6200 (440) 238-1858 (FAX) [email protected] www.achievementcenters.org EASTER SEALS Jeann Conrad 233 South Wacker Dr. Suite 2400 Chicago, IL 60606 (800) 221-6827 (312) 726-4258 (312) 726-1494 (FAX) [email protected] www.easterseals.com/site/PageSe rver?pagename=ntl_accessibility FRIENDSHIP MINISTRIES Mary Schuurmans 2850 Kalamazoo Ave SE Grand Rapids, MI 49560 (616) 224-0842 (800) 642-8606 1,2,4 English, Spanish, Korean HIDDEN MIRACLES MINISTRY Barbara McNeely 201 Gayleh Ln Waxahachie, TX 75165 972-937-6255 [email protected] www.hiddenmiraclesministry.org 5 NPA: NATIONAL PERINATAL ASSOCIATION Kristy Love PO Box 392 Lonedell, MO 63060 (888) 971-3295 [email protected] www.nationalperinatal.org 1,6 PARENT RESOURCE NETWORK OFFICE Kelly Fraasch, P.O. Box 11875 Pittsburgh, PA 15228 (877) 647-4373 (412) 580-7665 [email protected] .org www.parentresourcenetwork.org

SAVE BABIES THROUGH SCREENING FOUNDATION Jill Levy-Fisch PO Box 42197 Cincinnati, OH 45242 (770) 489-4992 (888) 454-3383 (770) 726-4635 (FAX) [email protected] www.savebabies.org 1,2,4,7 English, some Spanish materials

Genetics GENETIC ALLIANCE INC Sharon Terry 4301 Connecticut Ave. NW Suite 404 Washington, DC 20008 (202) 966-5557 (202) 966-8553 (FAX) [email protected] www.geneticalliance.org 7,9,2 English HEREDITARY DISEASE FOUNDATION Nancy S. Wexler, Ph.D. 3960 Broadway, 6th Floor New York, NY 10032 (212) 928-2121 (212) 928-2172 (FAX) [email protected] www.hdfoundation.org English

Healthcare National Health Council 1730 M St. NW, Ste. 500 Washington, DC 20026-4561 (202) 785-3910 (202) 785-5923 [email protected] www.nhcouncil.org (FAX) ST. MARY_S HEALTHCARE SYSTEM FOR CHILDREN Rhonda Broden 29-01 216th St Bayside, NY 11360 (718) 281-8800 (888) KID-SNYS (718) 423-6001 (FAX) [email protected] www.stmaryskids.org Translation services available

Hospice Care CIRCLE OF LIFE CHILDREN’S CENTER, INC. Norma Godin Millison 851 North Broad Street Elizabeth, NJ 07208 (908) 353-5061 (908) 353-5062 (FAX) [email protected] www.circleoflifenj.org 2,4

Hospitality Housing CHILDRENS HOSPICE INTERNATIONAL 500 Montgomery St, Suite 400 Alexandria, VA 22314 (800) 24-CHILD (703) 684-0330 [email protected] www.chionline.org

HOSPITALITY HOMES Emma Galin-Attleson Program Manager PO Box 15265 Boston, MA 02215 (888) 595-4678 (617) 582-7980 (FAX) [email protected] www.hosp.org 3,4 English NATIONAL ASSOCIATION OF HOSPITAL HOSPITALITY HOUSES Phyllis Youngberg PO Box 1439 Gresham, OR 97030 (800) 542-9730 (828) 253-1188 (828) 253-8082 (FAX) [email protected] www.nahhh.org 1,2,4,6,7,8,9 English

Independent Living THREE RIVERS CENTER FOR INDEPENDENT LIVING. Cindy Williams TRCIL Services, Inc. 901 Pennsylvania Ave, Suite 5 Pittsburgh, PA 15233 (412) 371-7700 ext 136 (800) 633-4588 (412) 371-9430 (FAX) [email protected] www.trcil.org 2,3,4 DISABLED AND ALONE/LIFE SERVICES FOR THE HANDICAPPED, INC. Lee Alan Ackerman 1440 Broadway, 23rd Floor New York, NY 10018-2326 (212) 532-6740 (800) 995-0066 (212) 532-3588 (FAX) [email protected] www.disabledandalone.org 1,2,4,6,7 English INDEPENDENT LIVING RESEARCH UTILIZATION PROGRAM 1333 Moursund Houston, TX 77030 (713) 520-0232 (713) 520-5785 (FAX) [email protected] www.ilru.org 2 English, Spanish

KEY TO SERVICES 1 2 3 4 5 6 7 8 9

Periodical/newsletter Informational materials Networking/matching Referrals to local resources Local chapters National conferences National advocacy efforts Fund research Maintain research registry

COUNTIES CENTER FOR INDEPENDENT LIVING OF CENTRAL PA In Cumberland, Dauphin, Mifflin, Juniata and Perry Counties PA Living Well I&R specialist 207 House Ave, Suite 107 Camp Hill, PA 17011 (717) 731-1900 (800) 323-6060 (717) 731-8150 (FAX) [email protected] www.cilcp.org English, Spanish

Information and Referrals INFORMATION & REFERRAL, COMPREHENSIVE ONLINE DATABASE, EZINE,LENDING LIBRARY,CONFERENCES & TRAININGS Jacqueline A. Moskowitz 35 Beaverson Blvd. Building 11 Brick, NJ 08723 (732) 262-8020 (732) 262-4373 (FAX) [email protected] www.fscnj.org 2,4, English BETHESDA INSTITUTE WITH BETHESDA LUTHERAN COMMUNITIES Thomas Heuer 700 Hoffmann Dr. Watertown, WI 53094 (800) 369.4636 (920) 262-6513 (FAX) [email protected] www.bethesdalutherancommuniti es.org 1,2,4,7 English

Legal Assistance DREDF: DISABILITY RIGHTS EDUCATION AND DEFENSE FUND PTI center serving Alameda, Contra Costa, & Yolo counties 3075 Adeline Street, Suite 210 Berkeley, CA 94703 (510) 644-2555 (800) 348-4232 (510) 841-8645 (FAX) [email protected] www.dredf.org 1,2,4,7 Spanish, Mandarin and Cantonese Chinese NATIONAL DISABILITY RIGHTS NETWORK Monica Ball 820 1st Street NE, Suite 740 Washington, DC 20002 (202) 408-9514 (220) 408-9521 (202) 408-9520 (FAX) [email protected] www.ndrn.org 1,2,3,4,5,6,7,8 English

Rare Disorders NORD: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. 55 Kenosia Ave PO Box 1968 Danbury, CT 06810 (203) 744-0100 (203) 263-9938 (FAX) [email protected] www.rarediseases.org 1,2,3,4,6,7,8 English

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National Information and Advocacy Resources

MUMS: NATIONAL PARENT TO PARENT NETWORK Julie Gordon 150 Custer Ct. Green Bay, WI 54301-1243 (920) 336-5333 (877) 336-5333 (920) 339-0995 (FAX) [email protected] www.netnet.net/mums/ 1,2,3,4,5,9 We can match according to languages spoken.

Rehabilitation EASTER SEALS CANADA Max Beck 40 Holly St, Suite 401 Toronto, ON M4S 3C3 (416) 932-8382 (877) 376-6362 (416) 932-9844 (FAX) [email protected] www.easterseals.ca 1,2,5 French, English EASTER SEALS Heather Withrow 18 North Oller Avenue Waynesboro, PA 17268 (717) 762-5315 (888) 372-7280 (717) 762-0362 (FAX) 1,2,4,5 English

Respite Care BELIEVE IN TOMORROW NATIONAL CHILDREN’S FOUNDATION Brian Morrison 6601 Frederick Road Baltimore, MD 21228 (410) 744-1032 (410) 744-1984 (FAX) [email protected] www.believeintomorrow.org 1,2,3,4 English ARCH NATIONAL RESPITE LOCATOR SERVICE 800 Eastowne Dr., Ste 105 Chapel Hill, NC 27514 (703) 256-2084 (703) 256-0541 (FAX) [email protected] www.respitelocator.org 1,2,3,4,5,6,7

Self-Help AMERICAN SELF-HELP GROUP CLEARINGHOUSE Michael Adam Reale, Information Services Supervisor 375 E. McFarlan Street Dover, NJ 07801 (973) 989-1122 (800) 367-6274 (973) 989-1159 (FAX) [email protected] www.selfhelpgroups.org 1,2,3,4 English NATIONAL SELF-HELP CLEARINGHOUSE Audrey Gartner CUNY Grad School, University Ctr 365 Fifth Ave., Ste. 3300 New York, NY10016-4309 (212) 817-1822 (212) 817-1561 (FAX) www.selfhelp.org 4

Sexuality Sexuality Information and Education Council of the U.S. Patrick Malone PO Box 5175 New York, NY10185-5175 (212) 819-9770 (212) 819-9776 (FAX) www.siecus.org 1,2,4,6,7,8,9 English, Spanish

Suicide Prevention AMERICAN FOUNDATION FOR SUICIDE PREVENTION Robert Gebbia 120 Wall St.,ˇ 29th floor New York, NY 10005 (212) 363-3500,12 (888) 333-AFSP (212) 363-6237 (FAX) [email protected] www.afsp.org 1,2,4,5,6,7,8,9 English, some Spanish

Support FRIENDS’ HEALTH CONNECTION Roxanne Black-Weisheit PO Box 114 New Brunswick, NJ 08903 (800) 483-7436 (732) 418-1811 (732) 249-9897 (FAX) [email protected] www.friendshealthconnection.org 2,3

Toy Lending and Adaptations

University Centers on Disabilities

THE NATIONAL LEKOTEK CENTER Kathryn H. Lavin, Executive Director 2001 N. Clybourn Ave, Suite 100 Chicago IL 60614 (773) 528-5766 (800) 366-PLAY (773) 537-2992 (FAX) [email protected] www.lekotek.org/ 2,5,7 English, some Spanish materials

ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES Andy Imparato 1100 Wayne Avenue Suite 1000 Silver Spring, MD 20910 (301) 588-8252 (301) 588-2842 (FAX) [email protected] www.aucd.org 1,2,3,4,5,6,7,8,9 English

Training Programs PROJECT DOCC-DELIVERY OF CHRONIC CARE Maggie Hoffman 719 Fassett Rd Elmira, NY 14905 [email protected] www.projectdocc.org 2,3,4,5,6 Medical education where parents are the faculty

Travel AMERICAN SPECIAL CHILDREN’S PILGRIMAGE GROUP Gerard P. Flood PO Box 633 Bergenfield, NJ 07621 (201) 873-8054 [email protected] www.ascpg-lourdes.org 2,5 English MOBILITY INTERNATIONAL USA Michele Scheib 132.E Broadway Suite 343 Eugene, OR 97401 (541) 343-1284 (541) 343-6812 (FAX) [email protected] www.miusa.org 1,2,3,4 English, Spanish SATH-THE SOCIETY FOR THE ACCESSIBLE TRAVEL & HOSPITALITY Jani Nayar 2175 Hudson St Fort Lee, NJ 07024 (212) 447-7284 (212) 447-1928 (FAX) [email protected] www.sath.org 2,4,5,6,7,9 English, Portuguese, Spanish, Malayalam, Tamil, Hindi

Visual Impairments NATIONAL ASSOCIATION FOR PARENTS OF CHILDREN WITH VISUAL IMPAIRMENTS Susan LaVenture 15 West 65th Street New York, NY 10023 (800) 562-6265 (800) 562-6265 [email protected] 1,2,3,5,6,7 English, Spanish

Wish Granting Organizations SUNSHINE FOUNDATION Dianne Mazzeo 1041 Mill Creek Drive Feasterville, PA 19053 (215) 396-4770 (800) 767-1976 (215) 396-4774 (FAX) [email protected] www.sunshinefoundation.org 1,2,5 English THE CHILDREN’S WISH FOUNDATION OF CANADA NATIONAL OFFICE Linda Marco 7-725 Westney Road South Ajax, ON L1S 7J7 (905) 427-5353 (800) 267-WISH (9474) (905) 427-0536 (FAX) [email protected] www.childrenswish.ca/ 1,2,3,5,6,7 English, French THE DREAM FACTORY 120 W. Broadway, Suite 300 Louisville, KY 40202 (800) 456-7556 (502) 561-3001 (502) 561-3004 (FAX) [email protected] http://www.dreamfactoryinc.org 1,2,4,5,6

THE MARTY LYONS FOUNDATION Mary Ann Canapi 354 Veterans Memorial Highway Suite 9 Commack, NY 11725 (212) 977-9474 (631) 543-9479 (FAX) [email protected] www.martylyonsfoundation.org 1,2,4,5 English, Spanish CHILDREN’S HOPES AND DREAMS Wish Fullfillment Foundation 86 Auble Road Blairstown, NJ 07825 (973) 361-7366 (973) 361-6627 (FAX) [email protected] www.childrenswishes.org CHILDREN’S WISH FOUNDATION INTERNATIONAL 8615 Roswell Rd. Atlanta, GA 30350 (800) 323-WISH (9474) (7700 393-0683 (FAX) [email protected] www.childrenswish.org 1,2,3,8 English MAKE-A-WISH FOUNDATION OF AMERICA Brent Goodrich 4742 N. 24th St., Suite 400 Phoenix, AZ 85016 (602) 279-9474 (800) 722-9474 (602) 279-0855 (FAX) www.wish.org 2,5,6 English, Spanish MASSMUTUAL/DBS FINANCIAL GROUP, SOUTH FLORIDA Harlan M. Singer, LUTCF, CLTC 1000 Corporate Drive, 7th Floor Ft. Lauderdale, FL 33334 (954) 689-9448 (305) 298-1457 (954) 351-2468 (FAX) [email protected] www.financialguide.com/HarlanSinger English AMERICAN ASSOCIATION ON HEALTH AND DISABILITY Roberta Carlin 110 N. Washington St, Suite 328J Rockville, MD 20850 (301) 545-6140 (301) 545-6144 (FAX) [email protected] www.aahd.us 1,2,3,7 English

KEY TO SERVICES 1 2 3 4 5 6 7 8 9

64 January 2017 • EP MAGAZINE | eparent.com

Periodical/newsletter Informational materials Networking/matching Referrals to local resources Local chapters National conferences National advocacy efforts Fund research Maintain research registry

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Early Intervention Programs

THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA) partially supports early intervention programs for infants and toddlers, birth through two who have developmental delays, including those diagnosed with conditions with high probability of delay, in all states and most territories. IDEA requires preschool special education for three through five year old children with disabilities in all jurisdictions. This directory lists the following resources for each state or territory: Coordinators of infant and toddler programs, known as Part C programs, also maintained at http://ectacenter.org/contact/ptccoord.asp Coordinators of preschool special education programs, known as Part B-Section 619 programs, also maintained at http://ectacenter.org/contact/619coord.asp These listings are provided by the Early Childhood Technical Assistance Center [ECTA Center, FPG Child Development Institute, The University of North Carolina at Chapel Hill, Campus Box 8040, Chapel Hill, NC 27599-8040; telephone: (919) 962-2001; email: [email protected]]. ECTA Center is funded by the Office of Special Education Programs, U.S. Department of Education, cooperative agreement, H326P120002 This directory is current as of December 2016.

Alabama ELIZABETH PRINCE Part C Coordinator Early Intervention Program Department of Rehabilitation Services 602 South Lawrence Street Montgomery, AL 36104 (334) 293-7166 (334) 293-7375 (FAX) [email protected] http://rehab.alabama.gov/individuals-and-families/early-intervention/ei-general-information / www.rehab.alabama.gov/individu als-and-families/earlyintervention/ei-generalinformation STEPHANIE FRUCCI 619 Coordinator Education Specialist Special Education Services State Department of Education PO Box 302101 Montgomery, AL 36130-2101 (334) 242-8114 [email protected]

Alaska TRACY SPARTZ CAMPBELL Deputy Director Office of Children’s Services Alaska Dept of Health and Social Services PO Box 110630 Juneau, AK 99811-0630 (907) 465-4894 (907) 269-8442 [email protected] http://dhss.alaska.gov/ocs/Pages/ infantlearning/referral/default.asp Early Intervention/Infant Learning Programs Office of Children's Services State of Alaska/DHSS 323 East 4th Avenue PO Box 240249 Anchorage, AK 99501 [email protected] (907) 269-8442 (907) 269-8442 http://dhss.alaska.gov/ocs/Pages/ infantlearning/referral/default.asp

CASSIDY JONES 619 Coordinator Education Specialist II State Department of Education and Early Development 801 West 10th Street PO Box 110500 Juneau, AK 99801-0500 (907) 465-8702 [email protected]

Arkansas TRACY TURNER Part C Coordinator Department of Human Services Division of Developmental Disabilities PO Box 1437, Slot N504 Little Rock, AR 72203-1437 (501) 682-8703 (800) 643-8258 [email protected] http://humanservices.arkansas.go v/ddds/Pages/FirstConnectionsPr ogram.aspx YVONNE GREENE Coordinator Special Education State Department of Education 1401 West Capitol Mall, Suite 450 Little Rock, AR 72201-1021 (501) 682-4225 [email protected]

American Samoa RUTH TE’O Acting Part C Coordinator Department of Health Helping Hands Early Intervention Program Early Hearing Detection and Intervention PO Box 7477 Pago Pago, AS 96799 (684) 699-4987 [email protected] SEGIA IOANE Preschool Contact Special Education Division Department of Education PO Box 4120 Pago Pago, AS 96799 (684) 633-1323 [email protected]

66 January 2017 • EP MAGAZINE | eparent.com

Arizona KARIE TAYLOR Part C Coordinator Arizona Early Intervention Program Department of Economic Security 3839 North 3rd Street, Suite 304 Site Code #801 A-6 Phoenix, AZ 85012 (602) 532-9960 (602) 532-9960 (888) 439-5609 (outside Maricopa) [email protected] https://extranet.azdes.gov/azeip/ azeipref/Forms/Categories.aspx SUZANNE PERRY 619 Coordinator Arizona Department of Education 1535 West Jefferson, Bin #24 Phoenix, AZ 85007 (602) 542-1113 [email protected]

California SHARON DEREGO Manager/Part C Coordinator Monitoring and Family Services Branch Department of Developmental Services 1600 9th Street, MS 3-11 Sacramento, CA 95814 (916) 654-3681 (800) 515-BABY [email protected] http://www.dds.ca.gov/EarlyStart/ WhatsES.cfm SHEILA SELF 619 Coordinator Educational Program Consultant Special Education Division 1430 N Street, Suite 2401 Sacramento, CA 95814 (916) 327-3702 [email protected]

Colorado

Department of Defense

CHRISTY SCOTT Early Intervention Program Director/Part C Coordinator CDHS Office of Early Childhood Division of Community and Family Support 1575 Sherman Street, 1st Floor Denver, CO 80203 (303) 866-2664 (888) 777-4041 [email protected] http://www.eicolorado.org/index. cfm?fuseaction=ContactUs.Main& content=state PENNY DELL 619 Coordinator Exceptional Students Services Unit 1560 Broadway, Suite 1175 Denver, CO 80203 (303) 866-6720 [email protected]

NAOMI YOUNGGREN Program Manager Educational and Developmental Intervention Services, Health Policy and Services HQ, US Army Medical Command Europe Regional Medical Command Attn: Behavioral Health Division (BHD)/EDIS Unit 29421 APO AE 09136-9421 00149-6302-67-8877 [email protected] https://www.edis.army.mil/eisproc ess.html DAVID JOHANSEN DoDEA Lead Education for Students with Disabilities 4800 Mark Center Drive Alexander, VA 22350-1400 (571) 372-2846 [email protected]

Connecticut

Delaware

LYNN SKENE JOHNSON Acting Part C Coordinator Birth to Three System Office of Early Childhood 460 Capitol Avenue Hartford, CT 06106-1308 (860) 418-6141 (800) 505-7000 [email protected] http://www.birth23.org/referrals/ Maria Synodi 619 Coordinator Bureau of Special Education State Department of Education 165 Capitol Avenue Hartford, CT 06106 (860) 713-6941 [email protected]

SUSAN CAMPBELL Part C Coordinator Birth to Three Early Intervention System Herman M. Holloway, Sr. Campus Main Administration Building 1901 N. DuPont Highway, Ste 249 New Castle, DE 19720 (302) 255-9137 (800) 671-0050 (New Castle County) (800) 752-9393 (Kent and Sussex Counties) http://www.dhss.delaware.gov/dh ss/dms/birth3pubs.html [email protected]

District of Columbia

LAURA RUMPH Early Steps Section Administrator Children’s Medical Services Florida Department of Health 4052 Bald Cypress Way, Bin A09 Tallahassee, FL 32399 (850) 245-4857 (800) 218-0001 [email protected] http://www.earlystepsdirectory.com

Jerri Johnston-Stewart Program Manager Office of the State Superintendent of Education (OSSE) Strong Start DC Early Intervention Program (DCEIP),Division of Early Learning 1371 Harvard Street, NW, 1st Floor Washington, DC 20009 (202) 727-5853 (202) 727-3665 [email protected] http://osse.dc.gov/service/strongstart-dc-early-interventionprogram-dc-eip-screening-andreferral-information CARLENE REID Supervisory Coordinator for Special Education (Part B, 619) Division of Early Learning Office of the State Superintendent for Education (OSSE) 810 First Street NE, 9th Floor Washington, DC 20002 (202) 727-7635 [email protected]

Florida

BETH MOORE 619 Coordinator/Senior Educational Program Director Bureau of Exceptional Education and Student Services Florida Department of Education 325 West Gaines St, Suite 614 Tallahassee, FL 32399-0400 (850) 245-0970 [email protected] CAROLE WEST Part C Liaison Bureau of Exceptional Education and Student Services State Department of Education 325 West Gaines St, Suite 601 Tallahassee, FL 32399-0400 (850) 245-0478 [email protected]

Federated States of Micronesia ARTHUR ALBERT Director of Special Education FSM Special Education HESA PO Box P Kolonia, Pohnpei, FM 96941 (691) 320-8982 [email protected] CYNTHIA SAIMON Early Childhood Special Education Coordinator Department of Education Federated States of Micronesia PO Box P Kolonia, Pohnpei, FM 96941 (691) 320-8982 [email protected]

Georgia DONNA JOHNSON State Director Children and Youth with Special Health Care Needs Georgia Department of Public Health 2 Peachtree Street, 11th Floor Atlanta, GA 30303 (404) 657-2850 (800) 229-2038 [email protected] http://dph.georgia.gov/servicesbabies-cant-wait LYNN HOLLAND Interim 619 Coordinator Divisions for Special Education Services and Supports State Department of Education 1870 Twin Towers East 205 Jesse Hill Jr. Drive, SE Atlanta, GA 30334 (404) 657-9965 [email protected]

Guam CATHY TYDINGCO Part C Coordinator Division of Special Education Department of Education PO Box DE Hagåtña, GU 96932 (671) 300-5776 (671) 300-5816 [email protected] https://sites.google.com/a/gdoe. net/geis/make-a-referr

Hawaii CHARLENE ROBLES EIS Supervisor/Part C Coordinator Department of Health Early Intervention Section 1350 South King Street, Suite 200 Honolulu, HI 96814 (808) 594-0007 (808) 594-0066 (for Oahu) (800) 235-5477 (for Neighbor Islands) [email protected] PATRICIA DONG 619 Coordinator Educational Specialist OCISS, Special Education Section 475 22nd Avenue Building 302, Room 108B Honolulu, HI 96816 (808) 203-5560 [email protected]

Iowa CINDY WEIGEL State Coordinator Early ACCESS (IDEA/Part C) Iowa Department of Education Bureau of Early Childhood Services 400 E. 14th Street Des Moines, IA 50319 (515) 281-8634 (888) 425-4371 [email protected] http://www.iafamilysupportnetwork.org/early-access-iowa/whatis-ea DEE GETHMANN ECSE Consultant Iowa Department of Education Early Childhood Services 400 E. 14th St, Grimes Building Des Moines, IA 50319-0146 (515) 281-5502 [email protected]

CHRISTINA FURBEE 619 Coordinator Department of Education 115 W. Washington Street South Tower, Suite 600 Indianapolis, IN 46204 (317) 232-9142 [email protected]

Kansas

CRONHEIM, CHRISTY Program Manager Children’s Developmental Services State Department of Health and Welfare 450 West State Street, 5th Floor PO Box 83720 Boise, ID 83720-0036 (208) 334-5590 (208) 334-6530 [email protected] SHANNON DUNSTAN 619 Coordinator State Department of Education 650 West State Street PO Box 83720 Boise, ID 83720-0027 (208) 332-6908 [email protected]

HEATHER SMITH Director, Special Health Service, Interim Part C Coordinator Infant-Toddler Services Kansas Department of Health and Environment 1000 SW Jackson, Suite 220 Topeka, KS 66612 (785) 296-4747 (785) 296-6135 (800) 332-6262 [email protected] http://www.ksits.org/download/ne twork_brochure.pdf BARBARA A. DAYAL Section 619 Coordinator Early Childhood, Special Education and Title Services Kansas State Department of Education Landon State Office Building 900 SW Jackson St., Suite 620 Topeka, KS 66612-1212 (785) 296-4941 [email protected] VERA LYNNE STROUP-RENTIER, PH.D. Assistant Director Early Childhood, Special Education and Title Services Kansas State Department of Education Landon State Office Building 900 SW Jackson St., Suite 620 Topeka, KS 66612-1212 (785) 296-4941 [email protected]

Illinois

Kentucky

ANN FREIBURG Acting Part C Coordinator Department of Human Services Bureau of Early Intervention 823 East Monroe Springfield, IL 62701 (217) 782-0516 (800) 323-4769 [email protected] http://www.dhs.state.il.us/page.as px?module=12&OfficeType=4&C ounty KRISTY DOAN Principal Consultant, Early Childhood IL State Board of Education Division of Early Childhood 100 N. First Street, E-225 Springfield, IL 62777 (217) 524-4835 [email protected]

PAULA GOFF Part C Coordinator First Steps Early Childhood Development Branc Department for Public Health 275 East Main Street, HS2WC Frankfort, KY 40621 (502) 564-3756 (877) 417-8377 [email protected] http://chfs.ky.gov/dph/firststeps/d efault.htm SALLY SHEPHERD 619 Coordinator Department of Education Office of Next Generation Learners School Readiness Branch 500 Mero Street, 17th Floor Frankfort, KY 40601 (502) 564-7056 [email protected]

Idaho

Indiana SHIRLEY HUNTSMAN Part C Director First Steps, Bureau of Child Development Services Division of Disability Rehabilitation 402 West Washington Street Room 451, MS51 Indianapolis, IN 46204 (317) 234-1527 (800) 545-7763 [email protected] http://www.in.gov/fssa/ddrs/2814.htm

Louisiana

Maine

BRENDA SHARP Part C Coordinator Office for Citizens with Developmental Disabilities PO Box 3117 628 North Fourth Street, Bin #21 Baton Rouge, LA 70821-3117 (225) 342-0095 (866) 327-5978 [email protected] http://new.dhh.louisiana.gov/inde x.cfm/page/215 IVY STARNS 619 Coordinator Louisiana Department of Education 1201 N. Third Street Baton Rouge, LA 70802 (225) 342-3647 [email protected]

CINDY BROWN CDS State Director Child Development Services Department of Education State House Station #146 Augusta, ME 04333 (207) 624-6660 (877) 770-8883 [email protected] http://www.maine.gov/doe/cds/fa milies/referrals/

Massachusetts RON BENHAM Part C Coordinator State Department of Public Health 250 Washington Street, 5th Floor Boston, MA 02108-4619 (617) 624-5901 (800) 905-8437 (EI Central Directory) [email protected] http://www.mass.gov/eohhs/gov/ departments/dph/programs/famil y-health/early-intervention/familyinfo/ LAUREN VIVIANI 619 Coordinator Special Education Planning and Policy State Dept. of Elementary and Secondary Education 75 Pleasant Street, 4th Floor Malden, MA 02148 (781) 338-3372 [email protected]

Maryland BRIAN MORRISON Part C Coordinator Maryland Infants and Toddlers Program Div. of Special Education/Early Intervention Services State Department of Education 200 West Baltimore St, 9th Floor Baltimore, MD 21201 (410) 767-0863 (800) 535-0182 [email protected] http://ei.mdecgateway.org NANCY VOROBEY Section Chief Early Childhood Intervention and Education Division of Special Education/Early Intervention Services State Department of Education 200 West Baltimore Street Baltimore, MD 21201 (410) 767-0234 [email protected]

Marshall Islands FRANK HORIUCHI Special Education Coordinator RMI Ministry of Education P O Box 911 Majuro, MH 96960 (692) 625-5262 [email protected] RAMONA ALBERT Special Education Specialist Special Education Program P O Box 3179 Majuro, MH 96960 (692) 625-8398 [email protected]

Michigan VANESSA WINBORNE Part C Coordinator Early On Michigan Office of Early Childhood Education and Family Services State Department of Education PO Box 30008 Lansing, MI 48909-7508 (517) 335-4865 (800) 327-5966 [email protected] https://1800earlyon.org/online_re ferral.php LISA WASACZ 619 Coordinator Early Childhood Special Education Preschool and Out-of-School Time Learning, Office of Great Start Michigan Department of Education/ State Department of Education 608 West Allegan PO Box 30008 Lansing, MI 48909-7508 (517) 241-4520 [email protected] RICHARD LOWER Director Preschool and Out-of-School Time Learning Office of Great Start Michigan Department of Education 608 West Allegan PO Box 30008 Lansing, MI 48909-7508 (517) 373-8483 [email protected]

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Early Intervention Programs

Minnesota KARA TEMPEL Part C Coordinator State Department of Education Early Learning Services 1500 Highway 36 West Roseville, MN 55113-4266 (651) 582-8495 (866) 693-4769 [email protected] http://www.parentsknow.state.mn. us/parentsknow/Newborn/HelpM eGrow_SpecialNeeds/index.html JENNIFER MOSES 619 Coordinator Early Learning Services Division State Department of Education 1500 Highway 36 West Roseville, MN 55113 (651) 582-8473 [email protected]

Missouri PAM THOMAS Part C Coordinator Department of Elementary and Secondary Education Early Intervention Services PO Box 480 Jefferson City, MO 65102-0480 (573) 751-3559 (866) 583-2392 [email protected] http://dese.mo.gov/specialeducation/first-steps/how-makereferral PAM WILLIAMS 619 Coordinator Special Education Compliance Department of Elementary and Secondary Education 205 Jefferson Street PO Box 480 Jefferson City, MO 65102-0480 (573) 751-4909 [email protected]

Northern Mariana Islands ROBIN PALACIOS Coordinator CNMI Public Schools PO Box 504137CK Saipan, MP 96950 (670) 483-3903 [email protected] SUZANNE LIZAMA Coordinator CNMI Public Schools PO Box 501370 Saipan, MP 96950 (670) 664-3754 [email protected]

Mississippi STACY CALLENDER Director Early Intervention Program (First Steps) State Department of Health 570 East Woodrow Wilson PO Box 1700 Jackson, MS 39215-1700 (601) 576-7816 (800) 451-3903 (in MS) [email protected] http://www.msdh.state.ms.us/msd hsite/index.cfm/41,0,74,324,html

BRITTANY HERRINGTON Section 619 Coordinator Office of Special Education Mississippi Department of Education 359 North West Street PO Box 771 Jackson, MS 39201 (601) 359-2586 [email protected]

Montana WENDY STUDT Part C Coordinator Developmental Disabilities Program Community Services Bureau Department of Public Health and Human Services PO Box 4210 Helena, MT 59604-4210 (406) 444-5647 See regional phone numbers at the Referral Website [email protected] http://www.dphhs.mt.gov/fssac/pr oviders.pdf DANNI MCCARTHY Compliance Specialist Division of Special Education Office of Public Instruction PO Box 202501 Helena, MT 59620-2501 (406) 444-0452 [email protected]

North Carolina JILL SINGER EI Branch Head Early Intervention Branch Women's and Children's Health Section, Division of Public Health 5605 Six Forks Road 1916 Mail Service Center Raleigh, NC 27699-1916 (919) 707-5520 (919) 707-5520 [email protected] http://www.beearly.nc.gov/index. php/contact/cdsa VIVIAN JAMES 619 Preschool Coordinator State Dept. of Public Instruction and Exceptional Children's Program NC Office of Early Learning 2075 Mail Service Center Raleigh, NC 27699-2075 (919) 218-8384 [email protected]

North Dakota AMANDA CARLSON Part C Coordinator Developmental Disabilities Division Department of Human Services 1237 West Divide Ave, Suite 1A Bismarck, ND 58501 (701) 328-8936 (800) 755-8529 [email protected] http://www.nd.gov/dhs/services/d isabilities/earlyintervention GERRY TEEVENS Director Office of Special Education Department of Public Instruction 600 East Boulevard Ave, Dept 201 Bismarck, ND 58505-0440 (701) 328-2277 [email protected]

68 January 2017 • EP MAGAZINE | eparent.com

VALERIE BAKKEN 619 Coordinator Office of Special Education Department of Public Instruction 600 East Boulevard Ave, Dept 201 Bismarck, ND 58505-0440 (701) 328-2277 [email protected]

Nebraska AMY BUNNELL Part C Co-Coordinator Early Development Network Nebraska Department of Education 301 Centennial Mall South Lincoln, NE 68509 (402) 471-0817 (888) 806-6287 [email protected] http://edn.ne.gov/cms/products/f amily-members JULIE DOCTER Part C Co-Coordinator School Based Services/Early Development Network DHHS - Medicaid & Long-Term Care 301 Centennial Mall South, 5 PO Box 95026 Lincoln, NE 68509-5026 (402) 471-1733 Julie.Doct[email protected] TERESA BERUBE 619 Coordinator Office of Special Education Nebraska Department of Education 301 Centennial Mall South PO Box 94987 Lincoln, NE 68509-4987 (402) 471-4319 [email protected]

New Hampshire KERRY WILEY Part C Coordinator/Program Specialist Family Centered Early Supports and Services Bureau of Developmental Services Department of Health and Human Services 105 Pleasant Street Concord, NH 03301 (603) 271-7224 (800) 298-4321 [email protected] http://www.dhhs.nh.gov/dcbcs/b ds/earlysupport/refer.htm RUTH LITTLEFIELD 619 Coordinator Bureau of Special Education State Department of Education 101 Pleasant Street Concord, NH 03301-3860 (603) 271-2178 [email protected]

New Jersey TERRY HARRISON Part C Coordinator Early Intervention System Division of Family Health Services Department of Health and Senior Services PO Box 364 Trenton, NJ 08625-0364 (609) 777-7734 (888) 563-4463 [email protected] http://nj.gov/health/fhs/documents/schs_cmu.pdf

BARBARA TKACH 619 Coordinator Office of Special Education Programs CN 500 Riverview Executive Plaza, Building 100 Trenton, NJ 08625 (609) 984-4950 [email protected]

New Mexico ANDY GOMM Program Manager Family Infant Toddler (FIT) Program State Department of Health/DDSD 810 San Mateo Santa Fe, NM 87506 (505) 476-8975 (877) 696-1472 [email protected] http://archive.nmhealth.org/ddsd/ nmfit/Referral/Referral.htm CATHERINE QUICK 619 Coordinator Special Education Bureau Public Education Department 120 South Federal Pl, Room 206 Santa Fe, NM 87501 (505) 827-6561 [email protected] SUE BEMENT Acting Supervisory Ed Specialist, Early Childhood Division of Performance and Accountability Bureau of Indian Education/Albuquerque Service Center 1011 Indian School Road, NW, Suite 332 Albuquerque, NM 87104 (505) 563-5274 See regional phone numbers at the Referral Website [email protected] http://www.ectacenter.org/topics/ bie/biecontacts.asp

Nevada BRENDA BLEDSOE Part C Coordinator Department of Health and Human Services IDEA, Part C Office 4126 Technology Way, Suite 100 Carson City, NV 89706 (775) 687-0554 (800) 522-0066 [email protected] http://dhhs.nv.gov/Programs/IDE A/Early_Intervention_Programs/ SHERRY HALLEY 619 Coordinator Office of Educational Opportunity State Department of Education 9890 S. Maryland Pkwy, Suite 221 Las Vegas, NV 89183 (702) 486-6460 [email protected]

New York BRENDA KNUDSON CHOUFFI Co-Director Bureau of Early Intervention State Department of Health Corning Tower Building, Rm 287 Empire State Plaza Albany, NY 12237-0660 (518) 473-7016 (800) 577-2229 (in NYC) [email protected] .gov

DONNA NOYES Co-Director Bureau of Early Intervention State Department of Health Corning Tower Building, Rm 287 Empire State Plaza Albany, NY 12237-0660 [email protected] PATRICIA GEARY Coordinator Special Education Policy and Professional Development Office of Special Education Education Department 89 Washington Avenue Albany, NY 12234 (518) 473-2878 [email protected]

Ohio NATHAN DEDINO State Part C Coordinator Ohio Department of Health (ODH) Bureau for Children with Developmental and Special Health Care Needs 246 N. High Street, 5th Floor Columbus, OH 43215 (614) 466-7290 (800) 755-4769 (GROW) [email protected] http://www.helpmegrow.ohio.gov /en/Referrals/Refer%20to%20Hel p%20Me%20Grow.aspx KIMBERLY HAUCK Assistant Deputy Director, Department of DD State Department of Developmental Disabilities 30 E. Broad Street Columbus, OH 43215 (614) 466-7290 (800) 755-4769 (GROW) [email protected] http://www.helpmegrow.ohio.gov /en/Referrals/Refer%20to%20Hel p%20Me%20Grow.aspx SOPHIA HUBBELL 619 Coordinator Office of Early Learning and School Readiness Ohio Department of Education 25 S. Front Street, Mail Stop 305 Columbus, OH 43215-4183 (614) 728-9435 [email protected] gov

Oklahoma MARK SHARP Part C Coordinator Special Education Office State Department of Education Oliver Hodge Memorial Education Building, 4th Floor 2500 North Lincoln Boulevard Oklahoma City, OK 73105-4599 (405) 521-4880 See regional phone numbers at the Referral Website [email protected] http://ok.gov/sde/staff-directory#SoonerStart MICHELLE PITCHFORD Early Childhood IDEA Project Director/619 Coordinator Special Education Services State Department of Education 2500 North Lincoln Boulevard Oklahoma City, OK 73105 (405) 522-4513 [email protected]

“ As a mom, when you know better, you do better.” -Holly Robinson Peete

keep momming. Being a Mom means being the one person my daughter Ryan can count on. It’s just what I do. But when I noticed she was daydreaming often, having a hard time focusing on her homework, and struggling to focus during conversations with her friends, I was at a loss. So we went to Ryan’s doctor, and he diagnosed her with AttentionDeficit/Hyperactivity Disorder (ADHD). Turns out there are 3 types of ADHD (Inattentive, Hyperactive/ Impulsive, and Combined) and Ryan has Inattentive ADHD. Since inattentive symptoms like hers may be less noticeable than hyperactive and impulsive symptoms, it’s important that moms like me know what to look for. I’m so glad we found out what was going on. Sound familiar? Get the ADHD Symptom Checklist, then talk with your daughter’s doctor.

keepmomming.com

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Early Intervention Programs

Oregon

South Carolina

NANCY JOHNSON-DORN Part C Coordinator Office of Special Education State Department of Education 255 Capitol Street NE Salem, OR 97310-0203 (503) 947-5703 (503) 947-5747 [email protected] http://www.ode.state.or.us/search /page/?id=1690

KRISTIE MUSICK Part C Coordinator South Carolina First Steps to School Success 1300 Sumter Street, Suite 100 Columbia, SC 29201-3340 (803) 734-8068 (877) 621-0865 [email protected] http://scfirststeps.org/babynet/ JENNY MAY 619 Coordinator Office of Special Education Services South Carolina State Department of Education Rutledge Building, Suite 800 1429 Senate Street Columbia, SC 29201 (803) 734-8154 [email protected]

Pennsylvania CARL BECK Part C Coordinator Bureau of Early Intervention Services Office of Child Development and Early Learning Department of Education and Department of Human Services 333 Market Street, 6th Floor Harrisburg, PA 17126 (717) 783-7213 (800) 692-7288 [email protected] http://www.portal.state.pa.us/port al/server.pt/community/early_inte rvention/8710

Puerto Rico ABRAHAM RIVERA-ALVARADO Part C Coordinator Puerto Rico Department of Health PO Box 70184 San Juan, PR 00936-8184 (787) 765-2929 ext 4557 [email protected] TIMOTHY GARCIA MALDONADO 619 Coordinator Department of Education PO Box 100759 San Juan, PR 00919-0759 (939) 642-6208 [email protected]

Palau HELEN SENGEBAU Special Education Director Ministry of Education Republic of Palau PO Box 189 Koror, Palau, PW 96940 (680) 488-2568 [email protected]

Rhode Island BRENDA DUHAMEL Part C Coordinator Executive Office of Health and Human Services Center for Child and Family Health 74 West Road, Building 74 Cranston, RI 02920 (401) 462-0318 [email protected] RUTH GALLUCCI Early Childhood Educational Specialist Office of Instruction, Assessment and Curriculum Department of Elementary and Secondary Education 255 Westminster Street Providence, RI 02903 (401) 222-8947 [email protected]

South Dakota SARAH CARTER Director and Part C Coordinator Birth to Three Connections State Department of Education 800 Governors Drive Pierre, SD 57501 (605) 773-4478 (800) 305-3064 [email protected] https://doe.sd.gov/oess/Birthto3_ icc.aspx WENDY TRUJILLO 619 Coordinator Office of Special Education Department of Education 800 Governors Drive Pierre, SD 57501 (605) 773-8071 [email protected]

Tennessee JOAN KENNEDY Part C Coordinator State Department of Education Andrew Johnson Tower, 7th Floor 710 James Robertson Parkway Nashville, TN 37243-0375 (615) 741-9873 (800) 852-7157 [email protected] http://www.tn.gov/education/earl y_learning/TEIS_eligibility.shtml GARY SMITH 619 Coordinator State Department of Education Office of Early Childhood Andrew Johnson Tower, 10th Floor 710 James Robertson Parkway Nashville, TN 37243 (615) 741-9871 [email protected]

Texas DANA MCGRATH Director of Policy and Support Texas Early Childhood Intervention Program Department of Assistive and Rehabilitative Services 6330 Highway 290 East Suite 300, MC 3029 Austin, TX 78723 (512) 424-6754 (800) 628-5115 [email protected] http://www.dars.state.tx.us/ecis/re ferral.shtml

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TERRIE BREEDEN 619 Coordinator Texas Education Agency 1701 North Congress Avenue Austin, TX 78701-1494 (512) 463-9414 [email protected]

Utah MEREDITH MANNEBACH Program Manager Baby Watch Early Intervention Bureau of Child Development 3760 South Highland Drive Salt Lake City, UT 84106 (801) 273-2890 (800) 961-4226 [email protected] http://www.utahbabywatch.org/fo rparents/childdevelop.htm BETSY SUTHERLAND 619 Coordinator Utah State Office of Education 250 East 500 South PO Box 144200 Salt Lake City, UT 84114 (801) 538-7948 [email protected]

Virginia CATHERINE HANCOCK Part C Coordinator Infant and Toddler Connection of VA Dept. of Behavioral Health and Developmental Services PO Box 1797 1220 Bank Street, 9th Floor Richmond, VA 23218-1797 (804) 663-7270 (800) 234-1448 [email protected] .gov http://www.infantva.org DAWN HENDRICKS 619 Coordinator Office of Special Education Instructional Services Virginia Department of Education James Monroe Building 101 N. 14th Street Richmond, VA 23219 804-225-2675 [email protected]

Virgin Islands NONA MCCRAY Acting Part C Coordinator Infant/Toddler Program Department of Health Elaineco Complex #78-1, 2, 3 St. Thomas, VI 00802 (340) 777-8804 (for St. Thomas) (340) 773-1311 ext 3124 (for St. Croix) [email protected] RENEE CHARLESWELL Director State Office of Special Education 1834 Kongens Gade St. Thomas, VI 00802 (340) 776-5802 x2244 [email protected]

Vermont

West Virginia

DANIELLE HOWES Part C Coordinator Children's Integrated Services Child Development Division 103 South Main Street DCF - 2 North Waterbury, VT 05671-2901 (802) 769-6174 See regional phone numbers at the Referral Website [email protected] http://dcf.vermont.gov/cdd/cis/co ntacts KATE ROGERS 619 Coordinator State Department of Education 120 State Street Montpelier, VT 05620-2501 (802) 479 1454 [email protected]

PAM ROUSH Part C Coordinator WV Birth to Three Office of Maternal and Child Health Department of Health and Human Resources 350 Capital Street, Room 427 Charleston, WV 25301 (304) 558-5388 (866) 321-4728 (in WV only) [email protected] http://www.wvdhhr.org/birth23/re ferral.asp GINGER HUFFMAN 619 Coordinator Office of Special Programs, Extended and Early Learning State Department of Education Capitol Complex, Building 6, Room 304 1900 Kanawha Boulevard East Charleston, WV 25305-0330 (304) 558-2696 [email protected]

Washington LAURIE THOMAS Part C Coordinator ESIT Administrator Department of Early Learning Early Support for Infants and Toddlers Program PO Box 40970 Olympia, WA 98504-0970 (360) 725-3500 (800) 322-2588 [email protected] http://del.wa.gov/publications/esi t/docs/ContactsDirectory.pdf VALERIE ARNOLD 619 Coordinator Office of the Superintendent for Public Instruction (OSPI) Special Education Department Old Capitol Building, 600 Washington Street S.E. PO Box 47200 Olympia, WA 98504-7200 (360) 725-6075 [email protected]

Wisconsin TERRI ENTERS Part C Coordinator Wisconsin Department of Health Services Bureau of Long-Term Support Division of Long Term Care PO Box 7851, Room 418 Madison, WI 53707-7851 (608) 267-3270 (800) 642-7837 (800) 282-1663 (TTY) [email protected] http://www.dhs.wisconsin.gov/chil dren/birthto3/family/referrals.htm JENNY GILES 619 Coordinator Education Consultant, Early Childhood State Department of Public Instruction 125 South Webster Street Madison, WI 53707-7841 (608) 267-9172 [email protected]

Wyoming CHRISTINE DEMERS Part C Coordinator Behavioral Health Division Wyoming Department of Health Suite 220 Qwest Building 6101 Yellowstone Road Cheyenne, WY 82002 (307) 777-5246 (877) WYO-Grow Regional phone numbers at the Referral Website [email protected] http://www.health.wyo.gov/ddd/e arlychildhood/preskool.html NICHOLAS WHYNOTT 619 Coordinator Behavioral Health Division 6101 Yellowstone Road, Suite 220 Cheyenne, WY 82009 [email protected] (307) 777-8762 DIANA CURRAH Special Programs Consultant Wyoming Department of Education 320 West Main Street Riverton, WY 82501 [email protected] (307) 777-7538 www.health.wyo.gov/ddd/earlychildhood/index.html

Federal & Federally Funded Information Resources

THE FEDERAL GOVERNMENT SUPPORTS MANY clearinghouses, information centers, and institutes that focus on specific topics. In addition to publishing and distributing extensive free material on disability-related subjects, many of the clearinghouses, centers, and institutes also provide referrals to local resources. For more information on federal and federally-funded information resources, contact: • NICHCY (National Information Center for Children and Youth with Disabilities), PO Box 1492, Washington, DC 20013-1492; (800) 695-0285 (V/TDD); (202) 884-8200 (V/TDD); (202) 884-8441 (FAX). • NARIC (National Rehabilitation Information Center), 1010 Wayne Ave., Ste. 800, Silver Spring, MD 20910; (800) 346-2742; (301) 562-2400; (301) 495-5626 (TDD); (301) 562-2401 (FAX). • NHIC (National Health Information Center), PO Box 1133, Washington, DC 200131133; (800) 336-4797; (301) 984-4256 (FAX). USING THIS DIRECTORY When available, Web sites and e-mail addresses have been included. Unless otherwise indicated, all telephone numbers are for voice only. This directory is current as of December 2016.

Accessibility

Arts

Disabilities

NATIONAL CENTER ON ACCESSIBILITY Linda Robertson Indiana University 501 North Morton St, Suite 109 Bloomington, IN 47404-3732 (812) 856-4422 (812) 856-4421 (812) 856-4480 [email protected] www.ncaonline.org 1,2,4,9 English THE U.S ACCESS BOARD Dave Yanchulis 1331 F Street, NW, Suite 1000 Washington, DC 20004-1111 (202) 272-0080 (202) 272-0081 (FAX) [email protected] www.access-board.gov 1,2,8

NATIONAL ARTS AND DISABILITY CENTER Beth Stoffmacher University of California, Los Angeles 760 Westwood Plaza 58-228 Semel Institute Los Angeles, CA 90095-1759 (310) 825-5054 (310) 794-1143 (FAX) [email protected] www.semel.ucla.edu/nadc 2,3,4,6,7,9 English

NATIONAL DISSEMINATION CENTER FOR CHILDREN WITH DISABILITIES Myriam Alizo, Project Assistant c/o Statewide Parent Advocacy Network 35 Halsey St., Fourth Floor Newark, NJ 07102 (800) 695-0285 (202) 884-8200 (202) 884-8441 (FAX) [email protected] nichcy.org 1,2,4 English, Spanish

AIDS CENTERS FOR DISEASE CONTROL (CDC) NATIONAL PREVENT Valerie Watkins PO Box 6003 Rockville, MD 20849-6003 (800) 232-4636 (888) 232-6348 [email protected] www.cdcnpin.org 2,4,9 English, Spanish CDC-INFO 1600 Clifton Road NE Atlanta, GA 30329-4027 (800) 232-4636 (888) 232-6348 www.cdc.gov 2 English, Spanish

Allergy & Infectious Diseases NATIONAL INSTITUTE OF ALLERGY & INFECTIOUS DISEASES Laurie Dopel NIAID Office of Communications and Government Relations 5601 Fishers Lane, MSC 9806 Bethesda, MD 20892-9806 (301) 496-5717 (866) 284-4107 (301) 402-3573 (FAX) [email protected] www.niaid.nih.gov 2,4,6,7,8,9 English, Spanish

Cancer NATIONAL CANCER INSTITUTE’S CANCER INFORMATION SERVICE Cancer Information Service BG 9609 MSC 9760 9609 Medical Center Drive Bethesda, MD 20892-9760 (800) 422-6237 [email protected] www.cancer.gov 2,4,8 English, Spanish DIABETES National Diabetes Information Clearinghouse (NDIC) 5 Information Way Bethesda, MD 20892-3560 (800) 860-8747 (866) 569-1162 (703) 738-4929 (FAX) [email protected] 2,4 English, Spanish and Asian Languages

Digestive Diseases NATIONAL DIGESTIVE DISEASES INFORMATION CLEARINGHOUSE 2 Information Way Bethesda, MD 20892-3570 (800) 891-5389 (301) 654-3810 (703) 738-4929 (FAX) [email protected] www.niddk.nih.gov 2,4,6 English, Spanish

72 January 2017 • EP MAGAZINE | eparent.com

Education FEDERAL RESOURCE CENTER FOR SPECIAL EDUCATION Michele Rovans Academy for Educational Development 1825 Connecticut Avenue NW Washington, DC 20009 (202) 884-8215 (202) 884-8443 (FAX) www.rrfcnetwork.org 2,3,4,6,7 English, Spanish THE UNIVERSITY OF MONTANA RURAL INSTITUTE FOR INCLUSIVE COMMUNITIES Marty Blair University of Montana Corbin Hall Missoula, MT 59812 (406) 243-4779 [email protected] http://ruralinstitute.umt.edu 2,3,4,7 English, accessible formats (NAEYC) NATIONAL ASSOCIATION FOR THE EDUCATION OF YOUNG CHILDREN Alan Simpson 1313 L Street, NW, Suite 500 . Washington, DC 20005 (800) 424-2460 (202) 232-8777 (202) 328-1846 (FAX) [email protected] www.naeyc.org 2,3,5,6,7,9 English

OFFICE OF SPECIAL EDUCATION & REHABILITATION SERVICES Carolyn Corlett US Department of Education, 400 Maryland Ave., S.W. Washington, DC 20202-7100 (202) 245-7468 (202) 245-7636 (FAX) 2,3,4,6,7,8,9 English

Employment JOB ACCOMMODATION NETWORK Gina Luci PO Box 6080 Morgantown, WV 26506-6080 (800) 526-7234 (877) 781-9403 (304) 293-5407 (FAX) www.jan.wvu.edu 1,2,4,6,8,9 English, Spanish OFFICE OF DISABILITY EMPLOYMENT POLICY - US DEPT. OF LABOR Carol Dunlap 200 Constitution Avenue NW Room S1303 U.S. Department of Labor Washington, DC 20210 (202) 693-7880 (202) 693-7888 (FAX) [email protected] www.dol.gov/odep 1,2,6 English, Spanish

Family Health AGENCY FOR HEALTH CARE RESEARCH AND QUALITY PUBLICATIONS CLEARINGHOUSE Giovanna Williams 5600 Fishers Lane, 7th Floor Rockville, MD 20857 (301) 427-1104 (703) 437-6922 (FAX) www.ahrq.gov 1,2,3,4,5,6,7,8,9 English, Spanish EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT (NICHD) PO Box 3006 Rockville, MD 20847 (800) 370-2943 (866) 760-5947 (FAX) NICHDInformationResourceCente [email protected] www.nichd.nih.gov 2,4,8, English, Spanish NATIONAL HEALTH INFORMATION CENTER (NHIC) 1101 Wootton Parkway Suite LL100 Rockville, MD 20852 (240) 453-8281 (FAX) [email protected] www.healthfinder.gov 2,4, English, Spanish HRSA INFORMATION CENTER 5600 Fishers Lane Rockville, MD 20857 (888) 275-4772 (877) 4TY-HRSA (703) 821-2098 (FAX) [email protected] www.ask.hrsa.gov 2,4 English, Spanish

HSC HEALTH CARE SYSTEM Ryan Easterly 2013 H Street NW Suite 300 Washington, DC 20006 (202) 454-1220 (202) 454-1251 (FAX) [email protected] www.hscfoundation.org 1,2 English, Spanish NATIONAL CENTER FOR HEALTH STATISTICS Media Center 3311 Toledo Road Hyattsville, MD 20782 (800) 232-4636 [email protected] www.cdc.gov/nchs 6 English NATIONAL INSTITUTES OF HEALTH (NIH) The Genetic and Rare Diseases Information Center PO Box 8126 Gaithersburg, MD 20898-8126 (888) 205-2311 (888) 205-3223 (301) 251-4911 (FAX) rarediseases.info.nih.gov/GARD 2,4, English, Spanish

Hearing Impairments DB-LINK (THE NATIONAL INFORMATION CLEARINGHOUSE ON CHILDREN WHO ARE DEAFBLIND) John Reiman 345 N Monmouth Ave Monmouth, OR 97361 (800) 438-9376 (800) 854-7013 (503) 838-8150 (FAX) [email protected] www.nationaldb.org 1,2,3,4 English, Spanish PUBLICATIONS AND INFORMATION DISSEMINATION Anita Gilbert 800 Florida Ave NE Washington, DC 20002 (202) 651-5855 (202) 250-2856 (202) 651-5857 (FAX) clerccenter.gallaudet.edu 1,2,4 American Sign Language NATIONAL INSTITUTE ON DEAFNESS & OTHER COMMUNICATION DISORDERS 1 Communication Avenue Bethesda, MD 20892-3456 (800) 241-1044 (800) 241-1055 (301) 770-8977 (FAX) [email protected] www.nidcd.nih.gov 1,2,8,9 English, Spanish

KEY TO SERVICES 1 2 3 4 5 6 7 8 9

Periodical/newsletter Informational materials Networking/matching Referrals to local resources Local chapters National conferences National advocacy efforts Fund research Maintain research registry

Heart, Lung, And Blood Disorders NATIONAL HEART, LUNG, & BLOOD INSTITUTE PO Box 30105 Bethesda, MD 20824-0105 (301) 592-8573 [email protected] www.nhlbi.nih.gov 1,2,8 English, Spanish

Housing HUD USER 451 7th Street S.W. Washington, DC 20410 (202) 708-1112 (202) 708-1455 (202) 708-9981 (FAX) [email protected] www.huduser.org 1,2,4,5,6,7,9 English

Kidney and Urologic Diseases NATIONAL KIDNEY & UROLOGIC DISEASES INFORMATION CLEARINGHOUSE 3 Information Way Bethesda, MD 20892-3580 (800) 891-5390 (866) 569-1162 (703) 738-4929 (FAX) [email protected] www.kidney.niddk.nih.gov 2,4 English, Spanish

Mental Health SAMHSA’S NATIONAL MENTAL HEALTH INFORMATION CENTER 1 Choke Cherry Road Rockville, MD 20857 (800) 662-4357 (800) 487-4889 (TDD) (240) 221-4295 (FAX) www.mentalhealth.samhsa.gov 2,4,6,7,8 English, Spanish PATHWAYS TO POSITIVE FUTURES RESEARCH AND TRAINING CENTER Janet Walker Regional Research Institute, Portland State Univer PO Box 751 Portland, OR 97207-0751 503-725-4040 503-725-4180 (FAX) [email protected] www.pathwaysrtc.pdx.edu 1,2,6 Spanish, alternative formats available upon request

Musculoskeletal & Skin Diseases NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES (NIAMS) 1 AMS Circle Bethesda, MD 20892-3675 (877) 22-NIAMS (877-226-4267) (301) 495-4484 (301) 718-6366 (FAX) [email protected] www.niams.nih.gov 1,2,4,8 English, Spanish

Neurological Disorders NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS & STROKE PO Box 5801 Bethesda, MD 20824 (800) 352-9424 (301) 496-5751 (301) 402-2186 (FAX) [email protected] www.ninds.nih.gov 2,4,6,8,9 English, Spanish

Oral Health NATIONAL INSTITUTE OF DENTAL AND CRANIOFACIAL RESEARCH National Oral Health Information Clearinghouse 1 NOHIC Way Bethesda, MD 20892-3500 (8660 232-4528 [email protected] www.nidcr.nih.gov 2,4,8 English, Spanish

Rehabilitation NARIC (NATIONAL REHABILITATION INFORMATION CENTER) 8400 Corporate Drive, Suite 500 Landover, MD 20785 (800) 346-2742 (301) 459-5900 (301) 459-4263 (FAX) [email protected] www.naric.com 1,2,4 English, ASL and Spanish

Transitioning TRANSITION RESEARCH INSTITUTE AT ILLINOIS (TRI) Betty Talyor 113 Children’s Research Center 51, Gerty Champaign, IL 61820 (217) 333-2325 (217) 244-7132 2(217) 244-0851 (FAX) [email protected] 1,4,7 English

Other Federal Resources These federal resources can provide information on programs, services and related laws and regulations. DEPARTMENT OF THE INTERIOR NATIONAL PARK SERVICE Frances Cherry 1849 C Street NW Washington, DC 20240 (202) 208-6843 (208) 387-5250 (FAX) [email protected] www.nps.gov 2,5,8 English NATIONAL LIBRARY SERVICES FOR THE BLIND AND PHYSICALLY HANDICAPPED 1291 Taylor Street NW Washington, DC 20542 (202) 707-5100 (202) 707-0712 (FAX) [email protected] www.loc.gov/nls 1,2,4 English OFFICE OF RARE DISEASES RESEARCH, NCATS, NIH Chris Griffin 6701 Democracy Boulevard Suite 1001, MSC 4874 Bethesda, MD 20892-7518 (301) 402-4336 (301) 480-9655 (FAX) [email protected] rarediseases.info.nih.gov 2,3,8 English, Spanish PRESIDENT'S COMMITTEE FOR PEOPLE WITH INTELLECTUAL DISABILITIES 370 L’Enfant Promenade S.W. Suite 210 Washington, DC 20447 (202) 619-0634 (800) 422-4453 (202) 205-9519 (FAX) [email protected] www.acf.hhs.gov/programs/pcpid 2,4,6,7,9 English, Spanish (in the future)

SOCIAL SECURITY ADMINISTRATION 1100 West High Rise 6401 Security Blvd Baltimore, MD 21235 (800) 772-1213 (800) 325-0778 www.socialsecurity.gov U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Letrina Holley 200 Independence Avenue, S.W. ˙ Washington, DC 20201 (202) 205-8037 (FAX) www.nidcr.nih.gov 1,2,7 English CENTER FOR DISEASE CONTROL AND PREVENTION 1600 Clifton Rd. Atlanta, GA 30329-4027 (800) CDC-INFO (888) 232-6348 www.cdc.gov English, Spanish NATIONAL COUNCIL ON DISABILITY Mark Quigley 1331 F St NW, Ste 850 Washington, DC 20004 (202) 272-2004 (202) 272-2074 (202) 272-2022 (FAX) [email protected] www.ncd.gov 1,2 English, Spanish, others

OFFICE FOR DISABILITY ISSUES HUMAN RESOURCES DEVELOPMENT, NATIONAL CLEARINGHOUSE, CANADA Peggy Abrahamson U.S. Department of Labor 200 Constitution Ave., NW, Washington, DC 20210 (866) 4US-ADOL (877) 488-95627 (819) 953-4797 (FAX) www.dol.gov/odep 2,4,6,8 English, Spanish

KEY TO SERVICES 1 2 3 4 5 6 7 8 9

Periodical/newsletter Informational materials Networking/matching Referrals to local resources Local chapters National conferences National advocacy efforts Fund research Maintain research registry

Visual Impairments NATIONAL EYE INSTITUTE Sherrita Walls 31 Center Drive MSC 2510 Bethesda, MD 20892-2510 (301) 496-5248 (301) 402-1065 (FAX) [email protected] www.nei.nih.gov 2,8,9 English, Spanish DB-LINK D. Jay Gense 345 N Monmouth Ave Monmouth, OR 97361 (503) 838.8754 (800) 438-9376 503-838-8150 (FAX) [email protected] www.nationaldb.org 1,2,3,4, English, Spanish

eparent.com | EP MAGAZINE • January 2017 73

State Offices of Special Education

THE NATIONAL ASSOCIATION OF STATE DIRECTORS OF SPECIAL EDUCATION (NASDSE) (www.nasdse.org) represents the state directors of special education in all 50 states, the District of Columbia, the Department of Defense Education Agency (DODEA), the federal territories and the Freely Associated States. NASDSE is a non-profit organization that was established in 1938 to promote and support education programs and related services for children and youth with disabilities in the United States and outlying areas. NASDSE accomplishes its goals by establishing and maintaining relations between those responsible for the development of statewide and federal special education programs and those responsible for general curriculum planning at the local, state and national levels. NASDSE activities are designed to provide professional support to its members and others interested in special education. NASDSE suggests parents contact the following people in the order listed if they are having a problem with their child’s education: (1) the child’s teacher; (2) the special education director in the school; and (3) the district’s special education coordinator. If the student has an Individualized Education Plan (IEP) that is not being enforced and the above individuals are not helpful, the parent can contact the state education agency where a complaint can be filed. The National Association of State Directors of Special Education 225 Reinekers Lane Suite 420 Alexandria, VA 22314 (703) 519-3800 (703) 519-3808 (FAX) http://www.nasdse.org Please note: This list of state directors is updated on an ongoing basis. To find the current name of your state director of special education, please visit NASDSE’s website at www.nasdse.org. Note that EP magazine received the following directory in this format, without phone and fax numbers or URLs. The listing is current as of December 2016.

Marshall Islands

North Dakota

Frank Horiuchi Republic of Marshall Islands PO Box 3179 Majuro, MH 96960

Gerry Teevens 600 E Boulevard Bismarck, ND 58505-0440

Maryland Marcella Franczkowski 200 West Baltimore Street 9th Floor Baltimore, MD 21201-2595

Massachusetts Marcia Mittnacht 75 Pleasant Street Malden, MA 02148-4906

Michigan Teri Chapman PO Box 30008 608 West Allegan Street Lansing, MI 48909-7508

Minnesota Robyn Widley 1500 Highway 36 West Roseville, MN 55113-4266

Mississippi Gretchen Cagle 359 North West Street Jackson, MS 39205-0771

Missouri Alabama

Connecticut

Idaho

Crystal Richardson Gordon Persons Building Room 3346 50 North Ripley St. Montgomery, AL 36104-3833

Isabelina Rodriguez PO Box 2219 3rd Floor, Rm 369 Hartford, CT 06145

Charlie Silva PO Box 83720 650 West State Street Boise, ID 83720-0027

Alaska Donald Enoch 801 W. Tenth Street, Suite 200 Juneau, AK 99801-1894

American Samoa Paulo Salave’a PO Box 7078 Pago Pago, AS 96799

Arizona Alissa Trollinger 3300 N.Central Ave, 24th Floor Phoenix, AZ 85007-3280

Delaware Mary Ann Mieczkowski 401 Federal Street, Suite 2 Dover, DE 19901

Department of Defense Education Agency David Johansen 4800 Mark Center Drive Alexandria, VA 22350

District of Columbia Amy Maisterra 810 1st Street, NE 5th Floor Washington, DC 20002

Arkansas

Federated States of Micronesia

Lisa Haley 1401 West Capitol, Suite 450 Little Rock, AR 72201-2936

Arthur Albert PO Box P Kolonia, Pohnpei, FSM 96941

Bureau of Indian Education

Florida

Gloria Yepa PO Box 829 1011 Indian School Road, NW Albuquerque, NM 87103-0829

Monica Verra-Tirado, Ed.D. 325 West Gaines St., Suite 601 Tallahassee, FL 32399-0400

California Chris Drouin 1430 N. Street, Suite 2401 Sacramento, CA 95814

Colorado Angela Denning 201 E. Colfax Avenue Denver, CO 80203

Georgia Deborah Gay 1870 Twin Towers East Atlanta, GA 30334-5054

Guam Yolanda Gabriel PO Box DE Hagatna, GU 96932

Hawaii Shari Dela Cuadra-Larsen PO Box 2360 Honolulu, HI 96804 74 January 2017 • EP MAGAZINE | eparent.com

Illinois David Andel 100 N. First Street, Mail Code N-243 Springfield, IL 62777-0001

Indiana Pam Wright State House Room 229 Indianapolis, IN 46204-2798

Iowa Barbara Guy Grimes State Office Building 400 E. 14th Street Des Moines, IA 50319-0146

Kansas Colleen Riley 900 SW Jackson Street Topeka, KS 66612

Kentucky Gretta Hylton 500 Mero Street CPT 19th Floor Frankfort, KY 40601

Louisiana Jamie Wong PO Box 94064 1201 North Third Street Baton Rouge, LA 70804-9064

Maine Janice E. Breton 23 State House Station Augusta, ME 04333

Stephen Barr PO Box 480 205 Jefferson Street Jefferson City, MO 65102-0480

Montana Frank Podobnik PO Box 202501 Helena, MT 59620-2501

Nebraska Gary Sherman 301 Centennial Mall South PO Box 94987 Lincoln, NE 68509-4987

Nevada Marva Cleven 700 E. Fifth Street Suite 113 Carson City, NV 89701-5096

New Hampshire Santina Thibedeau 101 Pleasant Street Concord, NH 03301

New Jersey John Worthington PO Box 500 Trenton, NJ 08625-0500

New Mexico Michael Lovato 300 Don Gaspar Avenue Santa Fe, NM 87501-2786

New York

Northern Mariana Islands Suzanne Lizama PO Box 1370 CK Saipan, MP 96950

Ohio Sue Zake 25 South Front Street Mail Stop 202 Columbus, OH 43215-4183

Oklahoma Todd Loftin 2500 North Lincoln Boulevard Oklahoma City, OK 73105-4599

Oregon Sarah Drinkwater 255 Capitol Street, NE Salem, OR 97301-0203

Palau Helen Sengebau PO Box 189 Koror, Palau, PW 96940

Pennsylvania Pat Hozella 333 Market Street, 7th Fl. Harrisburg, PA 17126-0333

Puerto Rico Carlos Rodriguez Apartado 190759 San Juan, PR 00919-0759

Rhode Island J. David Sienko 255 Westminster Street Providence, RI 02903

South Carolina John Payne Rutledge Building, Room 808 1429 Senate Street Columbia, SC 29201

South Dakota Linda Turner (800) Governor’s Drive Pierre, SD 57501-2294

Tennessee Allison Davey Andrew Johnson Tower, 5th Fl. 710 James Robertson Parkway Nashville, TN 37243-0380

Texas Gene Lenz W.B. Travis Building, Rm 6-127 1701 N Congress Avenue Austin, TX 78701-1494

U.S. Virgin Islands

Christopher Suriano One Commerce Plaza, Room 1606 Albany, NY 12234

Renee Charleswell PO Box 44-46 Kongens Gade Charlotte Amalie St. Thomas, USVI 00802

North Carolina

Utah

William J. Hussey 301 N. Wilmington St., 6th Fl. Raleigh, NC 27601-2825

Glenna Gallo 250 East 500 South PO Box 144200 Salt Lake, UT 84111-4200

Vermont

Washington

West Virginia

Wisconsin

Cindy Moran 219 North Main Street, Suite 402 Barre, VT 05641

Douglas Gill Old Capitol Building PO Box 47200 Olympia, WA 98504-0001

Pat Homberg Building 6, Room B-304, Capitol Complex 1900 Kanawha Boulevard Charleston, WV 25305

Barbara Van Haren PO Box 7841 Madison, WI 53707-7841

Virginia

Wyoming

John Eisenberg PO Box 2120 Richmond, VA 23216-2120

Anne-Marie Williams 320 West Main Riverton, WY 82501



Inclusion Works for Opportunity





Inclusion Works for Business

National Disability Employment Awareness Month

#InclusionWorks OFFICE OF DISABILITY EMPLOYMENT POLICY UNITED STATES DEPARTMENT OF LABOR

dol.gov/odep

Inclusion Works for Innovation

eparent.com | EP MAGAZINE • January 2017 75

Vocational Rehabilitation Programs

VOCATIONAL REHABIILTATION ASSISTS PEOPLE with disabilities in preparing for, beginning, and keeping employment. One of the oldest programs in which state funds are matched by federal funds, vocational rehabilitation began in 1920 with the passage of the Civilian Vocational Rehabilitation Act, which encouraged states to provide rehabilitation services to veterans with disabilities. Today, vocational rehabilitation programs operate under the Rehabilitation Act of 1973 and its subsequent amendments. The following is a listing of state vocational rehabilitation services. USING THIS DIRECTORY When available, Web sites and email addresses have been included. Unless otherwise indicated, all telephone numbers are for voice only. This directory is current as of December 2016.

Kansas

Massachusetts

KANSAS DEPARTMENT OF SOCIAL AND REHABILITATION SERVICES Docking State Office Building, 6th floor 915 SW Harrison Topeka, KS 66612-1570 (888) 369-4777 (785) 296-1491 (785) 296-2173 (FAX) www.srskansas.org

MA REHABILITATION COMMISSION Asst. Comm. Joan Phillips 600 Washington St. Boston, MA 02111 (800) 245-6543 (617) 204-3600 (617) 727-1354 (FAX) [email protected] www.mass.gov/mrc

Kentucky

Alabama

Colorado

Georgia

ALABAMA DEPARTMENT OF REHABILITATION SERVICES (ADRS) Susan Colburn Human Resources Department 602 S. Lawrence St. Montgomery, AL 36104 (334) 293-7500 (800) 441-7607 (334) 293-7383 (FAX) [email protected] www.rehab.state.al.us 1,2,4,5,6,7 English, Spanish

COLORADO DIVISION OF VOCATIONAL REHABILITATION Nancy Smith 1575 Sherman Street, 4th Floor Denver, CO 80203 (303) 866-4150 (866) 870-4595 (303) 866-4905 (FAX) [email protected] 2,4,5,6,7 English, Spanish

GEORGIA VOCATIONAL REHABILITATION PROGRAM Annette McCauley, 1700 Century Circle, Suite 300 Atlanta, GA 30345-3020 (404) 638-0385 (404) 486-6333 (404) 486-0217 (FAX) [email protected] www.vocrehabga.org 2,3,6,7 English, Braille, and Spanish

Alaska ALASKA VOCATIONAL TECHNICAL CENTER (AVTEC) Dick Harrell PO Box 889 809 2nd Ave. Seward, AK 99664 (907) 224-3322 (800) 478-5389 (907) 224-4400 (FAX) [email protected] www.avtec.edu 2,4 English

Arizona ARIZONA REHABILITATION SERVICES ADMINSTRATION Denise Olsen 1789 W. Jefferson, 2NW Phoenix, AZ 85007 (602) 542-3332 (800) 563-1221 (602) 542-3778 (FAX) [email protected] www.de.state.az.us/rsa/

Arkansas ARKANSAS REHABILITATION SERVICE 1616 Brookwood Dr. PO Box 3781 Little Rock, AR 72202 (501) 296-1669 (501) 296-1600 (501) 296-1675 (FAX) ace.arkansas.gov/Pages/default.a spx 1,2,4,5,6 English

California CALIFORNIA DEPARTMENT OF REHABILITATION 721 Capitol Mall Sacramento, CA 95814 (916) 324-1313 (800) 952-5544 (VOICE) (916) 558-5806 (FAX) [email protected] www.dor.ca.gov 2,4 English, Spanish

Connecticut DEPARTMENT OF SOCIAL SERVICES Dorian J. Long, M.S.W. Aging Services Division 25 Sigourney Street, 10th Floor Hartford, CT 06106 (860) 424-5274 (866) 218-6631 (860) 424-5301 (FAX) [email protected] www.ct.gov/dss/site/deflaut.asp 2,4,6,7 English, Spanish

Delaware DELAWARE DIVISION OF VOCATIONAL REHABILITATION Andrea Guest 4425 N. Market Street Wilmington, DE 19802 (302) 761-8275 www.delawareworks.com/DVR/we lcome.shtml

Florida FLORIDA VOCATIONAL REHABILITATION SERVICES Aleisa McKinlay, JD, MA 4070 Esplanade Way, 2nd Floor Tallahassee, FL 32399-7016 (850) 245-3399 (800) 451-4327 (850) 245-3382 (FAX) [email protected] www.rehabworks.org 1,2,3,4,5,6,7,8,9 English, Spanish, and Haitian-Creole

General CANADIAN SSOCIATION FOR COMMUNITY LIVING Tyler Hnatuk Centre for Social Innovation Suite 400, 215 Spadina Avenue Toronto, ON M5T 2C7 (4160 661-9611 (905) 436-3587 (FAX) [email protected] www.cacl.ca 1,2,3,4,5,6,7,8,9 English, French

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KENTUCKY OFFICE OF VOCATIONAL REHABILITATION Buddy Hoskinson Mail Stop 2E-K 275 East Main Street Frankfort, KY 40601 (502) 564-4440 (800) 372-7172 (502) 564-6745 (FAX) [email protected] ovr.ky.gov 2

Louisiana

Michigan MICHIGAN REHABILITATION SERVICES Rosanne Renauer 201 Townsend Street Lansing, MI 48913 (866) 540-0008 (855) 444-3911 (517) 335-0833 (FAX) www.michigan.gov/mrs 2,4,5,6,7 English, Spanish and Arabic

Minnesota DEPARTMENT OF EMPLOYMENT AND ECONOMIC DEVELOPMENT Paul Bridges 1st National Bank Building 332 Minnesota St., Suite E 200 St. Paul, MN 55101-1351 (651) 259-7112 (800) 657-3858 (651) 296-1290 (FAX) [email protected] us www.state.mn.us 2,5,8,9 English, Spanish

IDAHO DIVISION OF VOCATIONAL REHABILITATION PO Box 83720 650 West State Street, Room 150 Boise, ID 83702 (208) 334-3390 (208) 334-5305 (FAX) [email protected] www2.state.id.us/idvr

LOUISIANA REHABILITATION SERVICES Tamika 627 N. Fourth Street PO Box 91297 Baton Rouge, LA 70802 (888) 997-1117 (225) 219-4993 (225) 219-4993 (FAX) www.dss.state.la.us/index.cfm?md =pagebuilder&tmp=home&nid=1 2&pnid=0&pid=72&catid=0 2,3,4,6 English

Illinois

Maine

ILLINOIS DEPARTMENT OF HUMAN SERVICES Division of Rehabilition Services 100 S. Grand Ave East, 2nd Floor Springfield, IL 62794 (217) 782-2004 (217) 558-4270 (FAX) [email protected] www.dhs.state.il.us 2,4,5 English, Spanish

MAINE BUREAU OF REHABILITATION SERVICES Karen Fraser 54 State House Station Augusta, ME 04333 (800) 698-4440 [email protected] www.maine.gov/labor 2,4,7,9 English, Braille

MISSISSIPPI DEPARTMENT OF REHABILITATION SERVICES H.S. Mcmillan 1281 Highway 51 PO Box 1698 Jackson, MS 39215-1698 (800) 443-1000 (601) 853-5100 (601) 853-5758 (FAX) 2,3,4,6,7 English

Maryland

Missouri

WORKFORCE AND TECHNOLOGY CENTER 2301 Argonne Dr. Baltimore, MD 21218 (888) 554-0334 (410) 554-9442 (410) 554-9412 (FAX) www.dors.state.md.us

MISSOURI DIVISION OF VOCATIONAL REHABILITATION 3024 Dupont Circle Jefferson City, MO 65109 (573) 751-0881 TDD (573) 751-3251 (573) 751-1441 (FAX) [email protected] www.vr.dese.mo.gov 2,4

Idaho

Indiana INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION Gregory Jinks 402 W. Washington Street C-453 PO Box 7083 Indianapolis, IN 46207-7083 (317) 233-4454 (317) 232-6478 (FAX) www.fssa.state.in.us 1,2,3,4,6,7,8,9 English, Braille

Montana

Iowa IOWA DIVISION OF VOCATIONAL REHABILITATION SERVICE Steve Wooderson 510 E. 12th Street Des Moines, IA 50319-0240 (515) 281-4211 (800) 532-1486 (515) 281-7645 (FAX) 1,2,4,5,6,7 English, Sign Language, and Spanish

Mississippi

KEY TO SERVICES 1 2 3 4 5 6 7 8 9

Periodical/newsletter Informational materials Networking/matching Referrals to local resources Local chapters National conferences National advocacy efforts Fund research Maintain research registry

STATE OF MONTANA DEPARTMENT OF PUBLIC HEALTH & HUMAN SERVICES Anna Whiting Sorrell 111 Sanders, Rm. 301 PO Box 4210 Helena, MT 59604 406-444-5622 406-444-1970 (FAX)

Nebraska

New York

Pennsylvania

Utah

Wisconsin

NEBRASKA DEPARTMENT OF EDUCATION Roger Glawatz Vocational Rehabilitation PO Box 94987 Lincoln, NE 68509-4987 (402) 471-3644 (877) 637-3422 (402) 742-2371 (FAX) [email protected] www.vocrehab.state.ne.us/ 2 Whatever is needed

NEW YORK STATE EDUCATION DEPARTMENT NO CONTACT NAME 89 Washington Avenue Albany, NY 12234 (518) 474-3852 (518) 473-6073 (FAX) accesadm[email protected] www.vesid.nysed.gov/

PENNSYLVANIA DEPARTMENT OF LABOR AND INDUSTRY OFFICE OF VOCATIONAL REHABIITATION Nancy Smith 1521 N. 6th Street Harrisburg, PA 17102 (800) 442-6351 (7170 787-5244 www.dli.state.pa.us/landi/cwp/vie w.asp?a=128&Q=168255&dsftns =1375

UTAH STATE OFFICE OF REHABILITATION Aimee Langone 1595 West 500 South Salt Lake City, UT 84104 (801) 538-7591 (801) 538-7522 www.usor.utah.gov

WISCONSIN DIVISION OF VOCATIONAL REHABILITATION 201 E. Washington Ave. PO Box 7852 Madison, WI 53703 (608) 261-0050 (800) 442-3477 (608) 266-1133 [email protected] www.dwd.wisconsin.gov

Nevada STATE OF NEVADA DEPARTMENT OF EMPLOYMENT, TRAINING , AND REHABILITAITON 500 East Third Street Carson City, NV 89713 (800) 326-6868 (775) 687-5353 (775) 684-3850 (FAX) [email protected] www.nvdetr.org

New Hampshire NEW HAMPSHIRE DEPARTMENT OF EDUCATION 101 Pleasant Street Concord, NH 03301-3494 (603) 271-3494 (603) 271-1953 (FAX) [email protected] www.ed.state.nh.us

New Jersey BERGEN COMMUNITY COLLEGE - MOSAIC PROGRAM FOR DISABILITY EMPLOYMENT Neil Granstrand Bergen Community College _ Meadowlands Campus 1280 Wall Street West 3rd Floor Lyndhurst, NJ 07071-3517 (201) 447-7920 (201) 301-1255 (FAX) [email protected] mosaicdisabilityemployment.org 1,2,3,4 NEW JERSEY DIVISION OF VOCATIONAL REHABILITATION SERVICES Labor & Workforce Development PO Box 398 Trenton, NJ 08625 (609) 292.5987 (609) 292-2919 (609) 292-8347 (FAX) [email protected] http://nj.gov/nj/gov/deptserv/ 2,4,5,6,7 English, Spanish and American Sign Language

New Mexico DIVISION OF VOCATIONAL REHABILITATION Gary Beene Department of Education 435 St. Michaels Dr, Building D Santa Fe, NM 87505 (505) 954-8500 (800) 224-7005 (505) 954-8562 (FAX) [email protected] www.dvrgetsjobs.com 1,2,5,6,7 English, Spanish

North Carolina NORTH CAROLINA DIVISION OF VOCATIONAL REHABILITATION SERVICES Linda Harrington 2001 Mail Service Center Raleigh, NC 27699-2801 (919) 855-4800 (800) 689-9090 (919) 733-7968 (FAX) [email protected] www.dhhs.state.nc.us/docs/divinf o/dvr.htm 2,3,4,5,6,7,8,9 English, Spanish

North Dakota STATE VOCATIONAL REHABILITATION AGENCY Yvonne Smith Disability Services Division ND Department of Human Services 1237 W Divide, Suite 1B Bismarck, ND 58501-1208 (701) 328-8926 (800) 755-8529 (701) 328-8969 (FAX) www.nd.gov/dhs/services/disabilit ies/index.html 2,4,5,6,7,9 English

Ohio REHABILITATION SERVICES COMMISSION John Connelly 400 East Campus View Blvd. Columbus, OH 43235 (800) 282.4536 (614) 438-1200 (614) 438-1504 (FAX) www.rsc.ohio.gov/

Rhode Island RHODE ISLAND DEPARTMENT OF HUMAN SERVICES 40 Fountain Street Providence, RI 02903-1898 (401) 421-7005 (401) 421-7016 (401) 222-3574 (FAX) www.ors.ri.gov

South Carolina SOUTH CAROLINA VOCATIONAL REHABILITATION DEPARTMEN State Office Bldg. 1410 Boston Avenue. PO Box 15 West Columbia, SC 29171 (803) 896-6500 (800) 832-7526 (803) 896-6525 (FAX) www.scvrd.net

South Dakota SD REHABILITATION SERVICES Grady Kickul Hillsview Plaza, 3800 East Highway 34 c/o 500 East Capital Pierre, SD 57501 (605) 773-3438 (800) 265-9684 (605) 773-7562 (FAX) [email protected] dhs.sd.gov/drs/ 2,4,5,6,7 English, Braille

Tennessee

OKLAHOMA DEPARTMENT OF REHABILITATION SERVICES (DRS) Dana Tallon 3535 NW 58th Street, Suite 500 Oklahoma City, OK 73112 (800) 845-8476 (405) 951-3400 (405) 951-3529 (FAX) [email protected] www.okdrs.gov 2,3,4 English, Spanish, American Sign Language

TENNESSEE DEPARTMENT OF HUMAN SERVICES Mary Jane Ware Citizens Plaza State Office Building, 12th Floor 400 Deaderick Street Nashville, TN 37243-1403 (615) 313-5318 (615) 393-4979 (615) 741-6508 (FAX) [email protected] http://www.tn.gov/humanservices /topic/vocational-rehabilitation 2,3,4,5,6,7,9 English

Oregon

Texas

OREGON DEPARTMENT OF HUMAN SERVICES Stephaine Parrish Taylor 500 Summer St. NE Salem, OR 97301 (503) 945-5880 (866) 801-0130 (503) 378-2897 (FAX) [email protected] www.oregon.gov/DHS/vr/officelo cation.shtml 2,6,7 Any Language you want

DEPARTMENT OF ASSISTIVE REHABILITIVE SERVIES Jordan Gray 4800 N. Lamar Blvd. Austin, TX 78756 512-377-0800 512-424-4730 [email protected] www.dars.state.tx.us 2,3,4,7,8,9 English, Spanish and Sign Languages

Oklahoma

Vermont DIVISION OF VOCATIONAL REHABILITATION Weeks 1A, 103 South Main Street Waterbury, VT 05671-2303 (802) 241-2210 (866) 879-6757 (802) 241-3359 www.vocrehabvermont.org VERMONT DIVISION OF VOCATIONAL REHABILITATION Diane Dalmasse HC 2 South 280 State Drive Waterbury, VT 05671-2040 (866) VRWORKS (866) 879-6757 (802) 871-3048 [email protected] http://vocrehab.vermont.gov/ 2,3,4,6,7,8,9 English, Braille

Wyoming DEPARTMENT OF WORKFORCE SERVICES John Basse, 122 W 25th Street, # 2E Cheyenne, WY 82001 (307) 777-8728 (307) 777-5857 www.wyomingworkforce.org 2 English

Virginia DEPARTMENT FOR AGING AND REHABILITATIVE SERVICES Sherry P. Hailey 8004 Franklin Farms Drive Henrico, VA 23229 (804) 662-7000 (804) 662-7644 [email protected] www.vadrs.org 2,4 English, Spanish

Washington DEPARTMENT OF SOCIAL AND HEALTH SERVICES Kelly Boston PO Box 45130 Olympia, WA 98504-5130 (800) 737-0617 (800) 637-5627 (360) 438-8007 www1.dshs.wa.gov 2,3,4,5,6,7 English, Spanish, Vietnamese, Cambodian, Chinese, Korean and Russian

KEY TO SERVICES 1 2 3 4 5 6 7 8 9

Periodical/newsletter Informational materials Networking/matching Referrals to local resources Local chapters National conferences National advocacy efforts Fund research Maintain research registry

eparent.com | EP MAGAZINE • January 2017 77

Parent to Parent Programs

Parent to Parent USA Alliance Members provide parents of children with disabilities and special health care needs emotional and informational support. Their unique method of providing support through a carefully arranged, one-on-one match with a trained, Supporting Parent is proven to be effective. These reliable allies assist families in getting the support they need in their communities. USING THIS DIRECTORY This listing provided by Parent to Parent USA includes only those statewide Parent to Parent Organizations who have completed the P2PUSA 2014 Survey. If you are looking for a local program in a state that has a statewide program, please contact the statewide program for contact information. If there is not a statewide Parent to Parent program in your state and you are interested in establishing one, please contact Parent to Parent USA Executive Director, Kathy Brill, at [email protected] When available, email addresses and web sites have been included at Parent to Parent USA (www.p2pusa.org) under “Looking for Support”. The vision of Parent to Parent USA (P2PUSA) is for all families with children who have special health care needs, mental health challenges or disabilities to have access to the support they need to be successful. Parent to Parent USA’s mission is to promote access, quality and leadership in parent to parent support nationally through an alliance of statewide programs. This directory is current as of December 2016.

National

Colorado

Illinois

GRAHAM’S FOUNDATION (PREEMIES) Heather McKinnis 103 N. River Rd. Waterville, OH 43566 (888) 466-2948 [email protected] www.grahamsfoundation.org

PARENT TO PARENT OF COLORADO Lisa Franklin 801 Yosemite Street Denver, CO 80230 (877) 472-7201 [email protected] www.p2p-co.org

Alabama

Connecticut

HOPE INSTITUTE FOR CHILDREN AND FAMILIES Jennifer Lipscomb, Program Director 5220 S. 6th Street Road Suite 1700 Springfield, IL 62703 (217) 588-7528 [email protected] www.thehopeinstitute.us

FAMILY VOICES OF ALABAMA Susan Colburn/Gerald Oveson 1050 Government Street Mobile, AL 36604-2402 (877) 771-3862 [email protected] www.familyvoicesal.org

PARENT TO PARENT OF CONNECTICUT; PARENTS AVAILABLE TO HELP, INC. (PATH) Nanfi Lubogo and Carmina Cirioli PO Box 117 Northford, CT 06472 (800) 399-PATH (in Connecticut only) (203) 234-9554 (203) 234-1876 (FAX) [email protected] www.pathct.org

Arizona RAISING SPECIAL KIDS Joyce Millard-Hoie 5025 East Washington Street Suite 204 Phoenix, AZ 85034 (602) 242-4366 (800) 237-3007 (in Arizona) (602) 242-4306 (FAX) [email protected] www.raisingspecialkids.org

California PARENTS HELPING PARENTS, INC. Mary Ellen Peterson 1400 Parkmoor Avenue Suite 100 San Jose, CA 95126-3429 (408) 727-5775 (408) 286-1116 (FAX) [email protected] www.php.com PARENTS CAN Marlena Garcia 1909 Jefferson St Napa, CA 94559 (707) 253-7444 [email protected] www.parentscan.org

Delaware DELAWARE FAMILY VOICES, INC. Ann Phillips 61 Corporate Circle New Castle, DE 19720 (302) 221-5360 [email protected] http://defv.org

Georgia PARENT TO PARENT OF GEORGIA Debra Tucker 3070 Presidential Parkway Suite 130 Atlanta, GA 30340 (770) 451-5484 (770) 458-4091 (FAX) [email protected] www.p2pga.org

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Indiana ABOUT SPECIAL KIDS (ASK) Jane Scott 7172 Graham Rd Suite 100 Indianapolis, IN 46250 (317) 257-8683 (317) 251-7488 (FAX) [email protected] www.aboutspecialkids.org

Kansas

Maryland

Nebraska

SEEKING EQUALITY, EMPOWERMENT AND COMMUNITY (SEEC) Krista Middlebrooks 8905 Fairview Road Suite 300 Montgomery County, MD 20910 (240) 472-7363 [email protected] www.seeconline.org/families/par ent2parent

THE ARC OF OMAHA AT THE OLLIE WEBB CENTER 1941 S 42nd Street, Suite 122 Omaha, NE 68105 (402) 346-5220 ext 23 [email protected] www.olliewebbinc.org

Massachusetts FAMILY TIES OF MASSACHUSETTS Mary Castro Summers, Director Family TIES of Massachusetts Donovan Building Room 321 5 Randolph Street Canton, MA 02021 (781) 774-6736 (781) 774-6618 (FAX) [email protected] www.massfamilyties.org/parentto parent.html

Michigan FAMILY CENTER OF MICHIGAN Candi Bush, Director Lewis Cass Building, 6th Floor 320 South Walnut Street Lansing, MI 48893 (517) 241-7197 [email protected] www.michigan.gov PARENT TO PARENT OF SW MICHIGAN Jill Angell, Director 3901 Emerald Dr, Suite D Kalamazoo, MI 49001 (269) 245-8950 Fax (269) 345-5363 [email protected] www.p2pswmi.org

Minnesota

FAMILIES TOGETHER, INC. Leia Holley 501 SW Jackson, Suite 400 Topeka, KS 66603 (800) 264-6343 (785) 233-4777 (785) 233-4787 (FAX) [email protected] www.familiestogetherinc.org

FAMILY VOICES OF MINNESOTA Carolyn Allshouse 10460 Arcola Trail N. Stillwater, MN 55082 (612) 210-5547 [email protected] .org http://familyvoicesofminnesota.o rg

Kentucky

Missouri

KENTUCKY FAMILY TO FAMILY HEALTH INFORMATION CENTERS Debbie Gilbert and Sondra Gilbert (502) 429-4430 x 279 (800) 232-1160 x 279 (502) 429-7161 (FAX) [email protected] www.kyf2f.com

SHARING OUR STRENGTHS (SOS) SUPPORT MATCHING NETWORK Jennie Hatfield-Callen UMKC-Institute for Human Development, UCEDD 215 W. Pershing Road, 6th Floor Kansas City, MO 64108 (800) 444-0821 (816) 235-1763 (816) 235-1762 (FAX) [email protected] www.sharingourstrengths.com

Maine MAINE PARENT FEDERATION Janice LaChance PO Box 2067 Augusta, ME 04338 (800) 870-7746 (207) 623-2144 [email protected] www.mpf.org

Nevada FAMILY TIES OF NEVADA, INC. Melanie Kauffman, Executive Director 3100 Mill Street, Suite 117 Reno, NV 89502 (866) 326-8437 (TOLL FREE) (775) 823-9500 (775) 323-2205 [email protected] www.familytiesnv.org

New Hampshire NEW HAMPSHIRE FAMILY NETWORK Ashlee Fye 70 Pembroke Rd Concord, NH 03301 (603) 226-3212x241 (603) 225-0376 (FAX) [email protected]

New Jersey NEW JERSEY STATEWIDE PARENT TO PARENT Malia Corde c/o SPAN 35 Halsey Street, 4th Floor Newark, NJ 07102 (908) 537-4673 (973) 642-8080 (FAX) [email protected] www.spannj.org/familywrap/ parent2parent.htm

New Mexico PARENTS REACHING OUT Andrea Leon 1920 B Columbia Drive SE Albuquerque, NM 87106 (505) 247-0192 (505) 980-7588 (505) 247-1345 (FAX) [email protected] www.parentsreachingout.org

New York PARENT TO PARENT OF NYS Michele Juda, Executive Director PO Box 9212 Schenectady, NY 12304 (518) 381-4350 x 27 (800) 305-8817 [email protected] www.parenttoparentnys.org

North Carolina FAMILY SUPPORT NETWORK OF NC Tamara Norris, MSSW, MPA School of Social Work University of North Carolina CB#3550 Chapel Hill, NC 27599-3550 (800) 852-0042 (919) 966-2841 (919) 966-2916 (FAX) [email protected] www.fsnnc.org

North Dakota

Oregon

Texas

Washington

Netherlands

FAMILY VOICES OF NORTH DAKOTA Donene Feist (Director) and Moe Schroeder (P2P Program Coordinator) 312 2nd Avenue West Edgeley, ND 58433 (701) 493-2634 (888) 522-9654 (701) 493-2635 (FAX) [email protected] www.fvnd.org

FACT PARENT TO PARENT Roberta Dunn, Executive Director 13455 SE 97th Ave Clackamas, OR 97015-8662 (888) 988-FACT (3228) (503) 706-0744 503) 786-6084 (FAX) [email protected] www.factoregon.org/parent-toparent-mentoring/p2p-program

TEXAS PARENT TO PARENT Laura Warren 3710 Cedar Street Box 12 Austin, TX 78705 (512) 458-8600 (888) 896-6001 (512) 451-3110 (FAX) [email protected] www.txp2p.org

WASHINGTON STATE PARENT TO PARENT SUPPORT PROGRAMS Susan Atkins 2638 State Avenue NE Olympia, WA 98506 (800) 821-5927 (360) 357-3279 [email protected] www.arcwa.org/parent_to_parent .htm

PARENT2PARENT Johannes Verheijden P/a BOSK PO Box 3359 or Churchilllaan 11 8th floor 3527 GV Utrecht, Netherlands NL-3502 GJ +31 (0)30 245 90 90 31 (0)6 57 691 562 [email protected] www.parent2parent.nl

Pennsylvania

Vermont

Ohio GRAHAM’S FOUNDATION (PREEMIES) c/o Heather McKinnis 103 N. River Rd. Waterville, OH 43566 888-466-2948 [email protected] www.grahamsfoundation.org

PARENT TO PARENT OF PENNSYLVANIA Fiona Patrick Gateway Corporate Center 6340 Flank Drive Harrisburg, PA 17112 (717) 649-4861 (888) 727-2706 (in Pennsylvania) [email protected] www.parenttoparent.org

VERMONT FAMILY NETWORK Pam McCarthy 600 Blair Park Road Suite 240 Williston, VT 05495 (800) 800-4005 (802) 876-5315 (802) 876-6291 (FAX) [email protected] www.vermontfamilynetwork.org

Oklahoma

South Carolina

Virginia

OKLAHOMA FAMILY NETWORK, INC. Joni Bruce (Executive Director) and Heather Pike (Mentorship Director) PO Box 21072 Oklahoma City, OK 73156-1072 (877) 871-5072 (405) 271-5072 [email protected] www.oklahomafamilynetwork.org

FAMILY CONNECTION OF SOUTH CAROLINA Amy Nienhuis 1800 St. Julian Place Suite 104 Columbia, SC 29204 (803) 252-0914 (866) 420-4082 (FAX) [email protected] www.familyconnectionsc.org

PARENT TO PARENT OF VIRGINIA Dana Yarbrough PO Box 38341 Richmond, VA 23231 (804) 828-0352 (804) 828-0042 (FAX) [email protected] www.ptpofva.com

Wisconsin PARENT TO PARENT OF WISCONSIN Robin Mathea, Director Family Resource Connection 1020 Kabel Avenue Rhinelander, WI 54501 (888) 266-0028 (Toll Free) (715) 361-2934 (715) 361-2892 (FAX) [email protected] www.P2PWI.org

Americans with Disabilities Act Programs Disability Business Technical Assistance Centers The ADA National Network provides information, guidance and training on the Americans with Disabilities Act (ADA), tailored to meet the needs of business, government and individuals at local, regional and national levels. The ADA National Network consists of ten regional ADA Centers located throughout the United States that provide local assistance to ensure that the ADA is implemented wherever possible. The Centers are not enforcement or regulatory agencies, but a helpful resource supporting the ADA's mission to “make it possible for everyone with a disability to live a life of freedom and equality.” Search for comprehensive ADA information, services, products, training and guidelines, or visit your regional ADA Center website for local events and support. Contact your regional ADA Center toll-free at: (800) 949-4232 (voice/TTY). Or contact your center through the web at www.adata.org. The Network is funded by the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living, and Rehabilitation Research. This directory is current as of May 2016.

Region 1 (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont) NEW ENGLAND ADA CENTER Institute for Human Centered Design 180-200 Portland Street, Suite 1 Boston, MA 02114 (617) 695-1225 (Voice/TTY/ Español/Português) [email protected] www.newenglandada.org

Region 2 (New Jersey, New York, Puerto Rico, U.S. Virgin Islands) Northeast ADA Center 201 Dolgen Hall Ithaca, NY 14853 (607) 255-6686 [email protected] www.northeastada.org

Region 3 (Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia) Mid-Atlantic ADA Center 401 North Washington Street, Suite 450 Rockville, MD 20805 (301) 217-0124 [email protected] www.adainfo.org

Region 4 (Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee) Southeast ADA Center 1419 Mayson Street Atlanta, GA 30324 (404) 541-9001 [email protected] www.adasoutheast.org

Region 5 (Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin) Great Lakes ADA Center University of Illinois at Chicago Institute on Disability & Human Development (MC 728) 1640 West Roosevelt Road, Room 405 Chicago, IL 60608 (312) 413-1407 V/TTY [email protected] www.adagreatlakes.org

Region 6 (Arkansas, Louisiana, New Mexico, Oklahoma, Texas) Southwest ADA Center at ILRU TIRR Memorial Hermann Research Center 1333 Moursund St. Houston, TX 77030 (713) 520-0232 [email protected] www.southwestada.org

Region 7 (Iowa, Kansas, Missouri, Nebraska) Great Plains ADA Center 100 Corporate Lake Drive Columbia, MO 65203 (573) 882-3600 (V/TTY) [email protected] www.gpadacenter.org

Region 8 (Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming) Rocky Mountain ADA Center 3630 Sinton Road, Suite 103 Colorado Springs, CO 80907 (719) 444-0268 [email protected] www.adainformation.org

Region 9 (Arizona, California, Hawaii, Nevada, the Pacific Basin) Pacific ADA Center 555 12th Street, Suite 1030 Oakland, CA 94607-4046 (510) 285-5600 (V/TTY) [email protected] www.adapacific.org

Region 10 (Alaska, Idaho, Oregon, Washington) Northwest ADA Center University of Washington 6912 220th Street SW #105 Mountlake Terrace, WA 98043 (425) 248-2480 [email protected] www.nwadacenter.org

eparent.com | EP MAGAZINE • January 2017 79

Title V Programs

The Title V Maternal and Child Heath (MCH) Block Grant is a partnership with state and territorial MCH and children and youth with special health care needs (CYSHCN) programs, reaching across economic lines to support such core public health functions as resource development, capacity and systems building, population-based functions such as public information and education, knowledge development, outreach and program linkage, technical assistance to communities, and provider training. State and territorial MCH programs make a special effort to build community capacity to deliver such enabling services as care coordination, transportation, home visiting, and nutrition counseling, which complement and help ensure the success of state Medicaid and CHIP medical assistance programs.This directory is current as of September 2016.

North Carolina

Vermont

NC FAMILY HEALTH RESOURCE LINE (800) FOR-BABY

HELP YOUR BABY HELP YOURSELF (800) 649-HELP

North Dakota

Virgin Islands

CHS-EAST TOLL-FREE (800) 472-2286

MCH & CSHCN INFORMATION DESK (866) 248-4004

Northern Mariana Islands SOUTHERN COMMUNITY WELLNESS CENTER (670) 664-4850

Alabama

Guam

Massachusetts

HEALTHY BEGINNINGS (800) 654-1385

MCH PROGRAM (671) 735-7111/128

COMMUNITY SUPPORT LINE (800) 882-1435

Alaska

Hawaii

Michigan

WOMEN’S, CHILDREN’S AND FAMILY HEALTH/DIV. OF PUBLIC HEALTH (800) 799-7570

HIKISS (800) 235-5477

MDCH (800) 26-BIRTH (800) 262-4784

American Samoa

IDAHO CARELINE 211 or (800) 296-2588

TINA & TAMAITI (684) 633-4616

Arizona CHILDREN’S INFORMATION CENTER (800) 232-1676

Arkansas AR RESOURCE AND HEALTH INFORMATION ((800) 462-0599

California MCAH Toll Free Information Line (866) 241-0395

Colorado FAMILY HEALTHLINE (800) 688-7777

Connecticut MCH INFORMATION & REFERAL SERVICES 800) 688-7777

Delaware

Idaho

llinois

Oregon

INDIANA FAMILY HELPLINE (800) 433-0746

TEL-LINK (800) 835-5465

Iowa

Montana

IOWA HEALTHY FAMILIES LINE (800) 369-3826

FAMILY HEALTH LINE (887) 543-7669

Kansas

Nebraska

MAKE A DIFFERENCE INFORMATION NETWORK (MADIN) (800)-332-6262

NEBRASKA HEALTHY MOTHERS, HEALTHY BABIES HOTLINE (800) 862-1889

Kentucky

Nevada

MATERNAL AND CHILD HEALTH INFORMATION TOLL FREE LINE (800) 462-6122

MCH CAMPAIGN/ NEVADA 211 (800) 429-2669 & 211

Louisiana

DHHS TOLL-FREE INFORMATION LINE (800) 852-3345

Marshall Islands HELLEN JETNIL-DAVID 9-011-692-625-3355

Maryland MCH HOTLINE (800) 456-8900

80 January 2017 • EP MAGAZINE | eparent.com

HEALTHY BABY (HB) HEALTHY KIDS (HK) (800) 986-2229

Puerto Rico OITA (800) 981-5721

Rhode Island RHODE ISLAND DEPARTMENT OF HEALTH INFORMATION LINE (800) 942-7434

South Carolina THE CARELINE (800) 868-0404

South Dakota BRIGHT START (800) 305-3064

Tennessee

New Jersey

TN BABY LINE (800) 428-2229

FAMILY HEALTH LINE (800) 328-3838

Texas

NURSEADVICE NM (877) 725-2552

211 TEXAS INFORMATION AND REFERRAL NETWORK 2-1-1 (Texas Only) or call (512) 458-7111

New York

Utah

THE GROWING UP HEALTHY HOTLINE (800) 522-5006

BABY YOUR BABY (800) 826-9662

New Mexico

West Virginia MCFH SYSTEMS POINT OF ENTRY (800) 642-8522

WISCONSIN MATERNAL AND CHILD HEALTH HOTLINE (800) 722-2295

Missouri

MCH INFORMATION LINE (800) 698-3624

FAMILY HEALTH HOTLINE (800) 322-2588

Palau

Indiana

DISTRICT OF COLUMBIA’S UNIFIED CALL CENTER (311) (800) MOM BABY or 311

Washington

Wisconsin

Pennsylvania

New Hampshire

VIRGINA STATEWIDE HUMAN SERVICES I&R SYSTEM (211) (800) 230-6977 or 211

211 INFO (SAFENET) (800) SAFENET

TAKE CARE (800) 721-7222

Maine

POWERLINE (800) 822-2539

OASIS (800) 426-2747

FAMILY HEALTH CLINIC HOTLINE (680) 488-1756

District of Columbia

Georgia

Oklahoma

Mississippi

PARTNERS FOR HEALTHY BABIES (800) 251-BABY (251-2229)

FAMILY HEALTH LINE (800) 451-2229

INFORMATION AND REFERRAL LINE (800) 728-5420

HELP ME GROW (800)755-4769

IL DHS CUSTOMER & PROVIDER ASSISTANCE HELPLINE (800) 843-6154

HELPLINE (800) 464-4357

Florida

Minnesota

Ohio

Virginia

Wyoming MATERNAL AND FAMILY HEALTH (800) 438-5795

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Military

IT’S TIME FOR THAT NEW ASSIGNMENT. Because you have an exceptional family member, your family has been screened by the Exceptional Family Member Program (EFMP) and the screening has indicated that care is available for your family at your new duty station. Orders are being published. What do you do now? You know one of the best sources of information about services for your family with special needs is the Exceptional Family Member Program manager at your new installation. You want to contact the Army Community Service and their EFMP manager. But, who is it? Exceptional Parent magazine has published a list of EFMP managers throughout the U.S. Army since the introduction of its military section in the EP 2007 Annual Resource Guide. This comprehensive list in the Resource Guide has helped Soldiers and spouses find the services they need to take better care of their families. Most of the time, the help is only a telephone call or letter away. Soldiers are sometimes assigned to an installation managed by another service. Who provides the assistance there? In 2008, EP expanded its coverage of Exceptional Family Member Program managers to include the managers of the Navy, Marine Corps, and Coast Guard. In the future, EP will continue to expand its coverage even further as more information becomes available. This military listing is important to all members of our uniformed Armed Forces because it provides the most current and accurate information available. It is particularly important to families. We know some families move away from their home installations during deployments and want to know where care is available. Sometimes care is available at the Coast

Guard Station down the road, the Marine Corps camp across town, or the Navy base in the city next door. Last year, the listing for the Army’s School Liaison Officers (SLOs) was added. We believe that School Liaison Officers serve the military family by providing a vital link between families of the installation and the local school district. SLOs can help parents overcome the obstacles to education that are a result of the military lifestyle and can serve as advocates for children with special needs. Southwest Asia has brought new challenges to Wounded Warriors as they begin the transition from the military healthcare system to the Department of Veterans Affairs healthcare system. We added the VA medical centers and clinics in 2008 to ease that transition by providing the telephone numbers and addresses of the VA facility closest to home. We hope you take a copy of the Resource Guide with you as you travel from installation to installation or travel during that magic recovery time after a deployment. Ask your EFMP manager for a copy of the Pocket Resource Guide, too. It contains the same information as the full-size edition of the Resource Guide, with extra portability. The Pocket Resource Guide fits well in a suitcase or briefcase, and it always fits in your vehicle. Today and tomorrow, EP will continue to provide the opportunity for families to reach out to each other, share ideas and experiences, and break down the barriers brought on by the physical and emotional strains of caring for family members with special needs. All the listings are current from our military sources as of December 2016. If you find an error in any of our listings, please contact our military editor at [email protected] Good luck on your new assignment!

Exceptional Family Member Program Managers United States Army

We believe we have listed all the installations in the United States Army. The listing is correct to the best of our knowledge as of December 2016. We attempted to contact all of the installations in the United States and used the information provided by the Installation Management Command (IMCOM) for the installations overseas. For corrections or updates, please contact our military editor, at [email protected] CONUS This installation listing contains all of the Exceptional Family Member Program (EFMP) offices in the United States, including Alaska and Hawaii. The offices are arranged alphabetically by state and then by installation. Overseas EFMP offices (excluding Alaska and Hawaii) are arranged by region and then by installation. Updated Listings For the most up-to-date listings of EFMP offices and contacts, please refer to the helpful “LOCATE” section on the following Military OneSource web page: www.militaryonesource.mil/family-and-relationships/special-needs?content_id=282359

Aberdeen Proving Ground, MD

Devens Reserve Forces Training Area, MA

Fort Bliss, TX

Nancy Goucher (410) 278-2420

Fisher Imelda (978) 796-3023

Colleen Nutter (915) 568-3052 [email protected]

Anniston Army Depot, AL

Dugway Proving Ground, UT

Fort Bragg, NC

Timothy Rolfe (256) 235-7971 [email protected]

Gregory Mason (435) 831-2834 [email protected]

Trisha Newton (910) 907-3395 [email protected]

Carlisle Barracks, PA

EUROPE REGION

Fort Buchanan, PR

Kelly Villalobos (717) 245-3775

Pamela Koch (49) 6111-43544-9253 [email protected]

Raymond Morales (787) 707-3295 [email protected]

CSTC, Fort Hunter Liggett, CA

Fort Belvoir, VA

Fort Campbell, KY

Rita Goldstein (831) 386-2378 [email protected]

Tammye Braddy (703) 805-3436 [email protected]

Felicia Jefferson (270) 956-3738 [email protected]

Detroit Arsenal, MI

Fort Benning, GA

Fort Carson, CO

Cecelia McPherson (586) 282-0475 [email protected]

Marla Harris (706) 545-5521 [email protected]

Susan Moyer 719-526-4590 [email protected]

Fort Detrick, MD

Fort Leavenworth, KS

Michelle Hewitt (301) 619-3385 [email protected]

Burford Jennifer (913) 684-2871 [email protected]

Fort Drum, NY

Fort Lee, VA

Sharon Chaple (315) 772-5476 [email protected]

Judy Eoff (804) 734-6393 [email protected]

Fort Gordon, GA

Fort Leonardwood, MO

Pamela Rachal (706) 791-4872 [email protected]

Cinda Holloway (573) 596-2784 [email protected]

Fort Greely, AK

Fort McCoy, WI

VACANT Mirian Houston (acting) (907) 873.4385 [email protected]

Terrence Rogalla (608) 388-2412/3505 [email protected]

Fort Hamilton, NY

Fort Meade, MD

Carmen Borrero (ACS Director) (718) 630-4457 [email protected]

Anita Hendrix (301) 677-5590 [email protected]

Fort Hood, TX

Fort Polk, LA

Joan Boykin (254) 286-6584 [email protected]

Victoria Scott (337) 531-2840 [email protected]

Fort Huachuca, AZ

Fort Riley, KS

Audrey Peterson-Hosto (520) 533-6871 [email protected]

Laura McCauley (785) 239-9435 [email protected]

Fort Jackson, SC Cheryl Jackson-Leysath 803 751 5256 [email protected]

Fort Knox, KY Stacy Haynes (502) 624-4067 [email protected]

Fort Rucker, AL Marion Cornish (334) 255-9277 [email protected]

Fort Sam Houston, TX Sharon G. Swisher 210-466-1147 [email protected]

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Military

Fort Sill, OK April Plumley (580) 442-7617 [email protected]

Fort Stewart, GA Victor Garcia (912) 767-0259 [email protected]

Ft Wainwright, AK D‘Letter Shumate (907) 353-4243 [email protected]

IMCOM ATLANTIC REGION/Garrison Support Sandee Ray (210 ) 66-1215 [email protected]

IMCOM CENTRAL REGION/Garrison Support Gerry Williamson (210) 466-1309 [email protected]

IMCOM PACIFIC REGION Nancy Piper (808) 438-5492 [email protected]

Joint Base ElmendorfRichardson, AK Kerry (Blayne) White (907) 384-0225 [email protected]

Joint Base Langley-Eustis, VA Marlene Foster Cherrye (757) 878-1954 [email protected]

Joint Base Lewis-McChord, WA Mary Herrera (253) 967-9704 [email protected]

Joint Base Little CreekStory NAVY LEAD

Joint Base Myer-Henderson Hall, VA

(49) 8821-750-3572 [email protected]

USAG Red Cloud/Camp Casey, Korea

USAG Yongsan, South Korea

Laurie Brown (ACS Director) (703) 696-3435 [email protected]

USAG BavariaGrafenwoehr, Germany

Charles Lyons (011) 8231-869-3107 [email protected]

Pamela Smith (011) 822-7918-5311 [email protected]

USAG Rheinland-PfalzKaiserslautern, Germany

West Point, NY

Joint Base San Antonio, TX Heejung Sackett (210) 221-0497 [email protected]

NTC/Ft. Irwin, CA Evelyn Villalobos (760) 380-3698 [email protected] l.mil

Madelene Celestine (49) 9662-832650 [email protected]

USAG Bavaria- Hohenfels, Germany Terry Giles (49) 9472-83-4908 [email protected]

USAG Benelux- Brussels, Belgium

Marci Keck 973-724-2145

Danielle Hanson (32) 65-44-7461 [email protected]

Presidio of Monterey, CA

USAG Daegu, Korea

Picatinny Arsenal, NJ

Dianne Pierre (49) 631-3406-4094 [email protected]

USAG Rheinland-PfalzBaumholder, Germany April Railey (49) 678368184/ 678368188 [email protected]

USAG Schweinfurt, Germany Tony Pryor (49) 9721-96-7077/6933 [email protected]

Linda Moseley (831) 242-7960 [email protected]

VACANT Judith Stewart (011) 82-53-470-8329

Redstone Arsenal, AL

VACANT Judith Stewart (011) 82-53-470-8329

Marisa Willis (49) 7031-15-3362 [email protected]

USAG Hawaii-Schofield Barrack, HI

USAG Torri Station, Okinawa

Natalie Taylor (256) 876-5397 [email protected]

Rock Island Arsenal, IL Jan Saito (309) 782-4736 [email protected]

Tobyhanna Linda Kerr (ACS Director) (570) 615-6682 [email protected]

USAG Daegu, Korea

Leonard Webster (808) 655-4777 [email protected]

USAG Humphreys, Korea Insil Leo (011) 8231-690-6277 [email protected]

USAG Ansbach, Germany

USAG Japan-Camp Zama, Japan

Beth Ellis (49) 9802-83-3632 [email protected]

Cheryl Rendon (011) 81-46-407-4572 [email protected]

USAG Bamberg, Germany

USAG-Natick Garrison

Robert Mueller (49) 951-300-7594 [email protected]

Jaylynn Richard 508-233-5377 [email protected]

USAG Bavaria- Garmisch, Germany

USAG Miami, FL

Kari Sharpe

84 January 2017 • EP MAGAZINE | eparent.com

Joe Walker (305) 437-2734 [email protected]

USAG Stuttgart, Germany

Stan Austin (Acting) (011) 81-611-744-4385 [email protected]

USAG Vicenza- Darby Army Community, Italy Evelyn Watkins (39) 50-54-7584 [email protected]

USAG Vicenza, Italy Leigh Ann Strain (39) 0444-71-8582 [email protected]

USAG Wiesbaden, Germany Ann Cooper [email protected]

Josephine Toohey (845) 938-5655 [email protected]

White Sands Missile Range, NM Anna Maria Vestal [email protected]

Yuma Proving Ground, AZ Paul Kilanski (928) 328-3224 [email protected]

Military

United States Marine Corps

This listing for the United States Marine Corps is correct to the best of our knowledge, as of December 2016. We used the information provided by the Headquarters U.S. Marine Corps Exceptional Family Member Program (EFMP) Website (www.usmcmccs.org/efmp). For corrections or updates, please contact your local Exceptional Family Member Program (EFMP) manager. The USMC describes its program to assist with special needs in the following way (at www.usmc-mccs.org/efmp/ and www.usmc-mccs.org/efmp/familysupport.cfm): The content of the Headquarters U.S. Marine Corps EFMP (Exceptional Family Member Program) Website has been developed in detail to assist Marines, their family members, Commands, EFMP Coordinators, and other professionals who have an interest in becoming more knowledgeable about the Exceptional Family Member Program and other resources and information that can be helpful to families with special medical or educational needs. You are invited to browse through the website to find information that will be of benefit to you, your family, your program, or your Marines. The Marine Corps recognizes and is particularly responsive to the needs of Marines, both Active Duty and Marine Corps Reservists, who have family members with special medical and/or education needs. Early enrollment in the EFMP is the Marine’s guarantee that the Marine Corps will do its best to match a Marine’s grade and occupational specialty with a location where the exceptional family member’s needs can be met. There are also other services that the EFMP offers that are designed to improve the quality of life for Marine Corps families with special needs. If there are changes or corrections, please contact our military editor of EP magazine at [email protected] The EFMP Program Managers in the listing below are arranged alphabetically by installation name.

Albany, GA EFMP PROGRAM MANAGER JAMES CAREY SNIPES (229) 639-5277 [email protected]

Barstow, CA EFMP PROGRAM MANAGER DEBORAH MCGOUGH (760) 577-6533 [email protected]

Beaufort/Parris Island MCRD EFMP PROGRAM MANAGER JOHN ABNEY (843) 228-3188 [email protected]

Camp Lejeune EFMP PROGRAM MANAGER MARIA READY (910) 451-9372 [email protected]

Camp Pendleton EFMP PROGRAM MANAGER CARLTON SAULS (760) 725-1966 [email protected]

Cherry Point EFMP PROGRAM MANAGER JOHN ROBERTS (252) 466-7547 [email protected]

Hawaii

Miramar

EFMP PROGRAM MANAGER ROBERTO KATEKARU (808) 257-7773 [email protected]

EFMP PROGRAM MANAGER DEMETRA ANDERSON (858) 577-8644 [email protected]

Henderson Hall

New River

EFMP PROGRAM MANAGER CAROL LAVOY (703) 693-6368 [email protected]

EFMP PROGRAM MANAGER VICTORIA FINNELL (910) 449-5248 [email protected]

Iwakuni Japan

Quantico

EFMP PROGRAM MANAGER JOY CALVIN (011) 81-827-79-5601 [email protected]

EFMP PROGRAM MANAGER MONIQUE O’NEIL (571) 931-0525 o’[email protected]

Kansas City

Twentynine Palms

EFMP PROGRAM MANAGER DIANE SKOWRONSKI (816) 843-3659 [email protected]

EFMP PROGRAM MANAGER TITUS BURNS (760) 830-8789 [email protected]

Marforres

Yuma

EFMP PROGRAM MANAGER SANDY ROBINSON (504) 678-8248 [email protected]

EFMP PROGRAM MANAGER MARGY PRACCHIA (928) 269-2425 [email protected]

MCRD San Diego EFMP PROGRAM MANAGER JANICE KING (619) 524-6078 [email protected]

eparent.com | EP MAGAZINE • January 2017 85

Military

United States Navy

This listing for the United States Navy is correct to the best of our knowledge as of July 2014. For corrections or updates, contact your Exceptional Family Member Program (EFMP) manager and ask that the information be reported to the Department of the Navy EFMP Program Manager. The Navy describes its program to assist with special needs in the following way (at www.npc.navy.mil/CommandSupport/ExceptionalFamilyMember/): The Navy’s Exceptional Family Member Program (EFMP) is designed to assist sailors by addressing the special needs of their exceptional family members (EFM) during the assignment process. Special needs include any special medical, dental, mental health, developmental or educational requirement, wheelchair accessibility, adaptive equipment or assistive technology devices and services. In the Navy EFM Program, the primary function is the PERSONNEL FUNCTION. The Navy EFMP Coordinators are located at the medical treatment facility, not at the Fleet and Family Support Centers (all Fleet and Family Support Centers have an EFMP liaison). The Navy EFMP Coordinators serve both Personnel and Family Support functions, but with an emphasis on the Personnel function. The offices in the listing below are arranged alphabetically by state and then alphabetically by city. Overseas offices are arranged by country and then by installation.

Arizona MCAS Officer in Charge Box 99116 Yuma, AZ 85369-9116 (928) 269-6444

California BRMEDCLINIC NAVSTA Officer in Charge 2450 Craven Street Box 368153 San Diego, CA 92136-5599 (619) 856-9474/8069 526-8069 (DSN) NAVAL AMBULATORY CARE CENTER Commanding Officer 162 First Street, Bldg 1402" Port Hueneme, CA 93043 (805) 982-6152/6300 (551) 6152/6300 (DSN) NMCSD BRMEDCLINIC NTC Building 624 2650 Stockton Road San Diego, CA 92106-6000 1-619-524-0993 MONTEREY, CA Naval Medical Administrative Unit Officer in Charge 473 Cabrillo Street, Suite A1A Monterey, CA 93944-3208 (831) 242-5614 768-5614 (DSN) NAVAL HOSPITAL 937 Franklin Avenue Lemoore, CA 93246 (559) 998-4226 949-4226 (DSN) NAVAL AIR FACILITY BUILDING Director Building 523, NAF El Centro El Centro, CA 92243 (760) 339-2630 658-2630 (DSN) NAVAL BRANCH HEALTH CLINIC (MCRD) Officer in Charge 35000 Guadalcanal St., Bldg 596 San Diego, CA 92140-5599 (619-532-5095 NAVAL MEDICAL CENTER Commanding Officer 34800 Bob Wilson Drive San Diego, CA 92134 619-532-6400 522-6400 (DSN)

BMC KEY WEST, FL Officer in Charge 1300 Douglas Circle Key West, FL 33040-4594 (305) 293-4842 483-4886 (DSN) MAC DILL AIR FORCE BASE Commanding Officer ATTN EFMP 8415 Bayshore Blvd Tampa, FL 33621 1-813-827-9170/1/2/3 NBHC MILTON, FL Commanding Officer 7119 Langley Avenue, Suite 101 Milton, FL 32570 (850) 623-7508, 868-7508, (DSN) NAVHOSP PENSACOLA, FL Commanding Officer 760 East Avenue, Bldg 3911 Pensacola, FL 32512-0003 (850) 452-8970 534-6183/7023/6713 (DSN)

NTC SUITABILITY SCREENING CENTER 2051 Cushing Road San Diego, CA 92106 (619) 524-0229 PENDLETON, CA Naval Hospital, Code 01F Box 555191 Camp Pendleton, CA 92055-5191 (760) 763-4254 365-1295/1211 (DSN) BRMEDCLINIC Commanding Officer Box 110193 Barstow, CA 92311-5050 (760) 577-6491, 282-6491 (DSN) CHINA LAKE, CA NAVAL BRANCH MEDICAL CLINIC Officer in Charge 1 Administration Circle China Lake, CA 93555-6100 (760) 939-8060/437-8060 (760) 939-8016 NAVAL BRANCH HEALTH CLINIC MIRAMAR Officer in Charge 19871 Mitscher Way San Diego, CA 92145-5197 1-858-577-9922 (197) 546-56 ROBERT E BUSH NAVAL HOSPITAL Commanding Officer 1145 Sturgis Rd Twentynine Palms, CA 92278-8250 1-760-830-7740

District of Columbia

Georgia

ANDREWS AFB Officer in Charge 1 San Diego Loop, Bldg 3282 Andrews AFB Washington, D.C. 20762 240-857-2850/65 857-2850 (DSN) BMC ANNEX, D.C. Officer in Charge Federal Office Building 2, Room 1346 Washington, D.C. 20370-5000 (703) 614-2722/2726 (224) 1593 BRANCH MEDICAL CLINIC WNY 915 N Street, SE Washington Navy Yard, Bldg 175 Washington, DC 20374 (202) 433-3132 (877) 874-2273 312-288-3132 (DSN) NAVAL BRANCH MEDICAL CLINIC 624 Warrington Avenue, SE Washington, D.C. 20374 (202) 433-3462 288-3462 (DSN) BUREAU OF MEDICINE AND SURGERY, D.C. Commanding Officer 2300 E Street, NW Washington, D.C. 20372 (202) 762-3309 762-3309 (DSN)

NAS ATLANTA Officer in Charge 1000 Halsey Avenue Marietta, GA 30060-5099 (678) 655-6598/4300 625-6598/4300 (DSN) NAVAL BRANCH HEALTH CLINIC, GA Officer in Charge 1425 Prince Avenue Athens, GA 30606-5000 (706) 355-7401 354-7401 (DSN) DWIGHT D. EISENHOWER ARMY MEDCEN, GA 300 East Hospital Road Fort Gordon, GA 30905 (706) 787-9300/2247 BMC ALBANY, GA Commanding Officer 814 Radford Boulevard Suite 20328 Albany, GA 31704 912-573-9406/4265 312-567-6209 (DSN) MEDCLINIC KINGS BAY, GA Commanding Officer 881 USS James Madison Road Kings Bay, GA 31547-0000 (912) 573-4215 573-6394 (DSN)

Colorado

Florida

HQ NORAD-USNORTHCOM Commanding Officer 250 S. Peterson Blvd Ste 203 Peterson AFB, CO 80914-3203 1-719-554-5208 NSGA DENVER BUCKLEY AFB STOP 51 Commanding Officer- ATTN EFMP 17950 E. Steamboat Avenue Aurora, CO 80011-9600 (720) 847-53565357

NAVAL BRANCH MEDICAL CLINIC Commanding Officer 101 Vernon Ave. Ste. 148A Panama City, FL 32407-5000 (850) 230-7085 436-7085 (DSN) BMC MAYPORT, FL Officer in Charge FPO AA, PO Box 280148 Mayport, FL 32228-0148 (904) 270-4259 NAVHOSP JACKSONVILLE ATTN EFM Coordinator 2080 Child Street, Jacksonville, FL 32214-5105 (904) 542-7300

Connecticut NAVAL AMBULATORY CARE CENTER Naval Submarine Base 1Wahoo Avenue, Groton, CT 06349 5600 (860) 694-4918

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Hawaii NMCPH TRIPLER, HI Navy Liaison Unit 1 Jarret White Road Honolulu, HI 96859-5000 1-808-433-9644/6611 808-473-7215 (DSN) BMC MAKALAPA PEARL HARBOR, HI Naval BMC Pearl Harbor Pearl Harbor, HI 96860-4908 (808) 433-9644/6611 808-433-9655 (DSN) USS PAUL HAMILTON Commanding Officer FPO AP 96667-1278 808.474.9092 315-474-9092 (DSN)

Illinois NAV HOSP GREAT LAKES, IL Commanding Officer 3001 Green Bay Road Great Lakes, IL 60064 (224) 610-4763 (847) 688-1900 ext 84763

Indiana NSA CRANE, IN Naval Support Activity Medical Department 300 Highway 361 Crane, IN 47522 (812) 854-3243 361 1-812-854-1339

Louisiana NAVAMBCARECEN NEW ORLEANS, LA Officer in Charge 400 Russell Avenue Bldg 41 Belle Chasse, LA 70037 (504) 678-7926 (504) 678-7922

Maine BRANCH HEALTH CLINIC BRUNSWICK, ME Attn: EFMP Coordinator One Ayers Circle, Building H-1 Portsmouth, NH 03804 (207) 438-2381

Maryland NAVHOSP PAX RIVER, MD Commanding Officer Naval Medical Clinic Attn: HM1 Collins 47149 Buse Road Patuxent River, MD 20670-1540 (301) 995-4070 (301) 995-1703 NAVAL HEALTH CLINIC ANNAPOLIS ,MD Commanding Officer 250 Wood Road Annapolis, MD 21402-5050 (410) 293-1200/1786 (410) 293-2641 FFSC FORT MEADE, MD EFMP Coordinator 2257 Huber Road, Snowden Hall Fort Meade, MD 20755-5290 (301) 677-9014 622-9017/9018 (DSN) BHC ANDREWS AFB, MD Director 1 San Diego Loop, Building 3198 Andrews AFB, MD 20762 (240) 857-2850 (301) 295-5851 NATNAVMECCEN Attn: EFMP Coordinator 8901 Wisconsin Avenue Bethesda, MD 20889-5611 (301) 295-4092/5060 295-4092/5060 (DSN) BRANCH HEALTH CLINIC INDIAN HEAD, MD Officer in Charge 4141 West Wilson Road Indian Head, MD 20640-5035 (760) 889-4850

Massachusetts

New York

Texas

BRANCH HEALTH CLINIC BRUNSWICK, ME Attn: EFMP Coordinator One Ayers Circle, Building H-1 Portsmouth, NH 03804 (207) 438-2381

BMC SARASOTA SPRINGS, NY Naval Health Care New England One West Avenue Sarasota Springs, NY 12866 (518) 583-5300 (518) 583-5310

Mississippi

North Carolina

NAVAL BRANCH HEALTH CLINIC Officer in Charge Pascagoula, MS 39595-5000 (228) 761-2216 358-2365 (DSN) USAF HOSPITAL BILOXI, MS Commander Attn: EFMP Coordinator 500 Fisher Street, Suite 244 Keesler AFB, MS 39534-2566 (228-871-2810 NBHC MERIDIAN, MS Officer in Charge 1801 Fuller Road Meridian, MS 39309-5107 (601) 679-2210/2216 (637) 2210/2216 (DSN) BMC GULFPORT, MS Officer in Charge 5501 Marvin Shields Boulevard Gulfport, MS 39501-5007 (228) 871-2810, 868-2810 (DSN)

NAVHOSP CHERRY POINT, NC Marine and Family Services EFMP PSC Box 8009 MCAS Cherry Point, NC 28533-0009 252-466-0208 (582) 020-8 NAVHOSP CAMP LEJUENE, NC Commanding Officer 100 Brewster Camp Lejeune, NC 28547 (910) 450-4131 (910) 450-4167

Nebraka

NAS JRB WILLOW GROVE, PA Commanding Officer Bldg 137 Naval Air Station JRB Willow Grove, PA 19090 (215) 443-6358 991-6371(DSN)

BHC KINGSVILLE, TX Officer in Charge Attn: EFMP Coordinator 730 Forrestal Street, Suite 101 Kingsville, TX 78363-5116 (361) 516-6493 876-6493 (DSN) BMC INGLESIDE, TX Officer in Charge 327 Coral Sea Road, Suite 165 Ingleside, TX 78362-5025 (361) 776-5542 BMC NAS JRB Fort Worth, TX Naval Branch Medical Clinic 1711 Doolittle Avenue Naval Air Station JRB Fort Worth, TX 76127 (817) 782-5963 739-5963 (DSN) NAVY MEDICINE INFORMATION SYSTEMS SUPPORT ACTIVITY 300 Convent Street, Suite 1100. San Antonio, TX 78205 (210) 808-0677 NAVY MEDICINE TRAINING SUPPORT CENTER 2931 Harney Road, Bldg 903 Fort Sam Houston, TX 78234-6111 210-808-5402 NAVHOSP CORPUS CHRISTI, TX Commanding Officer 10651 E Street Corpus Christi, TX 78419 (361) 961-2810 361-961-6084 861-2254 (DSN) SHEPPARD AIR FORCE BASE 149 Hart Street Sheppard AFB, TX 76311 1-940-676-2271 736-2271 (DSN)

OFFUTT AIR FORCE BASE 55TH MEDICAL GROUP Officer in Charge Offutt AFB, NE 68113-2160 402-294-6869 271-2989 (DSN)

Nevada BMC FALLON, NV Officer in Charge 4755 Pasture Road NAS Fallon, NV 89496 (775) 426-3111 890-3107 (DSN)

New Hampshire BRANCH HEALTH CLINIC BRUNSWICK, ME Attn: EFMP Coordinator One Ayers Circle, Building H-1 Portsmouth, NH 03804 (207) 438-2381 684-2321 (DSN

New Jersey BHC LAKEHURST, NJ Naval Air Engineering Center Officer in Charge HWY 547 B488-2 Lakehurst, NJ 08733-5066 1-732-323-1248/1224/7396 624-1248/7396 (DSN) BMC EARLE, NJ Naval Weapons Station Officer in Charge Earle, NJ 07722 (732) 2303 449-2601 (DSN)

Oklahoma STRATCOM TINKER AFB Commanding Officer ATTN N74 (Medical) 4002 Mitchell Ave. Tinker AFB, OK 73145-8101 (405) 582-6663 (405) 582-6615

Pennsylvania

Rhode Island NAVAL HOSPITAL NEWPORT Commanding Officer 43 Smith Road Newport, RI 02841-5000 (401) 841-6847 (401) 841-6026 NAVAL WAR COLLEGE Commanding Officer 1260 Peary Street Newport, RI 02841-1629 (401) 841-2148 (401) 841-2148

South Carolina NAVHOSP BEAUFORT, SC Commanding Officer One Pinckney Boulevard Beaufort, SC 29902-6148 (843) 228-5900 335-5494 (DSN) NAVAL WEAPONS STATION CHARLESTON Commanding Officer 110 NNPTC Circle Goose Creek, SC 29445 (843) 794-6067 (843) 794-6056

Tennessee BMC MILLINGTON, TN Officer in Charge 5720 Integrity Drive, Building S-771 Millington, TN 38054 (901) 800-7639 (901) 874-6188

Vermont BRANCH HEALTH CLINIC BRUNSWICK, ME Attn: EFMP Coordinator One Ayers Circle, Building H-1 Portsmouth, NH 03804 (207) 438-2381 684-2321 (DSN

Virginia BMC DAHLGREN Officer in Charge 17457 Caffee Road. Bldg 192 Dahlgren, VA 22448 1-800-500-4947 (540) 653-6845 (540) 653-4267 249-1839 (DSN) BMC YORKTOWN, VA Officer in Charge Naval Weapons Station PO Box 0090 Yorktown, VA 23691-0090 (757) 953-8415 (757) 953-8400 NMC QUANTICO, VA Commanding Officer Attn: EFMP Coordinator 3259 Catlin Avenue Quantico, VA 22134-6050 (703) 784-1734 (703) 784-1813

TRICARE PRIME CLINIC NORTHWEST 1317 Ballahack Road, Ste. 100 Chesapeake, VA 23322-2463 (757) 953-6254 BMC DAM NECK, VA Officer in Charge 1885 Terrier Avenue, Suite 100 Virginia Beach, VA 23461-2298 (757) 953-9851 (757) 953-9922 BMC BOONE CLINIC LITTLE CREEK, VA Officer in Charge 1035 Nider Boulevard, Suite 100 Norfolk, VA 23521-2731 (757) 953-8274 BHC NAVSTA NORFOLK, VA SEWELL’S POINT Branch Health Clinic 1721 Taussig Boulevard Norfolk, VA 23511-2899 755-953-8859 377-8883 (DSN)) BMC VIRGINIA BEACH, VA Officer in Charge 1550 Tomcat Boulevard Suite 150 Virginia Beach, VA 23460-2188 (757) 953-3897 377-3761 (DSN) CSC NAVMEDCEN PORTSMOUT, VA Commanding Officer 620 John Paul Jones Circle Portsmouth, VA 23708-2197 (757) 953-2935 TRICARE PRIME CHESAPEAKE Officer in Charge 1011 Eden Way North, Ste. H Chesapeake, VA 23320 (757) 953-6366 US NAVY BUREAU OF MEDICINE AND SURGERY Commanding Officer 7700 Arlington Blvd Falls Church, VA 22042-5219 703-681-9025 USS GEORGE H.W. BUSH CVN 77 Commanding Officer Norfolk, VA FPO AE "09513-2803""" (757) 443-8798 (DSN) 874-5668

Washington BMC BANGOR, WA Officer in Charge 2050 Barb Street Silverdale, WA 98315-2099 (360) 475-4215/4115 722-4396 (DSN NAVHOSP BREMERTON, WA Commanding Officer HPO 1 Boone Road, Code 015 Bremerton, WA 98312-1898 (360) 475-4215 (360) 627-2562 312-494 (DSN) BMC EVERETT, WA Officer in Charge 2000 W. Marine View Drive Everett, WA 98208 (425) 304-4050 NAVHOSP OAK HARBOR, WA Commanding Officer Attn: EFMP Coordinator 3475 N. Saratoga Street Oak Harbor, WA 98278-8800 (360) 257-9547 820-9500 (DSN)

VAQ-133 UNIT 25407 Commanding Officer 3760 N Charles Porter Avenue Oak Harbor, WA 98278 FPO AP 96601-6417 (360) 257-5800 VAQ-137 UNIT 25411 Commanding Officer 3620 N Ranger Street Oak Harbor, WA 98278-6421 FPO AP 96601-6421 (360) 257-8285

West Virginia NSGA SUGAR GROVE, WV Commanding Officer Naval Branch Medical Clinic, Building 63 NSGA Sugar Grove, WV 26815 (304) 249-6380

Commander, Navy Region Europe, Africa, SW Asia FFSP Commanding Officer PSC 817 Box 108 FPO AE 09622 39.081.568.6951 660-2998 (DSN)

Cuba NAVHOSP GUANTANAMO BAY Commanding Officer PSC 1005 BOH 178 FPO AE 09589-1000 011-53-99-72080 660-2998 (DSN)

Guam 36TH MEDICAL GROUP Building 26012, Carolines Ave. Andersen AFB, Guam 96542 671-366-1542 315-366-1542 (DSN) US NAVAL HOSPITAL GUAM Patient Administration PCC 490 Box 7695 FPO AP 96538-1800 1-671-344-9564 315-344-9564 671-344-9153 FAMILY ADVOCACY PROGRAM Officer in Charge Naval Base Guam, Building 104 PSC 455, Box 157 FPO, AP 96540-1157 (671) 333-9827 315-333-9822 (DSN)

Germany LANDSTUHL REGIONAL MEDICAL CENTER CMR 402 Box 4 APO AE 9180 (011) 496-3718681067184 (314) 486-8127

Greece NAVAL BRANCH HEALTH CLINIC Officer in Charge PSC 814 Box 19 FPO AE 9865 314-266-1590

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Military

Italy

Japan

BMC GAETA, IT Director Branch Medical Clinic PSC 811, Box 19 FPO AE 09609-1001 011-39-0771-709-742 011-39-077-1709-7771

BRMEDCLINIC ATSUGI, JA Officer in Charge U.S. Naval Branch Medical Clinic U.S. NAVAIRFAC PSC 477, Box 2 FPO AP 96306-1602 011-81-3117-64-3953 315-264-3959 (DSN) BRMEDCLINIC IWAKUNI, JA Officer in Charge BMC Iwakuni, Japan PSC 561, Box 1863 FPO AP 96310 011-81-827-79-5601 315-253-6161/6352 (DSN) NAF MISAWA, JA Commanding Officer NAF Misawa PSC 76, Unit 5048 APO AP 96319-5000 011-81-176-77-3525 315-226-4092 (DSN) MEDCLINIC SASEBO, JAPAN Officer in Charge Administrative Services Department Naval Base Health Clinic Sasebo, Japan PSC 476, Box 25 FPO AP 96322-0025 011-81-956-50-2499 315-252-2499/3718 (DSN)

BMC LA MADDALENA, IT Officer in Charge U.S. Naval Branch Medical Clinic PSC 816, Box 1785 FPO AE 09612 011-39-0789-798-275 314-623-8275 (DSN) NAVHOSP NAPLES, IT Commanding Officer U.S. Naval Hospital PSC 827, Box 1000 FPO AE 09617 011-39-081-811-6000/1 314-629-6325 (DSN) NAVHOSP SIGONELLA, IT Commanding Officer U.S. Naval Hospital PSC 836, Box 2670 FPO AE 09636-2670 011-39-095-56-4842/0 314-624-4086 (DSN)

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U.S. NAVAL HOSPITAL, OKINAWA JAPAN Officer in Charge PSC 482 FPO AP 96362-1620 (315) 643-2010/2020 (315) 646-7408 (DSN) CSC NAVHOSP YOKOSUKA, JA Commanding Officer U.S. Naval Hospital PSC 475, Box 1, Code 121 FPO AP 96350-1600 011-81-46-816-7287 315-243-7287 (DSN) NAVAL BRANCH HEALTH CLINIC Head Admin Services Dept Sasebo, Japan PSC 476 Box 25 FPO AP 96322-0025 011-81-956-50-3112 (315) 252-2499/3625 USS GEORGE WASHINGTON CVN 73 Commanding Officer FPO AP 96650-2801. 046-816-6655 011-81-46-816-6655 (808) 653-2096

USS BONHOMME RICHARD LHD 6 In-Port Sasebo, Japan Commanding Officer FPO AP 96617-1656. (808) 653-5860 (315) 453-5860 (DSN YAKOTA AIR FORCE BASE Yokota AB, Japan 374th Medical Group Unit 5071 APO AP 96328-5071 (315) 225-3648/3566 (315) 225-8864

Singapore NAVREGCONTCEN SINGAPORE, SI Officer in Charge NAVREGCONTCEN PSC 470, Box 2800 FPO AP 96534-2800 011- (65) 6257-4233 (315) 421-4233 (DSN)

Spain NAVHOSP ROTA, SP Commanding Officer U.S. Naval Hospital PSC 819, Box 18 FPO AE 09645-2500 011 (34) 956-82-3305 (314) 727-3554 (DSN)

United Kingdom NAVHOSP ROTA, SP Landstuhl Regional Medical Center (LRMC) Building 3711 (4 Corners) Landstuhl, Germany 66849 CMR 402 Box 4 APO , AE 09180 011-49-6371-86-8772 DSN 314-486-8772

Military

United States Air Force The Air Force manages Exceptional Family Member Program (EFMP) with a 3-pronged approach (Assignment, Medical and Family Support). The EFMP - Family Support Coordinators (EFMP-FS), located in the Airman and Family Readiness Centers, are available to provide special needs resource and referral information in the local area. This listing is correct as of December 2016. The locations in the listing below are arranged alphabetically by state and include address, phone and email. This listing also includes EFMP-FS contact at Air Reserve locations. Should the contact information be outdated, contact your local Airman and Family Readiness Center.

Alabama MAXWELL-GUNTER AIR FORCE BASE 334-953-3799 (DSN) 312-493-9694 [email protected]

SCHRIEVER AIR FORCE BASE 719-567-3920 (DSN) 312-560-3920 [email protected] U.S. AIR FORCE ACADEMY 719-333-3444/5 [email protected]

Alaska

Delaware

EIELSON AIR FORCE BASE 907-377-2178 [email protected]

DOVER AIR FORCE BASE (302) 677-3258 312-445-3258 [email protected]

ELMENDORF AIR FORCE BASE 907-552-4943/4944 [email protected]

Arizona DAVIS-MONTHAN AIR FORCE BASE 520-228-5690 (DSN) 312-228-5690 [email protected] LUKE AIR FORCE BASE 623-856-6378 [email protected]

District of Columbia

Illinois SCOTT AIR FORCE BASE (618) 256-2273 (DSN) 312-576-8668 [email protected]

Kansas MCCONNELL AIR FORCE BASE (316) 759-3182 (DSN) 312-743-3182 [email protected]

Louisiana

BOLLING AIR FORCE BASE

BARKSDALE AIR FORCE BASE 318-456-9000 [email protected]

(202) 767-0450 (DSN) 312-297-0450 [email protected]

Maryland

BOLLING/PENTAGON 703-693-9460 [email protected]

ANDREWS AIR FORCE BASE (301) 981-7088 (DSN) 312-858-7088 [email protected]

Florida

FORT MEADE

HURLBURT FIELD, EGLIN AFB 850-884-6830 (DSN) 312-579-6830 [email protected]

(301) 677-4138 [email protected]

Massachusetts

California

MACDILL AIR FORCE BASE 813-828-0122 (DSN) 312-968-0122 [email protected]

BEALE AIR FORCE BASE 530-634-2863 (DSN) 312-368-2863 [email protected]

PATRICK AIR FORCE BASE 321-494-5675 (DSN) 312-854-5675 [email protected]

EDWARDS AIR FORCE BASE (661)-277-0723 DSN 527-0723 [email protected] LOS ANGELES AIR FORCE BASE (310) 653-5193 (DSN) 633-5428 [email protected]

TYNDALL AIR FORCE BASE 850-283-4204 (DSN) 312-523-4204/4205 [email protected]

Arkansas LITTLE ROCK AIR FORCE BASE 501-987-8480 DSN-731 [email protected]

TRAVIS AIR FORCE BASE (707) 424-4342 [email protected] VANDENBERG AIR FORCE BASE 805-606-0039 312-276-0039 [email protected] mil

Colorado BUCKLEY AIR FORCE BASE 720-847-9207 (DSN): (312) 847-9207 [email protected] PETERSON AIR FORCE BASE (719) 556-0458 (DSN) 312-834-0458 [email protected]

Georgia MOODY AIR FORCE BASE 229-257-4789 (DSN) 312-460-4789 [email protected] ROBINS AIR FORCE BASE 478 926-1259 (DSN) 312-468-1259 [email protected]

Hawaii HICKAM AIR FORCE BASE 808-449-0300 (DSN) (315) 449-0300 [email protected]

Idaho MOUNTAIN HOME AIR FORCE BASE 208-828-2458 (DSN) 312-728-2458 [email protected]

HANSCOM AIR FORCE BASE 508-233-7222 [email protected]

Mississippi COLUMBUS AIR FORCE BASE 662-434-2701 (DSN) 312-742-2701 [email protected] KEESLER AIR FORCE BASE 228-376-8505 (DSN) 312-591-8501/8700 [email protected]

Missouri

New Mexico

Texas

CANNON AIR FORCE BASE (575) 784-4228 (DSN) 312-681-4228 [email protected]

DYESS AIR FORCE BASE 325-696-5996/5999 (DSN) 312-461-5999 [email protected]

HOLLOMAN AIR FORCE BASE 505-572-7754 (DSN) 312-572-7397 [email protected]

GOODFELLOW AIR FORCE BASE 325-654-3893 (DSN) 312-477-4122 [email protected] af.mil LACKLAND AIR FORCE BASE 210-671-3722 (DSN) 312-473-3722

KIRTLAND AIR FORCE BASE 505 853-1703 (DSN): (312) 263-1703 [email protected]

New Jersey JOINT BASE MCQUIRE-DIXLAKEHURST (609) 754-2023 (DSN) 312-650-3294 [email protected]

North Carolina POPE AIR FORCE BASE 910-394-2538 (DSN) 312-424-2538 [email protected] SEYMOUR JOHNSON AIR FORCE BASE 919-722-1123 (DSN) 312-722-1123 [email protected]

North Dakota MINOT 701-723-3950 (DSN) 312-453-3950 [email protected]

Ohio

Utah HILL AIR FORCE BASE 801-586-2611 (DSN) 312-586-2611 [email protected]

Virginia

Washington

ALTUS AIR FORCE BASE 580-481-7922 (DSN) 312-866-7922 [email protected]

FAIRCHILD AIR FORCE BASE 509-247-2246 (DSN) 312-657-2246 [email protected]

TINKER AIR FORCE BASE 405-734-5690 (DSN) 312-339-2747 [email protected]

MCCHORD AIR FORCE BASE 253-982-2695 (DSN) 312-382-2695 [email protected]

South Carolina

MALMSTROM AIR FORCE BASE 406-731-4900 [email protected]

CHARLESTON AIR FORCE BASE 843-963-4411 (DSN) 312-673-4411 [email protected]

NELLIS AIR FORCE BASE (Includes Creech Air Force Base) 702-652-3327 (DSN) 312-682-3327 [email protected]

FORT SAM HOUSTON 210-221-9826 [email protected] JOINT BASE SAN ANTONIO LACKLAND 210-671-3722 (DSN) 312-473-3722 [email protected]

Oklahoma

Montana

Nevada

SHEPPARD AIR FORCE BASE 940-676-4358 (DSN) 312-736-4358 [email protected]

LANGLEY AIR FORCE BASE 757-764-3990 (DSN) 312-574-3990 [email protected]

VANCE AIR FORCE BASE 580-213-7517 (DSN) 312-448-7517 [email protected]

OFFUTT AIR FORCE BASE 402-294-4329 (DSN) 312-271-4329 [email protected]

RANDOLPH AIR FORCE BASE 210-652-5321/2120/2480 [email protected]

WRIGHT-PATTERSON AIR FORCE BASE 937-656-0946 (DSN) 312-986-0942 [email protected]

WHITEMAN AIR FORCE BASE 660-687-6533 [email protected]

Nebraska

LAUGHLIN AIR FORCE BASE 830-298-4788 (DSN) 312-732-4788 [email protected]

SHAW AIR FORCE BASE 803-895-1163 [email protected]

South Dakota ELLSWORTH AIR FORCE BASE 605-385-4663 (DSN) 312-675-4663 [email protected]

Wyoming F.E. WARREN AIR FORCE BASE 307-773-5945 (DSN) 312-481-3694 [email protected]

Kadena 011-81-98-961-3366 (DSN) 315-634-3366 [email protected]

Misawa 011-81-317-77-4735 [email protected]

Osan 011-82-31-661-5440 (DSN) 315-784-5440

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Yokota

RAF Alconbury

Lajes

Mildenhall/Croughton

011-81-311-755-8725 (DSN) 315-225-8725 [email protected]

44-1480843557 [email protected]

351-295574138 [email protected]

Geilenkirchen

RAF Lakenheath

44-1638543406 (DSN) 314-238-4140/3490/5289 [email protected]

49-2451633791 [email protected]

44-1638523847 [email protected]

Incirlik

RAF Menwith Hill

Call Ramstein Air Base, Germany 90-322-3166755 (DSN) 314-676-6755 leigh.[email protected]

44-1423-777730 (DSN) 314-262-7730 [email protected]

Academy 719-333-3444 (DSN) 312-333-3444 [email protected]

Aviano and Moron 39-0434305407 (DSN) 314-722-8110/8111 [email protected]

United States Coast Guard The Coast Guard Special Needs Program is a mandatory enrollment program for all active duty and selected reserve members on orders for 181 days or more who have dependent family members diagnosed with medical, psychological, physical, or educational special needs. The objective of the program is to identify and support the special needs of a Coast Guard family and allow the active duty member to be mission ready. The Special Needs Program, working in concert with other military and civilian agencies, provides a comprehensive, coordinated, multidisciplinary approach to community support, housing, medical, educational, and personnel services for the Coast Guard families with special needs. This listing is current as of December 2016.

Alaska HEALTH SAFETY AND WORK LIFE FIELD OFFICE KETCHIKAN Ms. Betsy Longenbaugh Special Needs Program PO Box 25517 Juneau, AK 99802-5517 (907) 463-2125 HEALTH SAFETY AND WORK LIFE FIELD OFFICE KODIAK Ms. Vanessa Bryant Special Needs Program PO Box 195022 Storis Drive, Building N-27 Kodiak, AK 99619-5022 (907) 487-5525, Ext. 274

California HEALTH SAFETY AND WORK LIFE FIELD OFFICE ALAMEDA Ms. Kristine Rutland-Cooper Special Needs Program Coast Guard Island, Building 16 Alameda, CA 94501-5100 (510) 437-3881

HEALTH SAFETY AND WORK LIFE FIELD OFFICE SAN PEDRO Mr. Locksley (Tony) Haynes Special Needs Program 1001 South Seaside Avenue, Building 38 San Pedro, CA 90731-0208 (310) 521-6134

District of Columbia HEALTH SAFETY AND WORK LIFE FIELD OFFICE National Capital Region Ms. Sharon Wingate Ms. Rhonda Creecy Special Needs Program 2100 Second Street, SW Washington, D.C. 20593-0001 (202) 372-4083 (202) 372-4088

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Florida HEALTH SAFETY AND WORK LIFE FIELD OFFICE MIAMI Ms. Mirtha Rivera Special Needs Program 15614 SW 117th Avenue Miami, FL 33177-1630 (305) 278-6665

Hawaii HEALTH SAFETY AND WORK LIFE FIELD OFFICE HONOLULU Special Needs Program 400 Sand Island Parkway Honolulu, HI 96819-4398 (808) 842-2089

Ramstein 49-6371471742 [email protected]

Spangdahlem 49-6565616422 [email protected]

Louisiana

Ohio

HEALTH SAFETY AND WORK LIFE FIELD OFFICE NEW ORLEANS Ms. Leslie Mathes Special Needs Program 1790 Saturn St. New Orleans, LA 70129 (504) 253-4709 (504) 253-4708

HEALTH SAFETY AND WORK LIFE FIELD OFFICE CLEVELAND Ms. Cindy Pratt Special Needs Program 1240 East Ninth Street Cleveland, OH 44199-2060 (216) 902-6353

Massachusetts

HEALTH SAFETY AND WORK LIFE FIELD OFFICE SAN JUAN Ms. Jennifer Avila Special Needs Program 5 Calle La Puntilla San Juan, PR 00901-1800 (787) 729-2339

HEALTH SAFETY AND WORK LIFE FIELD OFFICE BOSTON Ms. Jacquelyn Tellier Special Needs Program 427 Commercial Street Boston, MA 02109 (617) 223-3484 (617) 223-3477

Puerto Rico

Virginia

HEALTH SAFETY AND WORK LIFE FIELD OFFICE ST. LOUIS Ms. Janice Conrad Special Needs Program 1222 Spruce Street St. Louis, MO 63103 (314) 269-2435

HEALTH SAFETY AND WORK LIFE FIELD OFFICE PORTSMOUTH Ms. Kelly Beck Ms. Kimberly Carmon-Stanley Special Needs Program 4000 Coast Guard Boulevard Portsmouth, VA 23703-2199 (757) 686-4023 (757) 686-4023

New Jersey

Washington

HEALTH SAFETY AND WORK LIFE FIELD OFFICE Training Center Cape May Ms. Kathy Grant Special Needs Program 1 Munro Avenue Cape May, NJ 08204 (609) 898-6885

HEALTH SAFETY AND WORK LIFE FIELD OFFICE SEATTLE Ms. May Chao-Higginbotham Special Needs Program 1519 Alaskan Way South Seattle, WA 98134-1192 (206) 217-6786

Missouri

JASON EHRHART, WOUNDED VETERAN

BECAUSE THEY SHOULDN’T HAVE TO SACRIFICE ANY MORE. Wounded Warrior Project ® long-term support programs provide these brave men and women whatever they need to continue their fight for independence. At no cost. For life. Help us help more of these warriors in their new life-long battle. Find out what you can do at findWWP.org. ©2015 WOUNDED WARRIOR PROJECT, INC. ALL RIGHTS RESERVED.

Military

The US Army Reserves, National Guard and Air National Guard This listing is accurate as of October 2016 as provided by Airman & Family Services, 3500 Fletcher Avenue, Andrews Airforce Base, Maryland 20762. Tel: (240) 612-7466.

ALABAMA 117 ARW Joy Miller Airman and Family Readiness Program Manager 5401 East Lake Blvd Birmingham, AL 35217 DSN 778-2699 (205) 714-2699 [email protected] 187 FW Sharon Hubbert Airman and Family Readiness Program Manager 5187 Selma Highway Montgomery, AL 36108 DSN 358-9119 (334) 394-7527 [email protected]

ALASKA 168 ARW Airman and Family Readiness Program Manager 2680 Flightline Ave, Suite 117 Eielson AFB, AK 99702-1740 DSN 317-377-8715 907-377-8715 176 WG C. Jill Meszaros Airman and Family Readiness Program Manager 17441 Airlifter Drive Joint Base ElmberdolfRichardson, AK 99506 DSN 317-626-1130 (907) 551-7649 [email protected]

ARIZONA 161 ARW Brian Benbow Airman and Family Readiness Program Manager 3200 E. Old Tower Rd, Bldg 10 Phoenix, AZ 85034-7263 DSN 853-9094 (602) 302-9094 [email protected] 162 FW Barbara Gavre Airman and Family Readiness Program Manager 1650 E. Perimeter Tucson, AZ 85706 DSN 844-6566 Comm Phone (520) 295-6566 [email protected]

ARKANSAS 188 FW Michell Pike Airman and Family Readiness Program Manager 4850 Leigh Avenue Fort Smith, AR 72903-6018 DSN 778-5167 (479) 573-5167 [email protected]

189 AW Earl Summers Airman and Family Readiness Program Manager 112 CMSgt Williams Drive , Room 125 Little Rock AFB, AR 72099 DSN 731-5952 (501) 987-5952 [email protected]

CALIFORNIA 129 RQW Carolann Wunderlin Airman and Family Readiness Program Manager Bldg 653 Johnny Luv Lane Moffett Federal Airfield CA 94035 DSN 359-9118 (650) 603-9118 [email protected] 144 FW Airman and Family Readiness Program Manager 5323 E. McKinley Avenue Fresno, CA 93727-2199 DSN 839-5383 (559) 454-5383 146 AW Julie Morency Airman and Family Readiness Program Manager 100 Mulcahey Drive Port Hueneme, CA 93041-4002 DSN 893-7468 (805) 986-7468 [email protected] 163 RW Deborah Hambrick Airman and Family Readiness Program Manager 1620 Graeber Bldg 2270 March ARB, CA 92518-1624 DSN 447-2165 (951) 655-2165 [email protected]

COLORADO 140 WG Michelle Abarca Airman and Family Readiness Program Manager 18860 E. Breckenridge Ave, Bldg 801, Rm N-2595 Buckley AFB, CO 80011 DSN 847-9116 (720) 847-9116 [email protected]

CONNECTICUT 103 AW Airman and Family Readiness Program Manager 100 Nicholson Rd, Bldg 78 East Granby, CT 06026 DSN 220-2730 (860) 292-2730

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DELAWARE 166 AW Airman and Family Readiness Program Manager 2600 Spruance Drive New Castle, DE 19720 DSN 445-7327 (302) 323-3327

DISTRICT OF COLUMBIA 113 WG Seconda Moore Airman and Family Readiness Program Manager 3252 E. Perimeter Rd, Rm 108 Andrews Air Force Base, MD 20762 DSN 857-9746 (240) 857-9746 [email protected]

FLORIDA 125 FW Laura Yates Airman and Family Readiness Program Manager 14300 Fang Drive Jacksonville, FL 32218 DSN 641-7027 (904) 741-7027 [email protected]

GEORGIA 116 ACW Eileen Byrd Airman and Family Readiness Program Manager 515 Borghese Drive, Bldg 2072 Robins Air Force Base, GA 31098 DSN 241-1286 (478) 201-1286 [email protected] 165 AW Sheila Keeton Airman and Family Readiness Program Manager 1401 Robert B. Miller Drive Garden City, GA 31408 DSN 860-8363 (912) 966-8363 [email protected]

GUAM 254 ABG Airman and Family Readiness Program Manager GUANG Unit 14021 APO, AP 96543-4021 DSN 315-366-5437 (671) 366-5437

HAWAII 154 WG Lorna Souza Airman and Family Readiness Program Manager 360 Mamala Bay Dr., Bldg 3417 Hickam Air Force Base HI 96853-5517 DSN 315-448-7282 (808) 448-8236 ext 1-3 [email protected]

IDAHO

KANSAS

124 WG Kristin Harrison Airman and Family Readiness Program Manager 3787 W Aeronca St, Bldg 400 Boise, ID 83705 DSN 422-5374 (2080 422-5374 [email protected]

ILLINOIS

184 IW Hilari DeLaRosa Airman and Family Readiness Program Manager 52955 SW Jayhawk Dr, Bldg 65, Rm 122 McConnell Air Force Base KS 67221 DSN 743-7092 (316) 759-7092 [email protected]

126 ARW Travis Barker, Jr. Airman and Family Readiness Program Manager 126 Air Guard Way Scott Air Force Base, IL 62225 DSN 760-5784 (618) 222-5784 [email protected]

190 ARW Adrienne Dickey Airman and Family Readiness Program Manager 5920 SE Coyote Drive Topeka, KS 66619 DSN 720-4940 (785) 861-4940 [email protected]

182 AW Kim Hawcroft-Crouch Airman and Family Readiness Program Manager 2416 S. Falcon Blvd, Bldg 628 Peoria, IL 61607 DSN 724-5339 (309) 633-5339 [email protected]

KENTUCKY

183 FW Jessica Bode Airman and Family Readiness Program Manager 3101 J. David Jones Parkway Springfield, IL 62707-5001 DSN 892-8569 (217) 757-1569 [email protected]

INDIANA 122 FW Connie Douthat Airman and Family Readiness Program Manager 3005 West Ferguson Road Fort Wayne, IN 46809-0122 DSN 778-1409 (260) 478-3409 [email protected] 181 IW Margaret Amos Airman and Family Readiness Program Manager (800) S. Petercheff Street Terre Haute, IN 47803 DSN 873-5545 (812) 877-5545 [email protected]

IOWA 132 FW Ashley Wood Airman and Family Readiness Program Manager 3100 McKinley Ave Des Moines, IA 50321 DSN 261-8786 (515) 261-8786 [email protected] 185 ARW Loretta Risdal Airman and Family Readiness Program Manager 2920 Headquarters Avenue Sioux City, IA 51111-1300 DSN 585-0817 (712) 233-0817 [email protected]

123 AW Amy Quimby Airman and Family Readiness Program Manager 1101 Grade Lane Louisville, KY 40213 DSN 741-4647 (502) 413-4647 [email protected]

LOUISIANA 159 FW Cherie Spooner Airman and Family Readiness Program Manager 400 Russell Ave PO Box 46 New Orleans, LA 70143-0027 DSN 457-8505 (504) 391-8505 [email protected]

MAINE 101 ARW Andrew Matlins Airman and Family Readiness Program Manager 103 Maineiac Ave, Suite 505 Bangor, ME 04401-8099 DSN 698-7494 (207) 404-7494 [email protected]

MARYLAND 175 WG Jeanne Benden Airman and Family Readiness Program Manager 2701 Eastern Blvd Baltimore, MD 21220 DSN 243-6768 (410) 918-6768 [email protected] ANGRC Airman and Family Readiness Program Manager 3500 Fetchet Avenue Joint Base Andrews, MD 20762 DSN 612-8175 240-612-8175

MASSACHUSETTS 102 IW Erin Creighton Airman and Family Readiness Program Manager 158 Reilly Street Box 70 Otis Air National Base, MA 02542 DSN 557-4855 (508) 968-4855 [email protected] 104 FW Lisa Potito Airman and Family Readiness Program Manager 175 Falcon Drive Westfield, MA 01085 DSN 698-1183 (413) 568-9151 [email protected]

MICHIGAN 110 ATKW Jean Wixson Airman and Family Readiness Program Manager 3545 Mustang Avenue Battle Creek, MI 49037 DSN 580-3493 (269) 969-3493 [email protected] 127 WG Paulus Obey Airman and Family Readiness Program Manager 29868 George Ave, Bldg 168 Selfridge ANGB, MI 48045 DSN 273-5583 (586) 239-5583 [email protected]

MINNESOTA 133 AW Kelly Wilkinson Airman and Family Readiness Program Manager 631 Minuteman Drive St Paul, MN 55511 DSN 783-2367 (612) 713-2367 [email protected] 148 FW Jennifer Kuhlman Airman and Family Readiness Program Manager 4680 Viper Street Duluth, MN 55811 DSN 825-7833 (218) 788-7833 [email protected]

MISSISSIPPI 172 AW Marianne Breland Airman and Family Readiness Program Manager 141 Military Drive #47 Jackson, MS 39232 DSN 828-8211 (601) 405-8211 [email protected] 186 ARW Lauren Martinez Airman and Family Readiness Program Manager 6225 M Street Meridian, MS 39307 DSN 778-9623 (601) 484-9623 [email protected]

GULFPORT CRTC Airman and Family Readiness Program Manager 4715 Hewes Avenue Gulfport, MS 39507 DSN 363-6018 228-214-6018

MISSOURI 131 BW Ivory Jamerson Airman and Family Readiness Program Manager 36 Sherman Rd St Louis, MO 63125 DSN 824-6362 (660) 687-7972 [email protected] 139 AW Jane Gabriel Airman and Family Readiness Program Manager 705 Memorial Drive St Joseph, MO 64503 DSN 356-3511 (816) 236-3511 [email protected]

MONTANA 120 FW Paige Held Airman and Family Readiness Program Manager 2800 Airport Avenue B Great Falls, MT 59404 DSN 791-0867 (406) 791-0867 [email protected]

NEBRASKA 155 ARW Airman and Family Readiness Program Manager 2420 W Butler Ave Lincoln, NE 68524 DSN 279-1588 (402) 309-1588

NEVADA 152 AW Fred Barton Airman and Family Readiness Program Manager 1776 National Guard Way Reno, NV 89502-4494 DSN 830-4585 (775) 788-4585 [email protected]

NEW HAMPSHIRE

177 FW Jean Perry Airman and Family Readiness Program Manager 400 Langley Road Egg Harbor Township, NJ 08234-9500 DSN 455-6248 (609) 761-6248 [email protected]

NEW MEXICO 150 FW Airman and Family Readiness Program Manager 2251 Air Guard Rd. SE Kirtland Air Force Base NM 87117-5875 DSN 263-5668 (505) 853-5668

NORTH DAKOTA 119 FW Mark Ostern Airman and Family Readiness Program Manager 1400 32nd Ave North Fargo, ND 58102 Comm Phone (701) 451-2112 [email protected]

OHIO

NEW YORK

121 ARW Carolyn Ebert Airman and Family Readiness Program Manager 7370 Minuteman Way Columbus, OH 43217 DSN 696-4417 (614) 492-4417 [email protected]

105 AW Patricia Shilling Airman and Family Readiness Program Manager 1 Maguire Way Newburgh, NY 12550-5075 DSN 636-2062 (845) 563-2062 [email protected]

178 FW Jane Esprit Airman and Family Readiness Program Manager 5319 Regula Ave Springfield, OH 45502 DSN 346-2583 (937) 525-2583 [email protected]

106 RQW Lisa D’Agostino Airman and Family Readiness Program Manager 150 Old Riverhead Road Westhampton Beach, NY 11978-1201 DSN 456-7133 (631) 723-7133 [email protected]

179 AW Emily Bachman Airman and Family Readiness Program Manager 1947 Harrington Memorial Road Mansfield, OH 44903-0179 DSN 696-6600 (419) 520-6600 [email protected]

107 AW Jeanne Goetze Airman and Family Readiness Program Manager 9910 Blewett Ave Niagara Falls, NY 14304 DSN 238-3411 (716) 236-3411 [email protected] 109 AW Colleen Casey Airman and Family Readiness Program Manager 1 Air National Guard Road Scotia, NY 12302 DSN 344-2357 (518) 344-2357 [email protected]

180 FW Judy York Airman and Family Readiness Program Manager 2660 S. Eber Rd Swanton, OH 43558 DSN 580-4550 (419) 868-4550 [email protected]

OKLAHOMA 137 ARW Tracy Poindexter Airman and Family Readiness Program Manager 5624 Air Guard Drive Oklahoma City, OK 73179 DSN 720-5683 (405) 686-5683 [email protected]

157 ARW Bonnie Rice Airman and Family Readiness Program Manager 302 Newmarket Street, Bldg 16 Pease ANGB, NH 03803-0157 DSN 852-3545 (603) 430-3545 [email protected]

174 FW Kelly Bessel Airman and Family Readiness Program Manager 6001 E. Molloy Rd Syracuse, NY 13211-7099 DSN 243-2577 Comm Phone (315) 233-2577 [email protected]

NEW JERSEY

NORTH CAROLINA

OREGON

108 ARW Doug Ridgway Airman and Family Readiness Program Manager 3327 Charles Blvd McGuire Air Force Base, NJ 08641 DSN 650-4479 (609) 754-4479 [email protected]

145 AW Terry Henderson Airman and Family Readiness Program Manager 4930 Minuteman Way Charlotte, NC 28208 DSN 231-4949 (704) 398-4949 [email protected]

142 FW Amy Conroy Airman and Family Readiness Program Manager 6801 NE Cornfoort Rd, Bldg 300 Portland, OR 97218 DSN 638-4193 (503) 335-4193 [email protected]

138 FW Connie Hurt Airman and Family Readiness Program Manager 9100 E 46th St North Tulsa, OK 74115 DSN 894-7732 (918) 833-7732 [email protected]

173 FW Airman and Family Readiness Program Manager 211 Arnold Ave Ste 30 Klamath Falls, OR 97603 DSN 830-6112 (541) 885-6112

PENNSYLVANIA 111 ATKW Anna Richar Airman and Family Readiness Program Manager 1051 Fairchild Street, Bldg 203 Willow Grove (ARS), PA 19090 DSN 991-1409 (215) 443-1409 [email protected] 171 ARW Deborah Krall Airman and Family Readiness Program Manager 300 Tanker Road Coraopolis, PA 15108-4249 DSN 294-7365 (412) 776-7365 [email protected] 193 SOW Airman and Family Readiness Program Manager 81 Constellation Court Middletown, PA 17057 DSN 423-3155 (717) 948-3155

PUERTO RICO/VIRGIN ISLANDS 156 AW Airman and Family Readiness Program Manager Muniz Air Base Carolina, PR 00727 DSN 860-7443 (787) 253-7443

RHODE ISLAND 143 AW Tina Scully Airman and Family Readiness Program Manager 1 Hercules Way North Kingstown, RI 02852 DSN 476-3148 (401) 886-0148 [email protected]

SOUTH CAROLINA 169 FW Carolyn DeLille Airman and Family Readiness Program Manager 1325 South Carolina Rd #31 Eastover, SC 29044-5028 DSN 583-8089 (803) 647-8089 [email protected]

SOUTH DAKOTA 114 FW Nicole Wager Airman and Family Readiness Program Manager 1201 West Algonquin Street Sioux Falls, SD 57104 DSN 798-7962 (605) 988-5962 [email protected]

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Military

TENNESSEE 118 AW Linda Kieser Airman and Family Readiness Program Manager 240 Knapp Blvd Nashville, TN 37217 DSN 844-8012 (615) 660-8012 [email protected] 134 ARW Stephen Latham Airman and Family Readiness Program Manager 91 Briscoe Drive McGhee Tyson ANGB TN 37777-6203 DSN 266-3107 (865) 985-3107 [email protected] 164 AW Betty Gaskins Airman and Family Readiness Program Manager 4593 Swinnea Road Memphis, TN 38118-7101 DSN 726-7125 (901) 291-7125 [email protected]

TEXAS 136 AW Heidi Bearden Airman and Family Readiness Program Manager 300 Hensley Ave Bldg 1673 Fort Worth, TX 76127-1673 DSN 874-3558 (817) 852-3558 [email protected]

147 RW Monalisa Norton Airman and Family Readiness Program Manager 14657 Sneider Street Houston, TX 77034 DSN 454-2056 (281) 929-2056 [email protected] 149 FW Shanita Lanier Airman and Family Readiness Program Manager 107 Hensley Street San Antonio, TX 78236 DSN 945-6171 (210) 925-6171 [email protected]

UTAH 151 ARW Jill Lukes Airman and Family Readiness Program Manager 765 N. 2200 W. Salt Lake City, UT 84116 DSN 245-2524 (801) 245-2524 [email protected]

VERMONT 158 FW Mary Mahoney Airman and Family Readiness Program Manager 150 NCO Drive South Burlington, VT 05403 DSN 220-8035 (802) 652-8035 [email protected]

VIRGINIA

WEST VIRGINIA

WYOMING

192 FW Angeli Wade Airman and Family Readiness Program Manager 45 Nealy Avenue, Ste 102 Langley Air Force Base VA 23665 (757) 764-2388 [email protected]

130 AW Airman and Family Readiness Program Manager 1679 Coonskin Drive Charleston, WV 25311 DSN 366-6625 (304) 341-6625

153 AW Denis Rampolla Airman and Family Readiness Program Manager 217 Dell Range Blvd Cheyenne, WY 82009 DSN 388-6063 (307) 772-6063 [email protected]

WASHINGTON 141 ARW Mary Thomas Airman and Family Readiness Program Manager 1 East Bong Street Fairchild Air Force Base WA 99011 DSN 657-7009 (509) 247-7009 [email protected]

WISCONSIN 115 FW Tanya Genz Airman and Family Readiness Program Manager 3110 Mitchell Street Madison, WI 53704 DSN 724-8654 (608) 245-4654 [email protected]

194 RSW Angela Sutter Airman and Family Readiness Program Manager Bldg 107, Room 112 Camp Murray Tacoma, WA 98430 DSN 370-3397 (253) 512-3397 [email protected]



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167 AW Sherry Lewis Airman and Family Readiness Program Manager 222 Sabre Jet Boulevard Martinsburg, WV 25405-7704 DSN 242-5590 (304) 616-5590 [email protected]



128 ARW Matthew Sharman Airman and Family Readiness Program Manager 1919 East Grange Ave Milwaukee, WI 53207 DSN 580-8249 (414) 944-8249 [email protected]



NGB/A1S Mr Marlin Ruhl Chief Services Division (240) 612-9922 [email protected]

NGB/A1SA Lt Col Steven Rothstein Chief, Airman and Family Services Branch (240) 612-9146 [email protected] Ms Kim Bowman, Airman and Family Readiness Program Manage (240) 612-9518 [email protected] Mrs Jennifer Wickizer TAP (240) 612-7284 [email protected] MSgt Kim Gregory TAP Funding (ADOS) (240) 612-9443 [email protected]

I had a complete meltdown with PTSD (posttraumatic stress disorder). I thought I was losing my mind. I’d never been out of control before, and it was hard to admit I needed help, but I wanted my old self back. I’ve gotten that and more. I’m strong. I’m healthy. I have tools, I have knowledge, and I have strength and courage to deal with it. I’m doing just fine. RON WHITCOMB SGT US ARMY 1968 - 1969 SQUAD LEADER, VIETNAM

PTSD TREATMENT CAN TURN YOUR LIFE AROUND. FOR MORE INFORMATION VISIT WWW.PTSD.VA.GOV/ABOUTFACE

WWW.PTSD.VA.GOV

Military

School Liaison Officers This listing for School Liaison Officers (SLOs) is correct to the best of our knowledge as of December 2016. For corrections or updates please contact your local SLOs office. The School Liaison Program offers another source of support for military families with children. SLOs also serve as advocates for children with special needs within the school system. The Department of Defense Education Activity (DoDEA) website (www.dodea.edu) describes the School Liaison Program in the following way (at militaryk12partners. dodea.edu): The vision of the School Liaison Program is to coordinate and assist school-aged children of military parents with educational opportunities and information necessary to succeed in an academic environment. School Liaison Officers (SLOs) also network, educate, and work in partnership with local schools to provide caring adults to enhance the education experience. The mission of the School Liaison Officer is to provide military commanders with the support necessary to coordinate and advise military parents of school-aged children on educational issues and needs and to assist in solving education-related problems. The goals of the program are to identify barriers to academic success and develop solutions; promote parental involvement in their children’s education; develop and coordinate partnerships in education; provide parents with the tools they need to overcome obstacles to education that

Northeast Region IMCOM NORTHEAST SCHOOL TRANSITION SPECIALIST Albert Williams - NORTHEAST STS/SLO POC ATTN: IMWR -NE 5B Northgate Road Fort Monroe, VA 23651 (757) 788-5274 (757) 788-2750 [email protected] ABERDEEN PROVING GROUNDS Eileen Campbell - SLO IMNE-APG-MWY Bldg 2503 High Point Road Aberdeen Proving Grounds, MD 21005-5001 (410) 278-2857 (410) 278-4658 www.apgmwr.com/family/youth_li aison.html FORT BELVOIR MaryJo Chapman - SLO ATTN: IMNE-BEL-MWC 9500 Barlow Road Fort Belvoir, VA 22060-2299 (703) 805-9100 655-9117 (703) 805-9136 [email protected] CARLISLE BARRACKS Jacqueline Schultz-Rowles - SLO ATTN: IMNE-CLB-MWC/SLO 637 Liggett Road Carlisle, PA 17013 (717) 245-4555 312-242-3801 (717) 245-4615 [email protected] DETROIT ARSENAL MICHIGAN Wendy May - SLO ATTN: IMNE-MIG-MWR 6501 E. Eleven Mile Road Building 230 Warren, MI 48397 (586) 282-4537 786-4537 (DSN) [email protected] www.detroitarsenalfmwr.com/fami ly/sls/index.htm

FORT DETRICK - FREDERICK Beverley Tuggle - CLEOS ATTN: MCHD CSR-CY 924 Doughten Drive Fort Detrick, MD 21702 (301) 619-7100 (DSN) 312-343-7100 (301) 619-5108 [email protected] FORT DETRICK - SILVER SPRINGS Patricia Harris - CLEOS Director ATTN: MCWR-DPA-CSD Fort. Detrick Silver Springs 6900 Georgia Ave., NW Building 11 Rm 1-101 Washington, DC 20307 (202) 782-6982 662-6982 (DSN) (202) 782-4303 FORT DRUM Michele Carlton - SLO ATTN: IMNE-DRM MWR Bldg P-10720, Clark Hall Fort Drum, NY 13602 315-772-3214 772-3214 315-772-3073 [email protected] www.drummwr.com/SchoolLiaiso nOffice.htm Terri Spencer - SLO ATTN: IMNE-DRM MWR Bldg P-10720, Clark Hall Fort Drum, NY 13602 315-772-3214 772-3214 315-772-3073 [email protected] www.drummwr.com/SchoolLiaiso nOffice.htm FORT HAMILTON Lisa Sheehan - SLO ATTN: IMNE-HAM MWR 137C Poly Place Brooklyn, NY 11252 (718) 630-4040 232-4525 (718) 630-4874 [email protected] www.fthamiltonmwr.com/mwr_cys /cys.htm

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stem from the military lifestyle; and to promote and educate local communities and schools regarding the needs of military children. The Army Morale, Welfare, and Recreation Website has a complete listing of all Department of Defense School Liaison Officers at the following address: www.armymwr.com/portal/family/childandyouth/schoolsupport.asp. This year’s guide includes a listing for the Army SLOs only. The offices in the listing below are arranged by region (Northeast, West, Southeast, Europe, Korea, Pacific). Main Contacts U.S. ARMY FAMILY MORALE WELFARE AND RECREATION COMMAND; CHILD, YOUTH & SCHOOL SERVICES

ATTN: FMWRC-CYS 4700 King Street, 4th Floor, Alexandria, VA 22302-4418 ((703) 681-5385, DSN: 761-5385, ((703) 681-7240 US ARMY INSTALLATION MANAGEMENT COMMAND AT J & M BUSINESS PARK; ARMY CHILD, YOUTH AND SCHOOL SERVICES

11711 IH35 N, Suite 110 San Antonio, TX 78233 ((210) 424-8426 Acting Director: Margaret Hinson Acting Division Chief: Dr. June Michel School Support Program Managers: Van Chaney, Dr. Carmen Marino, Jon Burnham, Nanette Pigg

FORT LEE Nancy Elzie - SLO ATTN: IMNE-LEE-MWC 10624 Yorktown Drive Fort Lee, VA 23801 (804) 765-3813 (804) 765-3581 [email protected] www.leemwr.com/CYS/cys_cys_sl o.htm FORT LEONARD WOOD Annmarie Loredo - SLO ATTN:IMNE-LNW-MWC 140 Replacement Ave. Suite 1201 Fort Leonard Wood, MO 65473 (573) 329-3105 581-0357 (573) 329-4545 [email protected] www.myarmyonesource.com/Chil dYouthandSchoolServices/School Support/default.aspx FORT MCCOY Rebecca Walley - SLO/SAS ATTN: IMNE-MCY-MWB-C 2187 South J Street Sparta, WI 54656 (608) 388-3818 (608) 388-5011 FORT MEADE Sarah Bonise - SLO ATTN: IMNE-MEA-MWC 1900 Reece Road Fort Meade, MD 20755 (301) 677-2300 (301) 677-1361 (301) 677-1148 [email protected] FORT MONMOUTH Laura Chlapowski - SLO ATTN: IMNE-MON-MWC 2566 Laboratory Road Fort Monmouth, NJ 07703 (732) 532-6166 (723) 532-1277

FORT MONROE Charlie French - SLO ATTN: IMNE-MWC 60 Ingalls Rd Building 82, Room 366 Fort Monroe, VA 23651 (888) 567-7442 680-4673 (757) 788-2712 [email protected] www.monroemwr.com/schoolliais on.htm FORT MYER E. Ann Daffin - SLO ATTN: IMNE-MYR-MWC 102 Custer Rd Building 203, Room 215 Fort Myer, VA 22211 (703) 696-6296/6271 (703) 696-6258 (703) 696-8585 [email protected] www.fmmcmwr.com/school_liaiso n.htm PICATINNY ARSENAL Kristen Milner - CLEOS/FCC School Liaison Officer Bldg. 3156 Picatinny Arsenal, NJ 07806 (973) 724-5555 (973) 724-5163 [email protected] www.pica.army.mil/mwr/CYS/CLE OS/SLO.htm ROCK ISLAND ARSENAL Emily Jepsen - SLO/FTS 1st Floor, East Wing 1 Rock Island Arsenal Building 110 Rock Island, IL 61299 (309) 782-4420 (309) 782-0837 emily. [email protected] www.riamwr.com/sls/sls.htm TOBYHANNA ARMY DEPOT Kelly Armes - CLEOS ATTN: AMSEL-TY-CS-F 11 Hap Arnold Blvd Building 1001 Tobyhanna Army Depot, PA 18466-5002 (570) 895-6559 795-6559 (570) 615-6128 [email protected]

US MILITARY ACADEMY WEST POINT Jodi Cabrera - SLO ATTN: IMNE-MIL-MWC 500 Washington Road West Point, NY 10996 (845) 938-2092 (845) 938-3809 [email protected] www.westpointmwr.com/school/s choolliaison.htm (808) 438-8666

West Region FMWRC/IMCOM WEST POC Nanette Pigg - WEST SLO POC US Army, IMCOM at J&M Business Pk 2450 Stanley Rd, Bldg 1000 Suite 101 Fort Sam Houston, TX 78234-6101 (210) 295-2238 [email protected] COMBAT SUPPORT TRAINING CENTER Susan (Dee Dee) Lana - CYS Coordinator ATTN: IMWE-CST-MWR U.S. Army CSTC MWR/CYS 790 5th Street, Building 312 Dublin, CA 94568 (831) 386-2690 (925)-875-4497 [email protected] www.liggett.army.mil/sites/cys/pr ograms&services.asp DUGWAY PROVING GROUND Sandra Goff - CYS Coordinator ATTN: IMWE-DUG-MWC 5116 Kister Ave Building 5124 Dugway, UT 84022 (435) 831-2941 (435) 831-2261 [email protected]

FORT BLISS Debbie Trexler - YESS ATTN: IMWE-BLS-MWC Bldg. 503B, Room 223 El Paso, TX 79916 (915) 568-2784 (915) 568-2144 [email protected] www.blissmwr.com/yess Pat Lopez - SLO Bldg. 503B, Room 223 El Paso, TX 79916 (915) 569-5064 [email protected] www.blissmwr.com/sts Mary Avila - SLO ATTN: IMWE-BLS-MWC Room 224 Bldg. 503B, Room 223 El Paso, TX 79916 (915) 569-50645065 978-6549 [email protected] www.blissmwr.com/sts Antonio Baca - SLO ATTN: IMWE-BLS-MWC Room 224 Building 503 Pershing Rd El Paso, TX 79916 (915) 569-50645065 www.blissmwr.com/sts Hilda Lopez - SLO ATTN: IMWE-BLS-MWC Bldg 503B Pershing Rd Room 224 El Paso, TX 79916 (915) 569-50645065 [email protected] www.blissmwr.com/sts FORT CARSON Manuel Pedraza - SLO ATTN: IMWE-CAR-MWC 1518 Prussman Building 1518 Colorado Springs, CO 80913 (719) 526-9987 (719) 524-0194 [email protected] www.mwrfortcarson.com/cyssschool-info.php Stephanie Gillotte - SLO ATTN: IMWE-CAR-MWC 1518 Prussman Building1518 Colorado Springs, CO 80913 (719) 526-4255 (719) 524-0194 [email protected] www.mwrfortcarson.com/cyssschool-info.php Carmelita Holien - SLO ATTN: IMWE-CAR-MWC 1518 Prussman Building1518 Colorado Springs, CO 80913 (719) 524-0642 (719) 524-0194 [email protected] www.mwrfortcarson.com/cyssschool-info.php Myrna Kennedy - SLO ATTN: IMWE-CAR-MWC 1518 Prussman Building 1518 Colorado Springs, CO 80913 (719) 526-4251 (719) 524-0194 [email protected] www.mwrfortcarson.com/cyssschool-info.php

FORT HOOD VACANT - SLO ATTN: IMWE-HOD-MWC 761st Tank Battalion Ave Building 121, Rm 147 Fort Hood, TX 76544 (254) 288-7946 (254) 553-3340 (254) 287-7351 www.hoodmwr.com/school_liaiso n_office.htm Terri Jones - SLO ATTN: IMWE-HOD-MWC 761st Tank Battalion Ave Building 121, Rm 147 Fort Hood, TX 76544 (254) 288-7946 (254) 287-7351 [email protected] www.hoodmwr.com/school_liaiso n_office.htm Jason (JJ) Johnson - SLO ATTN: IMWE-HOD-MWC 761st Tank Battalion Ave Building 121, Rm 147 Fort Hood, TX 76544 (254)288-7946 (254) 553-3340 (254) 287-7351 [email protected] www.hoodmwr.com/school_liaiso n_office.htm Candace Niederauer - SLO ATTN: IMWE-HOD-MWC 761st Tank Battalion Ave Building 121, Rm 147 Fort Hood, TX 76544 (254) 553-3340 (254) 553-3340 (254) 287-7351 [email protected] www.hoodmwr.com/school_liaiso n_office.htm FORT HUACHUCA Darrell Leigh - SLO ATTN: IMWE-HUA-MWC Tindall Street, Bldg 52111 Fort Huachuca, AZ 85613 (520) 533-0874 (821) 0874 (520) 533-2125 [email protected] www.mwrhuachuca.com/schoolliai son.html Billie Guy - SLO ATTN: IMWE-IRW-MWC Building 1300 Muese-Argonne Street Building 1323 Porkchop and Goldstone Fort Irwin, CA 92310 (760) 380-6880 (760) 380-7353 [email protected] www.irwin.army.mil/Community/S chools/Pages/default.aspx FORT IRWIN Jennifer Quaye - SLO ATTN: IMWE-IRW-MWC Building 1300 Muese-Argonne Street Building 1323 Porkchop and Goldstone Fort Irwin, CA 92310 (760) 380-6880 (760) 380-7353 [email protected] www.irwin.army.mil/Community/S chools/Pages/default.aspx FORT LEAVENWORTH Jessica Brushwood - SLO ATTN:IMWE-LVW-MWC 600 Thomas Ave. Unit 2 Fort Leavenworth, KS 66027 (913) 684-1823 (913) 684-4237 [email protected] FORT RILEY

Erin Sullivan - SLO ATTN: IMWE-RLY-MWC 6620 Normandy Ave. Fort Riley, KS 66442 (785) 717-2258 856-3259 (785) 239-9964 [email protected] www.rileymwr.com/webcontent/subpages/cysschool.html VACANT - SLO ATTN: IMWE-RLY-MWC 6620 Normandy Ave. Fort Riley, KS 66442 (785) 239-9435 (DSN) 312-856-9435 (785) 239-9548 www.rileymwr.com/webcontent/subpages/cysschool.html Wynnie Wahlfeldt - SLO ATTN: IMWE-RLY-MWC 6620 Normandy Ave. Fort Riley, KS 66442 (785) 239-9435 DSN) 312-856-9435 (785) 239-9548 [email protected] www.rileymwr.com/webcontent/subpages/cysschool.html Sandy Johnson - SLO ATTN: IMWE-RLY-MWC 6620 Normandy Ave. Fort Riley, KS 66442 ((785) 239-9435 DSN) 312-856-9435 (785) 239-9548 [email protected] www.rileymwr.com/webFORT SILL Lindsay Ralston - SLO ATTN: IMWE-SIL-MWC 4700 N. Mow-way Road Suite 100, Box 33307 Fort Sill, OK 73503-4493 (580) 250-4263 [email protected] Merlinda Tate - SLO ATTN: IMWE-SIL-MWC 4700 N. Mow-way Road Suite 100 Box 33307 Fort Sill, OK73503 (580) 250-4263 [email protected] JOINT BASE LEWIS MCCHORD Janis Gardner - SLO ATTN: IMWE-LEW-CYS-SLO 20-R Building 2140, Liggett Avenue Rm 400, PO Box 339500, MS 20 Tacoma, WA 98433 253-967-8430 (DSN) 312-357-8430/3397 253-967-3311 [email protected] www.jblmmwr.com/SLTS.html Dawana Perry - SLO ATTN: IMWE-LEW-CYS-SLO 20-R Building 2140, Liggett Avenue Rm 400, PO Box 339500, MS 20 Tacoma, WA 98433 253-967-8430 (DSN) 312-357-8430/3397 253-967-3311 [email protected] www.jblmmwr.com/SLTS.html Antoinette Walker - SLO ATTN: IMWE-LEW-CYS-SLO 20-R Building 2140, Liggett Avenue Rm 400, PO Box 339500, MS 20 Tacoma, WA 98433 253-967-8430 (DSN) 312-357-8430/3397 253-967-3311 [email protected] www.jblmmwr.com/SLTS.html l Norma Melo - YESS/SLO ATTN: IMWE-LEW-CYS-SLO 20-R Building 2140, Liggett Avenue Rm 400, PO Box 339500, MS 20

Tacoma, WA 98433 253-967-8430 (DSN) 312-357-8430/3397 253-967-3311 [email protected] www.jblmmwr.com/SLTS.html MCALESTER ARMY AMMUNITION PLANT Karen Vieau - CLEOS ATTN: SJMMC-CAS 1-C Tree Road, Building 559 McAlester, OK 74501 (918) 420-6204 956-6204 (918) 420-7398 [email protected] www.mcaapmwr.com/Child%20A nd%20Youth%20Services/School %20Liaison%20Office.htm PRESIDIO OF MONTEREY Dana Bouchillon - SLO ATTN: IMWE-POM-MWC Building 4260 Giggling 6th Division Rd Monterey, CA 93944 (831) 242-6904 (831) 242-6128 [email protected] SIERRA ARMY DEPOT VACANT ATTN: IMWE-SAD-CYS SIAD Building 145 Building 4260, Gigling Rd Herlong, CA 96113 (530) 827-4696 (530 ) 827-4294 www.sierra.army.mil/Public/CYS.a sp WHITE SANDS MISSILE RANGE Damon McGibboney - SLO 2nd Foor BLDG 501/ Aberdeen Ave. White Sands, NM 88002 (575) 678-7090 (575) 678-2579 [email protected] www.wsmrcyss.com/school_liaiso n_office.php YUMA PROVING GROUND Paula Alarcon - CLEOS ATTN: IMWE-YMA-MWC U.S. Army Yuma Proving Ground 301 C Street, Bldg. 300 Yuma, AZ 85365 (928) 328-3096 (899) 309-6 (928) 328-2729 [email protected] http://www.yuma.army.mil/.

Southeast Region FMWRC/IMCOM SOUTHEAST REGION POC Jon Burnham - SOUTHEAST SLO POC US Army, IMCOM at J&M Business Pk 2450 Stanley Rd, Bldg 1000, Ste 101 Fort Sam Houston, TX 78234-6101 (210) 295-2238, (210) 295-2208 [email protected]

FORT BENNING Tawanna Brown - YESS Director ATTN: IMSE-BEN-MWC Eckel Street, Building 2783 Fort Benning, GA 31905 (706) 545-3062 (DSN) 312-8353062 (706) 545-3020 [email protected] Connie Carter - SLO ATTN: IMSE-BEN-MWC Eckel Street, Building 2783 Fort Benning, GA 31905 (312) 835-3062 (706) 545-3020 [email protected] FORT BRAGG Emily Grimes - SLO ATTN: IMSE-BRG-MWC Soldiers Support Center, 4th Fl Rm 420, Building: 4-2843 Fort Bragg, NC 28310-5000 (910) 432-1008 (866) 567-5899 [email protected] www.fortbraggmwr.com/CYS/sls.h tm Shevelle Godwin - SLO ATTN: IMSE-BRG-MWC Soldiers Support Center, 4th Fl Rm 420, Building 4-2843 Fort Bragg, NC 28310 (910) 432-1008 (866) 567-5899 [email protected] www.fortbraggmwr.com/CYS/sls.h tm Iris Pierce - SLO ATTN: IMSE-BRG-MWC Soldiers Support Center, 4th Fl Rm 420, Building 4-2843 Fort Bragg, NC 28310 (910) 432-1008 (866) 567-5899 [email protected] www.fortbraggmwr.com/CYS/sls.h tm Glenda Mack - YESS Director ATTN: IMSE-BRG-MWC Soldiers Support Center, 4th Fl Rm 420, Building 4-2843 Fort Bragg, NC 28310 (910) 432-1008 (866) 567-5899 [email protected] www.fortbraggmwr.com/CYS/sls.h tm Gerhard Guevarra - SLO ATTN: IMSE-BRG-MWC Soldiers Support Center, 4th Fl Rm 420, Building 4-2843 Fort Bragg, NC 28310 (910) 432-1008 (866) 567-5899 (910) 907-5046 [email protected] www.fortbraggmwr.com/CYS/sls.h tm FORT BUCHANAN Gladys Colon - CLEOS ATTN: IMSE-BUC-MWC 218 Brook St., Bldg. 1029 Fort Buchanan, PR 934 (787) 707-2364 (787) 783-2523 (787) 707-2315 [email protected]

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FORT CAMPBELL Pauline Hutchinson - SLO ATTN: IMSE-CAM-MWC 5668 Wickham Ave. Fort Campbell, KY 42223 (270) 798-3965 (270) 298-2962 [email protected] Tayranette Johnson-Williams SLO ATTN: IMSE-CAM-MWC 5668 Wickham Ave. Fort Campbell, KY 42223 (270) 798-3965 (270) 798-2962 [email protected] us.army.mil FORT GORDON Sharon Beaver - SLO ATTN: IMSE-GOR-MWC Lane Ave., Building 44401 Fort Gordon, GA 30905 (706) 791-7270 (DSN) 780-7270 (706) 791-7680 [email protected] Melissa Drinnen - SLO ATTN: IMSE-GOR-MWC Lane Ave., Building 44401 Fort Gordon, GA 30905 (706) 791-7270 (DSN) 780-7270 (706) 791-4440 [email protected] FORT JACKSON Keisha McCoyWilson - SLO ATTN: IMSE-JAC-MWC Joe E. Mann Bldg C- Wing Room C-04 Fort Jackson, SC 29207 (803) 751-6150 (803) 751-1442 [email protected] conus.army.mil www.fortjacksonmwr.com/school_l iaison/ Ann Gordon - SLO ATTN: IMSE-JAC-MWC Joe E. Mann Bldg C- Wing Room C-04 Fort Jackson, SC 29207 (803) 751-6150 [email protected] www.fortjacksonmwr.com/school_l iaison/ Beverly Metcalfe - YESS Director ATTN: IMSE-JAC-MWC Joe E. Mann Bldg C- Wing Room C-04 Fort Jackson, SC 29207 (803) 751-6150 [email protected] FORT KNOX Linda Wood - YESS Director ATTN: IMSE-KNX-MWC 411 Eisenhower Avenue Fort Knox, KY 40121 502-624-6291/8391 (DSN) 312-464 (502) 624-6223 [email protected] Brenda Weatherington - SLO ATTN: IMSE-KNX-MWC 411 Eisenhower Avenue Fort Knox, KY 40121 502-624-6291/8391 (DSN) 312-464 (502) 624-6223 [email protected]

Willa Garrett - SLO ATTN: IMSE-CAM-MWC 5668 Wickham Ave. Fort Campbell, KY 42223 (270) 798-4959 (270) 298-2962 [email protected] FORT MCPHERSON Camellia Jefferson - SLO ATTN: IMSE-MPH-MWC 1386 Troop Row SW Atlanta, GA 30330 (404) 464-2773 (312) 367-2773 (404) 464-2979 FORT POLK Peggy Bluitt - SLO ATTN: IMWE-POL-MWC Building 400, 6880 Radio Road PO Box 3914 Fort Polk, LA 71459 (337) 531-9481 (DSN) 863-9481 (337) 531-2900 [email protected] http://fortpolkcyss.com/graduatio n_requirements FORT RUCKER John Jennings - YESS Director ATTN: IMSE-RCK-MWC Building 2806 7th & Division Road Fort Rucker, AL 36362 (334) 255-9108/9127 (334) 255-9319 www.ftruckermwr.com/School FORT STEWART/HUNTER David Smith - YESS Director ATTN: IMSE-STW-MWC 500 Lindquist Ave Building 443 Fort Stewart, GA 31314 (912) 767-2311 (DSN) 312-8702311 (912) 767-5334 www.stewartmwr.com FORT STEWART Greg Cooke - SLO ATTN: IMSE-STW-MWC 230 Neal Blvd., Building 1279 Savannah, GA 31409 (912) 315-6816 (912) 315-6183 [email protected] www.stewartmwr.com HUNTER ARMY AIR FIELD Autry McGary - SLO ATTN: IMSE-STW-MWC 171 Haley Avenue Building 1286, Suite 156 Savannah, GA 31409 (912) 315-6586 (912) 315-3746 [email protected] www.stewartmwr.com ANNISTON ARMY DEPOT JoAnne Amundson - CYS Coordinator/SLO ATTN: IMSE-AAD-MWC 7 Frankford Avenue, Bldg. 1500 Anniston, AL 36201-4199 (256) 235-7654 (DSN) 312-5717654 (256) 235-7744 [email protected] MIAMI/SOUTHERN COMMAND Sheila Martinez - SLO ATTN: IMSE-AGM-MWC Family Support Center 8300 NW 33rd St., Suite 180 Miami, FL 33172 (305) 437-2665 (DSN) 567-2665 [email protected]

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PINE BLUFF ARSENAL Tina Alexander - CLEOS ATTN: AMSSB-OBP-PAY 16-050 Sibert Road White Hall, AR 71602 (870) 540-2972 [email protected] REDSTONE ARSENAL Barbara Williams - YESS Director ATTN: IMSE-RED-MWC 1500 Weeden Mountain Road Huntsville, AL 35898 (256) 842-9642 (256) 842-9459 [email protected]

Europe Region IMCOM-EUROPE SCHOOL LIAISON OFFICER/STS Judi Patrick - Region SLO/STS ATTN: IMWR-EU-CY Unit 29353, Box 200 APO, AE 9014 06202-80-5313 496-5629 (DSN) [email protected] USAG ANSBACH Derek Hyde - SLO ATTN: CYSS/SLO USAG Ansbach Unit 28614, APO, AE 91522 011-49-981-183-1500 (DSN) 314-4681500 314-467-3214 [email protected] USAG BAMBERG Jonathan DeLong - SLO ATTN: CYSS/SLO USAG Bamberg Unit 27535 APO, AE 9139 (314) 469-7891 (314) 469-1770 [email protected] www.bamberg.army.mil/Informati on/schools.asp USAG BAUMHOLDER Pamela Johnson - SLO ATTN: CYSS/SLO USAG Baumholder Unit 23746 Box #33 APO, AE 09034-0003 06783-6-1580 (DSN) 485-1580 067-836-7366 [email protected] USAG BENELUX Barbara Troxell - SLO ATTN: CYSS/SLO USAG Benexlux Unit 21420, Box 6629 APO, AE 09705 065-32-6230 (DSN) 366-6230 065-444-896 [email protected] USAG BRUSSELS Paula Emmert - SLO ATTN: CYSS/SLO USAG Brussels Unit 8100, Box 6 APO, AE 9714 011-32-2717-9670 (314) 368-9670 314-355-8781 [email protected]

USAG GARMISCH Ellen Harris - CYSS Coordinator ATTN: CYSS/SLO USAG Garmisch Unit 24515 APO, AE 09053-4515 08821-750-3300 DSN 440-3300 011-498-8217503809 [email protected] www.garmisch.army.mil USAG GRAFENWOEHR Ann Bruennig - SLO ATTN: FMWR/CYSS/SLO Unit 28130 APO, AE 09114-8130 011-49-6221-57-6883 / 6975 (314) 388-9398 011-49-6221-57-7288 [email protected] www.grafenwoehr.army.mil/sites/n ewcomers/schools.asp USAG BADEN WUERTTEMBERG Jim Ruehmling - SLO ATTN: CYSS/SLO USAG Heidelberg Unit 29245 APO, AE 9102 011-49-6221-338-9398 (314) 388-9398 011-49-6221-57-7288 [email protected] USAG HOHENFELS Kristin Jacobs-Schmid - SLO ATTN: CYSS/SLO USAG Hohenfels Unit 28216 APO, AE 09173-8216 466-1500 466-221-9 [email protected] USAG KAISERSLAUTERN Lynn Rice - SLO ATTN: CYSS/SLO USAG Kaiserslautern CMR 488 APO, AE 9088 (011) 49-6372-91-8258 (314)493-4123 (011) 49-631-350-7555 [email protected] USAG LIVORNO Vaun Smith - CYSS Coordinator ATTN: CYSS/SLO USAG Livorno Unit 31301, Box 55 APO, AE 9613 (011) 39-050-54-8084 (314) 633-8084 (314) 633-7428 [email protected] USAG MANNHEIM Kris Wheeler - SLO ATTN: CYSS/SLO USAG Mannheim Unit 29901 APO, AE 09085-0001 49-6221-57-6883/6975 (314) 370-6883 (011) 496-217303184 [email protected] USAG SCHINNEN Julie Vannatter - SLO ATTN: CYSS/SLO USAG Schinnen Unit 21602 APO, AE 9703 0031.46443.7507/7508/7509 DSN: 360.7507/7508 0031.46443.2966

USAG SCHWEINFURT Beth Potter - SLO ATTN: CYSS/SLO USAG Schweinfurt Unit 25850, Box 11 APO, AE 9033 09721-96-1380 (354) 138-0 [email protected] USAG STUTTGART Wayne “Joe” Holder - SLO ATTN: CYSS/SLO USAG Stuttgart Unit 30401 APO, AE 9107 (011) 49-0703-115-2681 431-2681 (011) 49-711-680-7465 [email protected] USAG STUTTGART Arnita “Rena” Hall - SLO ATTN: CYSS/SLO USAG Stuttgart Unit 30401 APO, AE 09107-0401 (314)431-2506 (314) 430-7465 (314)431-2571 USAG VICENZA Norie McCall - SLO ATTN: CYSS/SLO USAG Vicenza Unit 31401 Box 10 APO, AE 9630 (011) 0444-71-8020 (314) 634-5998 (314) 634-6383 [email protected] USAG WIESBADEN Peter Witmer - SLO ATTN: CYSS/SLO USAG Wiesbaden Unit 29063 APO, AE 09005-9623 (011) 49-611-4080-129 (314) 335-5129 (314) 335-5129 [email protected] www.wiesbaden.army.mil/sites/ser vices/school_liaison.asp

Korea Region IMCOM KOREA SCHOOL TRANSITION SPECIALIST & SLO Susan Rowe - Region STS/SLO ATTN: IMKO-MWD-C IMCOM-Korea FMWR Unit 15742 APO, AP 96205-5742 (011) 82-2-7915-5227 (315) 725-5227 (315) 725-3204 [email protected] USAG YONGSAN VACANT - SLO ATTN: IMKO-AB-MWC USAG-Yongsan DFMWR, CYS Unit 15333 APO, AP 96204-0042 (011) 822-7913-4678 (315) 738-5556 (315) 738-3529 USAG HUMPHREYS Joseph Jacks - CLEOS ATTN: IMKO-AC-MWC USAG Humphreys, DFMWR, CYS Unit 15228 APO, AP 96271-5716. 011-82-31-690-8069 (DSN) 315-7538069 315-753-8401 [email protected]

USAG DAEGU AngieMarie Hart - CLEOS ATTN: IMKO-AD-MWC USAG Daegu, DFMWR, CYS Unit 15746 APO, AP 96218 (315) 765-7722 (315) 764-5536 (DSN) 315-764-5535 USAG RED CLOUD Cindy York - SLO USAG Red Cloud, DFMWR, CYSS Unit 15707 APO, AP 96258-5707 011-82-31-869-1826 (DSN) 315-730 [email protected]

Pacific Region IMCOM PACIFIC SCHOOL LIAISON OFFICER/STS Doug Kelsey - Region SLO/STS ATTN: IMPC-MWD US ARMY IMCOM - Pacific 132 Yamanaga Street, Bldg 104 Fort Shafter, HI 96858 (808) 438-1693 (315) 438-5492 (808) 438-8666 FORT GREELY Jack Detzel - SLO ATTN: IMPC-GRE-ZA Building 847 Big Delta Ave Fort Greeley, AK 99731 (907) 873-5662 (907) 873-4346 (907) 873-4596 [email protected] FORT WAINWRIGHT Lynda Goodwin - SLO ATTN: APVR-WCA-CY 1060 Gaffney Road, # 6600 Fort Wainright, AK 99703-0000 (907) 353-1110 (907) 361-5825 (907) 361-4393 [email protected] HAWAII Byron Nagasako - SLO 241 Hewitt Street, Building 1283 Schofield Barracks, HI 96857 (808) 655-8326 (808) 655-9818 [email protected] www.mwrarmyhawaii.com Tamsin Keone - Director, SSS 241 Hewitt Street Building 1283 Schofield Barracks, HI 96857 (808) 655-8326 (808) 655-9818 www.mwrarmyhawaii.com/schoolsupport-services Wayne Yoshino - SLO 241 Hewitt Street Building 1283 Schofield Barracks, HI 96857 (808) 655-9818 (808) 655-9818 [email protected] www.mwrarmyhawaii.com Mark Maddox - Transition Specialist 241 Hewitt Street, Building 1283, Schofield Barracks, HI 96857 (808) 656-0079 (808) 656-0039 [email protected]

Wendy Nakasone - SLO 241 Hewitt Street, Building 1283, Stop 112 Schofield Barracks, HI 96857 (808) 655-9818 (808) 655-9818 [email protected] www.mwrarmyhawaii.com OKINAWA Yuki Lovato - SLO APO, AP 96376 011-81-6117-44-4703 (315) 644-4703 (315) 644-4928 USAG JAPAN ATTN: IMPA-JA-MWC U.S. Army Garrison Japan Unit 45006 APO, AP 96343-5006 (011) 81-46-407-4950 (011) 814-64073703 [email protected] www.mwrjapan.jp.pac.army.mil/cy s/liaison.aspx

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Soldier and Family Assistance Centers (SFACs) This listing for the United States Army’s Soldier and Family Assistance Centers (SFACs) is correct to the best of our knowledge as of December 2016. We used the information provided by our SFAC contact. The United States Department of the Army established Soldier and Family Assistance Centers to provide a central location for wounded Soldiers and their families to receive the comprehensive and varied services they need as Soldiers recover from their injuries and they and their families adapt to these changes in their lives. The My Army Life Too Website (myarmylifetoo.com) describes the program in the following way (at www.myarmylifetoo.com/ skins/malt/ default.aspx [choose the Virtual Soldier and Family Assistance Center link]): Wounded and injured Soldiers and their Families expect and deserve the very best care and leadership from America’s Army. The Wounded

Soldier and Family Hotline can be reached from 7 a.m. to 7 p.m., Monday through Friday, at 1-800-984-8523. SFAC services will be tailored and responsive to the needs of the Warriors in Transition (WT) and their Families. Most services will be present in the SFAC location in order to maximize the convenience to the WTs and their Families. Other services requiring less than a full-time presence will be brought forward to the SFAC at designated times. Still other services will be provided through priority off-site appointments coordinated by the SFAC staff. SFAC sites will provide a warm, relaxed environment where Soldiers and their Families can gather to foster physical, spiritual, and mental healing. The locations in the listing below are listed alphabetically by state and then alphabetically by installation.

Balboa Warrior Transition Unit

Fort Carson Warrior Transition Battalion

Fort Leonard Wood Warrior Transition Unit

Fort Stewart Warrior Transition Battalion

Joint Base San Antonio Warrior Transition Battalion

34800 Bob Wilson Drive, Bldg 26 San Diego, CA 92134 (760) 401-6703

1665 Cochrane Circle, Bldg 7495 Fort Carson, CO 80913 (719) 524-1301

126 Missouri Avenue Fort Leonard Wood, MO 65473 (573) 596-0035

703 East 9th Street North Bldg 4970 Fort Stewart, GA 31314 (912) 435-5529

3551 Roger Brooke Drive Fort Sam Houston, TX 78234 (210) 916-9730; (210) 916-7738

Fort Belvoir Warrior Transition Battalion

Fort Drum Warrior Transition Battalion

Fort Meade Warrior Transition Unit

Fort Wainwright Warrior Transition Unit

5960 9th Street Fort Belvoir, VA 22060-9501 (571) 231-5191

3-85th Mountain Infantry Battalion Bldg 10503A South Riva Ridge Loop Fort Drum, NY 13602 (315) 774-2429

4409 Llewellyn Avenue Fort George Meade, MD 20755 (301) 677-8192

Bldg. 3410 Rhineland Ave Fort Wainwright, AK 99709 (907) 353-5551

Fort Polk Warrior Transition Unit

Joint Base ElmendorfRichardson Warrior Transition Unit

Fort Benning Warrior Transition Battalion 7909 Martin Loop, Bldg 9256 Fort Benning, GA 31905 (706) 544-1952

Fort Bliss Warrior Transition Battalion Marshall Road, Bldg 807 Fort Bliss, TX 79916 (915) 742-8084

Fort Gordon Warrior Transition Battalion 226 Central Hospital Rd, Bldg 327 Fort Gordon, GA 30905 (706) 787-2983

Fort Hood Warrior Transition Battalion

Fort Bragg Warrior Transition Battalion

36000 Darnall Loop Fort Hood, TX 76544-4752 (254) 553-4796 (254) 288-4161

Reilly Road, Bldg 4-2817 Fort Bragg, North Carolina (910) 907-5219

Fort Knox Warrior Transition Battalion

Fort Campbell Warrior Transition Battalion

SGM William E. Sumner Complex Bldg 503 459 9th Calvary Regiment Ave Fort Knox, KY 40121 (502) 664-6429

Indiana Avenue, Bldg 2443 Fort Campbell, KY 42223 (270) 412-6540

1778 Third Street Bldg 250 Fort Polk, LA 71459 (337) 653-3355

Fort Riley Warrior Transition Battalion 610 Caisson Hill Road Fort Riley, KS 66442 (785) 240-7212; (785) 239-8493

Fort Sill Warrior Transition Unit 4301 Wilson Street Fort Sill, OK 73503 (800) 984-8523

Fisher Houses This listing for Fisher Houses is correct to the best of our knowledge, as of December 2016. We used the information provided by the Fisher House™ Foundation. For corrections or updates, please contact our military editor at [email protected] For 19 years, the Fisher House program has been easing the burden for families of servicemembers recovering from injuries. The Fisher House Website (www.fisherhouse.org) describes its program in the following way: A Fisher House™ is “a home away from home” for families of patients receiving medical care at major military and VA medical centers. The homes are normally located within walking distance of the treatment facility or have transportation available. The Fisher House locations in the listing below are arranged alphabetically by state and then alphabetically by location.

Alaska

California

JOINT BASE ELMENDORFRICHARDSON Jenny Hall 4943 Zeamer Avenue 673 MDSS/SGS/FH Elmendorf AFB, AK 99506 (907) 222-1673 [email protected]

CAMP PENDLETON Kiana Bright MCIWEST-Fisher House Bldg 2014 San Jacinto Rd. Camp Pendleton, CA 92055 (760) 763-5308 [email protected]

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VA GREATER LOS ANGELES HEALTHCARE SYSTEM Sharon Hudson 11301 Wilshire Blvd. Bldg 523 Los Angeles, CA 90073 (310) 268-4457 [email protected]

Bldg. 4984, Zuckert Ave. JBER, Alaska 99505-3200 (907) 580-0651

Joint Base Langley-Eustis Warrior Transition Unit 576 Jefferson Avenue Fort Eustis, VA 23604 (757) 878-1579 ext 221 (757) 314-7500

Joint Base Lewis McChord Warrior Transition Battalion

Tripler Warrior Transition Battalion 130 Duncan Street Trailer 7 Schofield Barracks, HI 96857 (808) 655-5646 (808) 469-1708

Walter Reed National Military Medical Center Warrior Transition Brigade 8901 Wisconsin Avenue Bethesda, MD 20889- 5600 (301) 400-2306

Warrior Transition BattalionEurope APO AE 09227 Kaiserslautern, Germany COMM 0631-411-6241 DSN 314-483-6241

9059 Gardner Loop Road Tacoma, WA 98431 (253) 966-4200

VA PALO ALTO HEALTH CARE SYSTEM Betsey Striebel 3801 Miranda Avenue Palo Alto, CA 94303 (650) 493-5000 x60384 [email protected] NAVAL MEDICAL CENTER SAN DIEGO Kristin Jackson 34800 Bob Wilson Dr, Bldg 46 San Diego, CA 92134 (619) 532-8751 [email protected] DAVID GRANT USAF MEDICAL CENTER, TRAVIS AFB I & II Charlene Hall 100 Bodin Circle Travis AFB, CA 94535 (707) 423-7550 [email protected]

Colorado VA EASTERN COLORADO HEALTH CARE SYSTEM Tessa Levy 1954 N. Quentin Street Aurora, CO 80045 (303) 399-8020 ext 2541 [email protected]

Delaware FISHER HOUSE FOR FAMILIES OF THE FALLEN TSgt Cheryl Uylaki 116 Purple Heart Dr Dover AFB, DE 19902 (302) 677-5317 [email protected]

District of Columbia

Hawaii

Missouri

Texas

Virginia

VA MEDICAL CENTER Stacey Childs 50 Irving St. Washington, DC 20422 (202) 745-2482 [email protected]

TRIPLER ARMY MEDICAL CENTER I & II Anita Clingerman 315 Krukowski Road Honolulu, HI 96819 (808) 433-1291 [email protected] Illinois EDWARD HINES JR. VA HOSPITAL Holly Wright 5000 South 5th Ave. Hines, IL 60141 (708) 202-7154 [email protected] Kentucky BLANCHFIELD ARMY COMMUNITY HOSPITAL Wendy Carlston 652 Joel Drive Fort Campbell, KY 42223 (270) 798-8330 [email protected] Maryland MALCOLM GROW CLINICS & SURGERY CENTER Janet Grampp 1076 West Perimeter Road Andrews AFB, MD 20762 (301) 981-1243 [email protected] NSA BETHESDA HOME OF WALTER REED NATIONAL MILITARY MEDICAL CENTER I, II, III, IV, V Mike Ybarra 24 Stokes Road Bethesda, MD 20814-5002 (301) 295-5334 [email protected] WALTER REED AT FOREST GLEN ANNEX Maurice Borde 173 Stephen Sitter Ave. Silver Spring, MD 20910 (301) 319-5442 [email protected]

VA ST. LOUIS MEDICAL CENTER Vanniecia Brown 1 Jefferson Barracks Road St. Louis, MO 63125 (314) 894-6145 [email protected]

VA NORTH TEXAS HEALTH CARE SYSTEM Lydia Henderson 4500 S. Lancaster Rd, Bldg 79 Dallas, TX 75216 (214) 857-4400 [email protected] WILLIAM BEAUMONT ARMY MEDICAL CENTER Jennifer Daugherty Bldg 7360 Rodriguez St. El Paso, TX 79930 (915) 742-1860 [email protected] CARL R. DARNALL ARMY MEDICAL CENTER Theresa Johnson CRDAMC Building 36015 Fisher Lane Fort Hood, TX 76544 (254) 286-7927 [email protected] MICHAEL E. DEBAKEY VA MEDICAL CENTER I & II Frank Kelley 2002 Holcombe Boulevard Houston, TX 77030 (713) 794-8095 [email protected] BROOKE ARMY MEDICAL CENTER - SAN ANTONIO MILITARY MEDICAL CENTER I, II, III, IV Inge Godfrey 3623 George C. Beach Road Fort Sam Houston, TX 78234 (210) 916-6000 [email protected] WILFORD HALL AMBULATORY SURGICAL CENTER - SAN ANTONIO MILITARY MEDICAL CENTER I, II, III Sara Richardson-Paniagua 1445 Foster Avenue Lackland AFB, TX 78236 (210) 671-6037 [email protected] TEXAS VETERANS HEALTH CARE SYSTEM Erik Zielinski 7485 Wurzbach Rd. San Antonio, TX 78229 (210) 617-5542 Ext. 61672 [email protected]

Naval Medical Center Portsmouth Jill Thompson 853 Fisher Drive Portsmouth, VA 23708 (757) 953-6889 [email protected] ouse.org HUNTER HOLMES MCGUIRE VA MEDICAL CENTER Wayne Walker 1201 Broad Rock Boulevard Richmond, Virginia 23249 (804) 675-6639 [email protected] FORT BELVOIR COMMUNITY HOSPITAL Rocky Calderon 9201 Woodbury Rd Ft. Belvoir, VA 22060 (703) 805-5203 [email protected]

Florida BAY PINES VA HEALTHCARE SYSTEM Lana Toenjes 10000 Bay Pines Boulevard St. Petersburg, FL 33708 (727) 319-1350 [email protected] FISHER HOUSE OF THE EMERALD COAST, EGLIN AFB Ron Gribble 350 Boatner Rd. Eglin AFB, FL 32542 850-883-2865 [email protected] MIAMI VA HEALTHCARE SYSTEM Carolyn Soucy 1201 NW 16th St. Miami, FL 33125 (305) 575-7260 [email protected] JAMES A. HALEY VETERANS' HOSPITAL Paula Welenc 13000 Bruce B. Downs Boulevard Tampa, FL 33612 (813) 910-3000 [email protected] WEST PALM BEACH VA MEDICAL CENTER Shelley Prickett 7305 North Military Trail, RT 122 West Palm Beach, FL 33410 (561) 422-5554 [email protected] NORTH FLORIDA SOUTH GEORGIA VETERANS HEALTH SYSTEM Tanya Fookes 1601 SW Archer Road Gainesville, FL 32608 (352) 548-6492 [email protected]

Georgia CHARLIE NORWOOD VA MEDICAL CENTER Anne Arnold One Freedom Way Augusta, GA 30904 (706) 729-5773 [email protected] DWIGHT DAVID EISENHOWER ARMY MEDICAL CENTER Francisco Cruz Fisher House Road Bldg 280 Fort Gordon, GA 30905-5650 (706) 787-7100 [email protected]

Massachusetts VA BOSTON HEALTHCARE SYSTEM Beth St. Pierre 1400 VFW Parkway West Roxbury, MA 02132 (857) 203-4000 [email protected]

Minnesota MINNEAPOLIS VA HEALTH CARE SYSTEM Mary Oslund One Veterans Drive Minneapolis, MN 55417 (612) 467-5602 [email protected]

Mississippi KEESLER MEDICAL CENTER Larry Vetter 509 Fisher Street Keesler AFB, MS 39534-2599 (228) 377-8264 [email protected]

New York STRATTON VA MEDICAL CENTER Michael Fitzpatrick 113 Holland Avenue Albany, NY 12208 (518) 626-6919 [email protected]

North Carolina NAVAL HOSPITAL, CAMP LEJEUNE Josephine Callahan 4 Recovery Way Camp Lejeune, NC 28547 (910) 450-3885 [email protected] WOMACK ARMY MEDICAL CENTER Lorie Southerland 12 Bassett Street Fort Bragg, NC 28307-5000 (910) 432-1486 [email protected]

Ohio CINCINNATI VA MEDICAL CENTER Karrie Hagan 3200 Vine Street Cincinnati, OH 45220 (513) 475-6571 [email protected] WRIGHT-PATTERSON MEDICAL CENTER I & II Karen Healea 415 Schlatter Drive Wright-Patterson AFB, OH 45433-1144 (937) 257-0855 [email protected]

Pennsylvania VA PITTSBURGH HEALTHCARE SYSTEM Heather Frantz VA Pittsburgh Healthcare System University Drive C, Bldg 33 Pittsburgh, PA 15240 (412) 360-2030 [email protected]

Tennessee TENNESSEE VALLEY HEALTHCARE SYSTEM Becky Wood 3400 Lebanon Pike Murfreesboro, TN 37129 (615) 225-5758 [email protected]

Utah SALT LAKE CITY VA HEALTH CARE SYSTEM Quinn Kiger-Good 690 S. Valdez Dr. Salt Lake City, UT 84148 (801) 588-5900 [email protected]

Washington MADIGAN ARMY MEDICAL CENTER Jodi Land 9999 Wilson Avenue Joint Base LewisMcChord, WA 98433 (253) 964-9283 [email protected] VA PUGET SOUND HEALTHCARE SYSTEM Stephanie Toepp 1660 South Columbian Way Seattle, WA 98108 (206) 768-5353 [email protected]

Germany LANDSTUHL REGIONAL MEDICAL CENTER I & II Vivian Wilson CMR 402 APO, AE 09180 (011) 49-6371-9464-7430 (from U.S.) [email protected]

United Kingdom QUEEN ELIZABETH HOSPITAL AT BIRMINGHAM Patrick Hogan Mindelsohn Way Queen Elizabeth Hospital Birmingham England, B15 2TH 0121-472-6217 [email protected]

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The U.S. Department of Veterans Affairs This listing for the U.S. Department of Veterans Affairs is correct to the best of our knowledge as of December 2016. We used the information available from the United States Department of Veterans Affairs (VA) (www.va.gov), in a booklet available at www1.va.gov/OPA/vadocs/current_benefits.asp. This booklet, Federal Benefits for Veterans and Dependents, offers the full listing of VA facilities and other important information for veterans. The list below reflects the healthcare facilities sites for veterans contained in the booklet. For corrections or updates, please contact the Department of Veterans Affairs. The information in the booklet notes: Patients should call the telephone numbers listed to obtain clinic hours of operation and services. The following symbols indicate that additional programs are available at medicalcenters: * for nursing-home care units; # for domiciliaries (Domiciliary care provides rehabilitative and long-term healthcare for veterans who require minimal medical care but do not need the skilled nursing services provided in nursing homes. A domiciliary also provides rehabilitative care for veterans who are homeless.) Please send address and telephone number updates or corrections to: Federal Benefits for Veterans and Dependents (80D) 810 Vermont Avenue, NW, Washington, D.C. 20420 The locations in the listing below are arranged alphabetically by state.

Alabama MEDICAL CENTERS: 2400 Hospital Road Tuskegee, AL 36083 (334) 727-0550 (800) 214-8387 700 S. 19th Street Birmingham, AL 35233 (205) 933-8101 215 Perry Hill Road Montgomery, AL 36109 (334) 272-4670 (800) 214-8387 3701 Loop Road East Tuscaloosa, AL 35404 (205) 554-2000 (888) 269-3045

Alaska MEDICAL CENTER: Alaska VA Healthcare System and Regional Office 1201 North Muldoon Road Anchorage, AK 99504 (907) 257-4700 (888) 353-7574 BENEFITS OFFICE: 709 West 9th Street, Suite 150 Juneau, AK 99801 (907) 796-4300 (907) 796-4301 (FAX)

American Samoa BENEFITS OFFICE: PO Box 982942 Pago Pago, AS 96799 (684) 699-3760 (684) 699-3764 (FAX)

Arizona MEDICAL CENTERS: 650 East Indian School Road Phoenix, AZ 85012 (602) 277-5551 (800) 554-7174 3601 S. 6th Avenue Tucson, AZ 85723 (520) 792-1450 (800) 470-8262 #500 Highway 89 North Prescott, AZ 86313 (928) 445-4860 (800) 949-1005

MEDICAL CENTERS: 4300 W. 7th Street Little Rock, AR 72205 (501) 257-1000 Central Arkansas Veterans Healthcare System #2200 Fort Roots Drive North Little Rock, AR 72114 (501) 257-1000 1100 N. College Avenue Fayetteville, AR 72703 (479) 582-7152 (479) 251-1823 REGIONAL OFFICE: 2200 Fort Roots Drive North Little Rock, AR 72114 (800) 827-1000

California MEDICAL CENTERS: 2615 E. Clinton Avenue Fresno, CA 93703 (559) 225-6100 Northern California Health Care System 150 Muir Road Martinez, CA 94553 (925) 372-2000 (925) 372-2000 Loma Linda Health Care System 11201 Benton Street Loma Linda, CA 92357 (909) 825-7084 (800) 741-8387 Greater Los Angeles Health Care System 11301 Wilshire Boulevard Los Angeles, CA 90073 (310) 478-3711 Palo Alto Health Care System 4951 Arroyo Road Livermore, CA 94550 (925) 373-4700 San Diego Health Care System 3350 La Jolla Village Drive San Diego, CA 92161 (858) 552-8585 (800) 331-8387

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Long Beach Health Care System 5901 E. 7th Street Long Beach, CA 90822 (562) 826-8000 (888) 769-8387 #795 Willow Road Menlo Park, CA 94025 (650) 614-9997 3801 Miranda Avenue Palo Alto, CA 94304 (650) 493-5000 (800) 455-0057 10535 Hospital Way Mather, CA 95655 (916) 843-7000 (800) 382-8387

Colorado MEDICAL CENTERS: VA Eastern Colorado Health Care System 1055 Clermont Street Denver, CO 80220 (303) 399-8020 155 Van Gordon Street Lakewood, CO 80228 (303) 914-2680 2472 Patterson Road, Unit 16 Grand Junction, CO 81505 (970) 245-4156 (970) 245-7623 REGIONAL OFFICE: 789 Sherman Street, Suite 570 Denver, CO 80225 (303) 577-5207 (303) 860-7614

Connecticut MEDICAL CENTERS: Connecticut Health Care System 950 Campbell Avenue West Haven, CT 06516 (203) 932-5711 555 Willard Avenue Newington, CT 06111 (860) 666-6951 REGIONAL OFFICE: Hartford Building 2E, Room 5137 555 Willard Avenue Newington, CT 06111 (860) 666-6951

Delaware Medical Center: 1601 Kirkwood Highway Wilmington, DE 19805

(302) 994-2511 (800) 461-8262 REGIONAL OFFICE: 1601 Kirkwood Highway Wilmington, DE 19805 (302) 994-2511 (800) 461-8262

District of Columbia MEDICAL CENTER: 50 Irving Street, NW Washington, D.C. 20422 (202) 745-8000 (877) 328-2621

Florida MEDICAL CENTERS: 619 S. Marion Avenue Lake City, FL 32025-5808 (386) 755-3016 (800) 308-8387 (386) 754-6336 (FAX) #10000 Bay Pines Boulevard PO Box 5005 Bay Pines, FL 33744 (727) 398-6661 (888) 820-0230 6798 Crosswinds Dr. N Gaslight Square, Bldg A St. Petersburg, FL 33710 (727) 549-3633 (727) 299-6700 13000 Bruce B. Downs Blvd. Tampa, FL 33612 (813) 972-2000 (888) 811-0107 North Florida/South Georgia Veterans Health System 1601 Southwest Archer Road Gainesville, FL 32608-1197 (352) 376-1611 (800) 324-8387 7305 N. Military Trail West Palm Beach, FL 33410 (561) 422-8262 (800) 972-8262

Georgia MEDICAL CENTERS: 1826 Veterans Boulevard Dublin, GA 31021 (478) 272-1210 1670 Clairmont Road Decatur, GA 30033 (404) 321-6111 1 Freedom Way 950 15th Street Downtown Augusta, GA 30904-6285 (706) 733-0188 REGIONAL OFFICE: 1670 Clairmont Road Decatur, GA 30033 (404) 321-6111

Guam GUAM VET CENTER 222 Chalan Santo Papa Reflection Ctr. Ste 201 Hagatna, GU 96910 (671) 472-7160 (671) 472-7162 (FAX)

VA GUAM COMMUNITY BASED OUTPATIENT CLINIC 498 Chalan Palayso Agana Heights, GU 96910 (671) 475-5760

Hawaii MEDICAL CENTER: Pacific Islands Health System 459 Patterson Road Honolulu, HI 96819-1522 (808) 433-0600 (800) 214-1306

Idaho MEDICAL CENTER: 444 W. Fort Street Boise, ID 83702-4531 (208) 422-1000

Illinois MEDICAL CENTERS: 3001 Green Bay Road North Chicago, IL 60064 (847) 688-1900 (800) 393-0865 Edward Hines, Jr. VA Hospital 5000 South 5th Avenue Hines, IL 60141 (708) 202-8387 VA Illiana Health Care System 1900 E. Main Street Danville, IL 61832 (217) 554-3000 (800) 320-8387 Jesse Brown VA Hospital 820 S. Damen Avenue Chicago, IL 60612 (312) 569-8387 (888) 569-5282 REGIONAL OFFICE: 2122 W. Taylor Street Chicago, IL 60612 (800) 827-1000

Indiana MEDICAL CENTERS: 1700 E. 38th Street Marion, IN 46953 (765) 674-3321 (800) 360-8387 Northern Indiana Health Care System 2121 Lake Avenue Fort Wayne, IN 46805 (260) 426-5431 (800) 360-8387 1481 W. 10th Street Indianapolis, IN 46202 (317) 554-0000 REGIONAL OFFICE: 575 N. Pennsylvania Street Indianapolis, IN 46204 (800) 827-1000

Iowa MEDICAL CENTERS: 601 Highway 6 West Iowa City, IA 52246 (319) 338-0581 (800) 637-0128 Central Iowa Health Care System #3600 30th Street Des Moines, IA 50310-5774 (800) 294-8387 (515) 699-5999

1515 W. Pleasant Street Knoxville, IA 50138 641-828-5019 (641) 828-5019 (515) 699-5862 (FAX)

Kansas MEDICAL CENTERS: 5500 E. Kellogg Wichita, KS 67218 (316) 685-2221 (888) 878-6881 2200 SW Gage Boulevard Topeka, KS 66622 (785) 350-3111 (800) 574-8387 EASTERN KANSAS HEALTH CARE SYSTEM #4101 S. 4th Street Trafficway Leavenworth, KS 66048 (913) 682-2000 (800) 952-8387 REGIONAL OFFICE: Robert J. Dole Regional Office 5500 E. Kellogg Avenue Wichita, KS 67218 (316) 265-2221 (888) 878-6881

Kentucky MEDICAL CENTERS: (800) Zorn Avenue Louisville, KY 40206 (502) 287-4000 (800) 376-8387 1101 Veterans Drive Lexington, KY 40502 (859) 281-4900 (859) 233-4511

Louisiana MEDICAL CENTER: 1601 Perido Street New Orleans, LA 70112 (800) 935-8387 510 E. Stoner Avenue Shreveport, LA 71101 (318) 221-8411

Maine MEDICAL CENTER: 1 VA Center Augusta, ME 4330 (207) 623-8411 877-421-8263

Maryland MEDICAL CENTERS: Rehabilitation & Extended Care 3900 Loch Raven Boulevard Baltimore, MD 21218 (410) 605-7000 (410) 605-7900 (FAX) Building 5H Perry Point, MD 21902 (410) 642-2411 (800) 949-1003 Maryland Health Care System 10 N. Green Street Baltimore, MD 21201 (410) 605-7000 (800) 463-6295

Massachusetts

Missouri

New Mexico

MEDICAL CENTERS: 940 Belmont Street Brockton, MA 02301 (508) 583-4500 (800) 865-3384 150 S. Huntington Avenue Boston, MA 02130 (617) 232-9500 (800) 865-3384 1400 VFW Parkway West Roxbury, MA 02132 (617) 323-7700 (800) 865-3384 421 N. Main Street Leeds, MA 01053 (413) 584-4040 200 Springs Road Bedford, MA 01730 (781) 687-2000 (800) 838-6331

MEDICAL CENTERS: 4801 Linwood Boulevard Kansas City, MO 64128 (816) 861-4700 (800) Hospital Drive Columbia, MO 65201 (573) 814-6000 BENEFITS OFFICES: 4801 Linwood Boulevard Kansas City, MO 64128 (816) 861-4700 1500 N. Westwood Boulevard Poplar Bluff, MO 63901 (573) 686-4151 (888) 557-8262 1 Jefferson Barracks Drive Saint Louis, MO 63125 (314) 652-4100 (800) 228-5459

MEDICAL CENTER: 1501 San Pedro Drive, SE Albuquerque, NM 87108 (505) 265-1711 (800) 465-8262

Michigan MEDICAL CENTERS: 4646 John R. Street Detroit, MI 48201 (313) 576-1000 5500 Armstrong Road Battle Creek, MI 49037 (269) 966-5600 (888) 214-1247 1500 Weiss Street Saginaw, MI 48602 (989) 497-2500 2215 Fuller Road Ann Arbor, MI 48105 (734) 769-7100 (800) 361-8387 REGIONAL OFFICES: Patrick V. McNamara Federal Building 477 Michigan Avenue Detroit, MI 48226 (800) 827-1000 (989) 497-2500 325 East H Street Iron Mountain, MI 49801 (906) 774-3300

Minnesota MEDICAL CENTERS: 4801 Veterans Drive St. Cloud, MN 56303 (320) 252-1670 (800) 247-1739 One Veterans Drive Minneapolis, MN 55417 (612) 725-2000 (866) 414-5058

Mississippi MEDICAL CENTERS: 400 Veterans Avenue Biloxi, MS 39531 (228) 523-5000 (800) 296-8872 1500 E. Woodrow Wilson Drive Jackson, MS 39216 (601) 362-4471 REGIONAL OFFICE: 1755 Lelia Dr. Suite 104 Jackson, MS 39216 (601) 965-5727 (601) 965-4023

Montana MEDICAL CENTER: Montana Health Care System 3687 Veterans Drive PO Box 1500 Fort Harrison, MT 59636 (406) 442-6410 (877) 468-8387

Nebraska MEDICAL CENTERS: VA Nebraska-Western Iowa Health Care System 2201 N. Broadwell Avenue Grand Island, NE 68803-2196 (308) 382-3660 4101 Woolworth Avenue Omaha, NE 68105 (800) 451-5796 REGIONAL OFFICE: 5631 S. 48th Street Lincoln, NE 68516 (800) 827-1000 (800) 451-5796

Nevada MEDICAL CENTER: 6900 North Pecos Road North Las Vegas, NV 89086 702-791-9000

New Hampshire MEDICAL CENTER: 718 Smyth Road Manchester, NH 03104 (603) 624-4366 (800) 892-8384

New Jersey MEDICAL CENTERS: New Jersey Health Care System 385 Tremont Avenue East Orange, NJ 07018 (973) 676-1000 #151 Knollcroft Road Lyons, NJ 07939 (908) 647-0180 REGIONAL OFFICE: 20 Washington Place Newark, NJ 07102 (973) 645-1441

New York MEDICAL CENTERS: 76 Veterans Avenue Bath, NY 14810 (607) 664-4000 (877) 845-3247 400 Fort Hill Avenue Canandaigua, NY 14424 (585) 394-2000 (800) 204-9917 VA New York Harbor Healthcare System (800) Poly Place Brooklyn, NY 11209 (718) 836-6600 465 Westfall Road Rochester, NY 14620 (585) 463-2600 (585) 463-2649 (FAX) 113 Holland Avenue Albany, NY 12208 518-626-5000 (800) 223-4810 79 Middleville Road Northport, NY 11768 (631) 261-4400 130 W. Kingsbridge Road Bronx, NY 10468 (718) 584-9000 423 East 23rd Street (1st Avenue) New York, NY 10010 (212) 686-7500 3495 Bailey Avenue Buffalo, NY 14215 (716) 834-9200 (800) 532-8387 #2094 Albany Post Road Montrose, NY 10548 (914) 737-4400 (800) Irving Avenue Syracuse, NY 13210 315-425-4400 (800) 792-4334 BENEFITS OFFICES: 113 Holland Avenue Albany, NY 12208 (800) 223-4810 518-626-5000 179-00 Linden Blvd Jamaica, NY 11425 (718) 526-1000

North Carolina MEDICAL CENTERS: 2300 Ramsey Street Fayetteville, NC 28301 (910) 488-2120 (800) 771-6106 508 Fulton Street Durham, NC 27705 (919) 286-0411 888-878-6890 1100 Tunnel Road Asheville, NC 28805 (828) 298-7911 1601 Brenner Avenue Salisbury, NC 28144 (704) 638-9000 (800) 469-8262

2101 N. Elm Street Fargo, ND 58102 (800) 410-9723

Ohio MEDICAL CENTERS: 3200 Vine Street Cincinnati, OH 45220 (513) 861-3100 4100 W. 3rd Street Dayton, OH 45428 (937) 268-6511 (800) 368-8262 Louis Stokes Cleveland VA Medical Center 10701 East Boulevard Cleveland, OH 44106 (216) 791-3800 (877) 838-8262 Chillicothe VA Medical Center 17273 State Route 104 Chillicothe, OH 45601 (740) 773-1141 (800) 358-8262 REGIONAL OFFICES: Federal Building 1240 E. 9th Street Cleveland, OH 44199 (800) 368-8262

Oklahoma MEDICAL CENTERS: 921 NE 13th Street Oklahoma City, OK 73104 (405) 456-1000 1011 Honor Heights Drive Muskogee, OK 74401 (918) 577-3000

Oregon MEDICAL CENTERS: 3710 SW U.S. Veterans Hospital Road Portland, OR 97239 (503) 220-8262 (800) 949-1004 913 NW Garden Valley Boulevard Roseburg, OR 97470 (541) 440-1000 (800) 549-8387

Pennsylvania MEDICAL CENTERS: 1700 S. Lincoln Avenue Lebanon, PA 17042 (717) 272-6621 (800) 409-8771 1000 Liberty Avenue Pittsburgh, PA 15222 (800) 827-1000 1400 Black Horse Hill Road Coatesville, PA 19320 (610) 384-7711 (800) 290-6172 3900 Woodland Avenue Philadelphia, PA 19104 (215) 823-5800 (800) 949-1001

North Dakota MEDICAL CENTER: 2101 N. Elm Street Fargo, ND 58102 (800) 410-9723 REGIONAL OFFICE: www.eparent.com/EP MAGAZINE • January 2013 103

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Pittsburgh Health Care System University Drive Pittsburgh, PA 15240 (412) 822-2222 (866) 482-7488 1111 East End Boulevard Wilkes-Barre, PA 18711 (570) 824-3521 (877) 928-2621 2907 Pleasant Valley Boulevard Altoona, PA 16602 (877) 626-2500 135 E. 38th Street Boulevard Erie, PA 16504 (814) 868-8661 (800) 274-8387

Philippines MEDICAL CENTER: Manila Outpatient Clinic 1501 Roxas Boulevard Pasay City, PI 1302 (632) 318-8387 (632) 310-5957 (FAX)

Puerto Rico MEDICAL CENTERS: Victor Rojas II / Zona Industrial Carr. 129 Arecibo, PR 612 (787) 641-7582 ext 28689 (800) 449-8729 (787) 816-1824 (FAX) 10 Casia Street San Juan, PR 00921-3201 (787) 641-7582 (800) 449-8729 BENEFITS OFFICES: Ave. Hostos 345, Carretera 2 Frente al Centro Medico Mayaguez, PR 00680-1507 (787) 265-8805 (787) 265-8825 (FAX)

Rhode Island MEDICAL CENTER: 830 Chalkstone Avenue Providence, RI 02908 (401) 273-7100 (866) 363-4486

South Carolina MEDICAL CENTERS: 109 Bee Street Charleston, SC 29401 (843) 577-5011 (888) 878-6884 6439 Garners Ferry Road Columbia, SC 29209 (803) 776-4000

South Dakota MEDICAL CENTERS: 113 Comanche Road Fort Meade, SD 57741 (605) 347-2511 (800) 743-1070 500 N. 5th Street Hot Springs, SD 57747 (605) 745-2000 (800) 764-5370 REGIONAL OFFICE: 2501 W. 22nd Street Sioux Falls, SD 57105 (605) 336-3230

REGIONAL OFFICE: 501 W. 22nd Street Sioux Falls, SD 57117-5046 605-336-3230

Tennessee MEDICAL CENTERS: VA Tennessee Valley Healthcare System 1310 24th Avenue South Nashville Campus, TN 37212 (615) 327-4751 (800) 228-4973 Alvin C. York Campus 3400 Lebanon Pike Murfreesboro, TN 37129 (615) 867-6000 (800) 876-7093 Corner of Lamont & Veterans Way PO Box 4000 Mountain Home,TN 37684 (423) 926-1171 (877) 573-3529 1030 Jefferson Avenue Memphis, TN 38104 (901) 523-8990

Texas MEDICAL CENTERS: 4500 S. Lancaster Road Dallas, TX 75216 (214) 742-8387 (800) 849-3597 6010 Amarillo Boulevard West Amarillo, TX 79106 (800) 687-8262 (806) 355-9703 El Paso Health Care System 5001 N. Piedras Street El Paso, TX 79930 (915) 564-6100 (800) 672-3782 South Texas Health Care System 7400 Merton Minter Boulevard San Antonio, TX 78229 (210) 617-5300 (877) 469-5300 4500 S. Lancaster Road Dallas, TX 75216 (214) 742-8387 (800) 849-3597 (214) 857-1171 1901 Veterans Memorial Drive, Room 5G38 [BRB] Temple, TX 76504-7451 254-778-4811 (800) 423-2111 4800 Memorial Drive Waco, TX 76711 (254) 752-6581 (800) 423-2111 3600 Memorial Boulevard Kerrville, TX 78028 (830) 896-2020 (866) 487-7653 2002 Holcombe Boulevard Houston, TX 77030 (713) 791-1414 (800) 553-2278 North Texas Health Care System 1201 East Ninth Street Bonham, TX 75418 (800) 924-8387 (800) 924-8387 (903) 583-6692 (FAX)

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300 W. Rosedale Street Fort Worth, TX 76104-4856 (800) 827-1000 (800) 443-9672 BENEFITS OFFICES: Taylor County Plaza Building, Suite 103 400 Oak Street Abilene, TX 79602 (325) 674-1216 (325) 674-1340 (FAX)

Utah MEDICAL CENTER: VA Salt Lake City Health System 500 Foothill Drive Salt Lake City, UT 84148 (801) 582-1565 REGIONAL OFFICE: 550 Foothill Drive Salt Lake City, UT 84158 (801) 582-1565

Vermont MEDICAL CENTER: 215 N. Main Street 163 Veterans Drive (GPS) White River Junction, VT 05009 (802) 296-5177 (866) 687-8387 REGIONAL OFFICE: 215 N. Main Street 163 Veterans Drive (GPS) White River Junction, VT 05009 (802) 296-5177 (866) 687-8387

Virgin Islands MEDICAL CLINICS: The Village Mall #113 Box 12, RR-02 Kings Hill, VI 00850-4701 (340) 778-5553 (340) 778-5554 (FAX) The Village Mall RR 2 Box 10553 Kingshill St. Croix, VI 850 (340) 778-5553 877-927-8387 (340) 778-5545 (FAX)

Virginia MEDICAL CENTERS: 100 Emancipation Drive Hampton, VA 23667 (757) 722-9961 1201 Broad Rock Boulevard Richmond, VA 23249 (804) 675-5000 1970 Roanoke Boulevard Salem, VA 24153 (540) 982-2463 (888) 982-2463

Washington MEDICAL CENTERS: Puget Sound Health Care System 1660 S. Columbian Way Seattle, WA 98108 (206) 762-1010 (800) 329-8387 4815 N. Assembly Street Spokane, WA 99205 (509) 434-7000 (800) 325-7940 9600 Veterans Drive, Seattle, WA 98108 (253) 582-8440 (800) 329-8387 77 Wainwright Drive Walla Walla, WA 99362 (509) 525-5200

(888) 687-8863

West Virginia MEDICAL CENTERS: 1 Medical Center Drive Clarksburg, WV 26301 (304) 623-3461 (800) 733-0512 1540 Spring Valley Drive Huntington, WV 25704 (304) 429-6741 200 Veterans Avenue Beckley, WV 25801 (304) 255-2121 (877) 902-5142 #510 Butler Avenue Martinsburg, WV 25405 (304) 263-0811 (800) 817-3807

Wisconsin MEDICAL CENTERS: 2500 Overlook Terrace Madison, WI 53705 (608) 256-1901 (888) 478-8321 500 E. Veterans Street Tomah, WI 54660 (608) 372-3971 #5000 W. National Avenue Milwaukee, WI 53705 414-384-2000

Wyoming MEDICAL CENTERS: 1898 Fort Road Sheridan, WY 82801 (307) 672-3473 (866) 822-6714 2360 E. Pershing Boulevard Cheyenne, WY 82001 (307) 778-7550 (888) 483-9127

Military

Family Organizations Below you will find a list of organizations that might be of interest to military families with members with disabilities. We are adding new organizations and web links regularly, but if you have a favorite organization or web link that has proven helpful in the past, please let us know so we can add that new organization or web link. Please send the information to the military editor at EP magazine at [email protected] The listings are not all inclusive and are provided as a guide only. This listing is oriented to the families of the men and women who serve in defense of America’s freedoms. As a result, the Department of Defense organizations are listed first. The second section contains organizations sponsored by agencies within the Federal Government. The last section, titled Other Helpful Organizations, contains private organizations of interest to our military families. This section may contain state agencies and organizations. Editor’s Note: The appearance of these hyperlinks does not constitute endorsement by Exceptional Parent magazine of any Website or the information, products, or services contained therein. Exceptional Parent magazine does not exercise any editorial control over the information you may find at these locations. These links are provided consistent with our goal of providing the most current and accurate information available to the extent we are able This directory is current as of December 2016.

Department of Defense (DoD)

United States Navy Websites

United States Air Force Websites

Other U.S. Government Websites

Other Helpful Organizations Websites

The Websites in this section are sponsored by organizations within the Department of Defense.

U.S. NAVY www.navy.mil/swf/index.asp

U.S. AIR FORCE HOMEPAGE www.airforce.com

U.S. NAVY EXCEPTIONAL FAMILY MEMBER PROGRAM (866) U-ASK-NPC www.public.navy.mil/bupersnpc/support/efm/Pages/default.a spx

AIR FORCE AID SOCIETY, INC. (703) 972-2650 www.afas.org

The Websites below are websites sponsored by various agencies within the United States Government.

The Websites below are additional site that provide valuable information to military families.

USA.GOV - GOVERNMENT MADE EASY 1-800-333-4636 http://www.usa.gov//

FISHER HOUSE (888) 294-8560 www.fisherhouse.org

MILITARYHOMEFRONT (800) 342-9647 www.militaryhomefront.dod.mil/ MILITARY ONESOURCE www.militaryonesource.mil/ THE DEPARTMENT OF DEFENSE MILITARY HEALTH CARE SYSTEM, TRICARE (800) 600-9332 www.health.mil/ OFFICE OF THE ASSISTANT SECRETARY OF DEFENSE RESERVE AFFAIRS (314) 592-1034 ra.defense.gov NATIONAL GUARD FAMILY PROGRAM www.jointservicessupport.org/fp/ (703) 607-5411

United States Army Websites U.S. ARMY www.army.mil/ ARMY EMERGENCY RELIEF (703) 428-0000 www.aerhq.org U.S. ARMY WOUNDED WARRIOR PROGRAM (AW2) 904.296.7350 www.support.woundedwarriorproj ect.org

NAVY MARINE CORPS RELIEF SOCIETY (703) 696-4904 nmcrs.org

United States Marine Corps Websites U.S. MARINE CORPS (760) 763-3512 www.marines.mil

U.S. Department of Homeland Security United States Coast Guard Websites U.S. COAST GUARD HOME PAGE www.uscg.mil/ U.S. COAST GUARD OFFICE OF WORK-LIFE SPECIAL NEEDS www.uscg.mil/worklife/ special_needs.asp COAST GUARD MORALE, WELL-BEING, AND RECREATION (MWR) www.uscg.mil/mwr/

DISABILITYINFO.GOV www.disabilityinfo.gov/ U.S. DEPARTMENT OF JUSTICE AMERICANS WITH DISABILITIES ACT (ADA) (800) 514-0301 www.ada.gov/ BUILDING THE LEGACY: IDEA 2004 idea.ed.gov/

U.S. MARINE CORPS MANPOWER AND RESERVE AFFAIRS HOMEPAGE Wounded Warrior Regiment (800) 368-5718 www.manpower.usmc.mil

SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL SECURITY INCOME HOME PAGE (800) 772-1213 www.ssa.gov/pgm/links_ ssi.htm U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES CENTERS FOR MEDICARE AND MEDICAID SERVICES www.cms.hhs.gov/

NAVY MARINE CORPS RELIEF SOCIETY (703) 696-4904 nmcrs.org

CENTER FOR PARENT INFORMATION AND RESOURCES www.parentcenterhub.org/

U.S. MARINE CORPS COMMUNITY SERVICES (703) 784-3941 (703) 784-3942 (703) 784-3943 www.usmc-mccs.org

INTREPID MUSEUM-INTREPID FALLEN HEROES FUND (800) 340-HERO (4376) www.fallenheroesfund.org MILITARY CHILD EDUCATION COALITION (MCEC) (254) 953-1923 www.militarychild.org READING FOR THE BLIND AND DYSLEXIC (866) 221-4792 www.rfbd.org SPECIALIZED TRAINING OF MILITARY PARENTS (STOMP) (253) 565-2266 www.stompproject.org WOUNDED WARRIOR PROJECT (Not The U.S. Army’s Wounded Warrior Program) (904) 296-7350 www.woundedwarrior project.org

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PRODUCTS AND SERVICES AQUATICS

(North Carolina)

(Pennsylvania)

(New Hampshire)

TASKS GALORE PUBLISHING INC.

HMS SCHOOL FOR CHILDREN WITH CEREBRAL PALSY

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

ASSISTIVE TECHNOLOGY (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

AUGMENTATIVE COMMUNICATION (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

AUTISM (Massachusetts)

EVERGREEN CENTER 345 Fortune Boulevard Milford, MA 01757 P: 508-478-2631 F: 508-634-3251 E: [email protected] www.evergreenctr.org The Evergreen Center provides living and learning environments for persons with autism and intellectual and developmental disabilities including physical disabilities, behavior disorders and complex health needs. See our ad on page 13 (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

106 January 2017 • EP MAGAZINE/www.eparent.com

4909 Old Elizabeth Road Raleigh, NC 27616 P: 866-788-2757 F: 919-789-8256 E: [email protected] www.tasksgalore.com Offering parents and professionals practical resources to help students with developmental disabilities become more independent.

4400 Baltimore Avenue Philadelphia, PA 19104 P: 215-222-2566 F: 215-222-1889 www.hmsschool.com A residential school for students up to age 21, who have severe, multiple disabilities. See our ad on page 35

(Pennsylvania)

(Pennsylvania)

VALLEY FORGE EDUCATIONAL SERVICES

VALLEY FORGE EDUCATIONAL SERVICES

1777 North Valley Road Malvern, PA 19355 P: 610-296-6725 F: 610-296-6530 E: [email protected] www.vfes.net Provides services and programs for children and young adults, 2–21 years of age, with special needs — The Luma Center for Development and Learning, Summer Matters and The Vanguard School.

1777 North Valley Road Malvern, PA 19355 P: 610-296-6725 F: 610-296-6530 E: [email protected] www.vfes.net Provides services and programs for children and young adults, 2–21 years of age, with special needs — The Luma Center for Development and Learning, Summer Matters and The Vanguard School.

BICYCLES/TRICYCLES (Massachusetts)

EQUIPMENT SHOP, INC. PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com Specializing in providing Tricycle Foot Pedal Attachments and equipment for oral-motor therapy including Flexi Cut Cups and Maroon Spoons.

EDUCATION (New Hampshire)

Services

EVERGREEN CENTER 345 Fortune Boulevard Milford, MA 01757 P: 508-478-2631 F: 508-634-3251 E: [email protected] www.evergreenctr.org The Evergreen Center provides living and learning environments for persons with autism and intellectual and developmental disabilities including physical disabilities, behavior disorders and complex health needs. See our ad on page 13

CROTCHED MOUNTAIN SCHOOL

HOSPITALS / REHAB CENTERS

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

(New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

INCONTINENCE PRODUCTS

NUTRITION / FEEDING

(New Hampshire)

SOSECURE BY DISCOVERY TREKKING

(Massachusetts)

CROTCHED MOUNTAIN SCHOOL

EQUIPMENT SHOP, INC.

919 Ironwood Street Campbell River, BC V9W 3E3 P: 877-551-6577 F: 250-286-6576 E: [email protected] www.SOSecureProducts.com Reusable, long-lasting washable SWIM Diapers. Wide range of sizes. Available in Child, Youth, or Adult styles. Discreet & Effective.

PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com Specializing in providing Tricycle Foot Pedal Attachments and equipment for oral-motor therapy including Flexi Cut Cups and Maroon Spoons.

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

LIFE CARE PLANNER

PUBLISHERS

(Michigan)

(Illinois)

BEACON REHAB

C. THOMAS PUBLISHING, LTD.

114 Felch Street Ann Arbor, MI 48103 P: 800-821-8463 F: 734-665-2584 E: [email protected] www.beaconrehab.com Life care planner, vocational expert, functional capacity evaluator, forensic economist.

PO Box 19265 Springfield, IL 62794-9265 P: 800-258-8980 F: 217-789-9130 E: [email protected] www.ccthomas.com Education and Special Education, Speechlanguage and hearing, Rehabilitation and long-term care. See our ad on page 31

MOBILITY (Florida)

NMEDA

RESIDENTIAL FACILITIES (Massachusetts)

3327 West Bearss Avenue Tampa, FL 33618 P: 866-948-8341 P: 813-264-2697 F: 813-962-8970 www.nmeda.com NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair accessible vehicles.

4 Ice Glen Road Stockbridge, MA 01262 P: 413-298-4926 F: 413-298-5166 E: [email protected] www.riverbrook.org Adult home for women with developmental disabilities within a state of the art integrated community setting.

NON-PROFIT

(Missouri)

(New Hampshire)

YOUTH RALLY COMMITTEE

CROTCHED MOUNTAIN SCHOOL

949 Chestnut Oak Drive (Mailing Only) St. Charles, MO 63303 P: 510-769-9295 F: 877-712-4759 E: [email protected] www.youthrally.org Six day camp held at college campuses in July promoting independence, for 11-17 year olds affected by bowel/bladder disorder.

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

RIVERBROOK RESIDENCE, INC.

SCHOOLS, CAMPS AND RESIDENCES

(Pennsylvania)

HMS SCHOOL FOR CHILDREN WITH CEREBRAL PALSY 4400 Baltimore Avenue Philadelphia, PA 19104 P: 215-222-2566 F: 215-222-1889 www.hmsschool.com A residential school for students up to age 21, who have severe, multiple disabilities. See our ad on page 35 (Washington, DC)

NATIONAL ASSOCIATION OF PRIVATE SPECIAL EDUCATION CENTERS 601 Pennsylvania Avenue, NW, Suite 900 South Building Washington, DC 20004 P: 202-434-8225 F: 202-434-8224 E: [email protected] /[email protected] www.napsec.org Private Nonprofit association created in 1971 to represent private specialized education programs serving individuals with disabilities. See our ad on page 5 (Pennsylvania)

VALLEY FORGE EDUCATIONAL SERVICES 1777 North Valley Road Malvern, PA 19355 P: 610-296-6725 F: 610-296-6530 E: [email protected] www.vfes.net Provides services and programs for children and young adults, 2–21 years of age, with special needs — The Luma Center for Development and Learning, Summer Matters and The Vanguard School.

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PRODUCTS AND SERVICES SPEECH & LANGUAGE

(New Hampshire)

(New Hampshire)

(Massachusetts)

CROTCHED MOUNTAIN SCHOOL

CROTCHED MOUNTAIN SCHOOL

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

Physical: (Massachusetts)

VAN / VAN CONVERSION DEALERS

EQUIPMENT SHOP, INC.

(Florida)

PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com Specializing in providing Tricycle Foot Pedal Attachments and equipment for oral-motor therapy including Flexi Cut Cups and Maroon Spoons.

NMEDA

EQUIPMENT SHOP, INC. PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com Specializing in providing Tricycle Foot Pedal Attachments and equipment for oral-motor therapy including Flexi Cut Cups and Maroon Spoons. (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

SPORTS/RECREATION/FAMILY (Nevada)

AMERICAN SWING PRODUCTS, INC. 9120 Double Diamond Parkway, Suite 1062 Reno, NV 89521 P: 800-433-2573 F: 775-883-2384 E: [email protected] www.americanswing.com We offer adaptive swings and sets that can improve a child’s quality of life.

THERAPY Creative Arts:

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org Speech:

CROTCHED MOUNTAIN SCHOOL

(Massachusetts)

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

EQUIPMENT SHOP, INC.

(Massachusetts)

EQUIPMENT SHOP, INC. PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com Specializing in providing Tricycle Foot Pedal Attachments and equipment for oral-motor therapy including Flexi Cut Cups and Maroon Spoons. 108 January 2017 • EP MAGAZINE/www.eparent.com

VISION AIDS (Kentucky)

(New Hampshire)

(New Hampshire)

Occupational:

3327 West Bearss Avenue Tampa, FL 33618 P: 866-948-8341 P: 813-264-2697 F: 813-962-8970\ www.nmeda.com NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair accessible vehicles.

PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com Specializing in providing equipment for oral-motor therapy (flexi cut cups and maroon spoons) and foot pedal attachments for tricycles.

AMERICAN PRINTING HOUSE FOR THE BLIND, INC. 1839 Frankfort Avenue PO Box 6085 Louisville, KY 40206-0085 P: 800-223-1839 F: 502-899-2284 E: [email protected] www.aph.org Founded in 1858, APH creates educational, workplace and life-style products and services for people who are visually impaired. See our ad on page 31

It takes 68 muscles to hold hands with your dad. How many muscles does it take to walk?

One, your heart. Register today for an MDA Muscle Walk!

®

mda.org/musclewalk

Keep your child safe.

60,000

More than young children end up in emergency departments every year because they got into medicines while their parent or caregiver was not looking.

Always put every medicine and vitamin up and away every time you use it. Also, program the Poison Help number into your phone: 1.800.222.1222.

To learn more, visit UpandAway.org

In partnership with the Centers for Disease Control and Prevention (CDC)