NATIONAL RESOURCES FOR SPECIFIC DISABILITIES
ATTENTION DEFICIT DISORDER
Attention Deficit Disorder
Resource Add Resources
223 Tacoma Avenue South #100
Tacoma WA 98402
(253)759-5085
(253)572-3700 (FAX)
http://www.addresources.org/
Kennedy Krieger Institute Center for Development & Learning
Contact: Care Management
707 North Broadway
Baltimore MD 21205
(888)554-2080
info@kennedykrieger.org.
http://www.kennedykrieger.org/
AUTISM
Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda MD 20814
(800)3AUTISM (328-8476)
(301)657-0881
(301)657-0869 (FAX)
http://www.autism-society.org//
Autism Treatment Center
2080 S. Undermountain Road
Sheffield MA 01275
413)229-2100
(413)229-3202 (FAX)
correspondence@oprion
http://www.autismtreatmentcenter.org/
Autism Speaks
2 Park Avenue 11th Floor
New York NY 10016
(212)252-8584
(212)252-8676
http://www.autismspeaks.org/
BECKWITH-WIEDEMANN SYNDROME
Beckwith-Wiedemann Children Foundation
9031 Cascadia Avenue
Everett WA 98208
(425)338-4610
(425)357-8575 (FAX)
bwcscherly@aol.com
http://www.beckwith0wiedemannsyndrome.org/
CEREBRAL PALSY
UCP (United Cerebral Palsy Associations)
1660 L Street North West, Suite 700
Washington, DC 20036-5602
(800)872-5827
(202)776-0406 (TDD)
(202)776-0414 (FAX)
info@ucp.org
http://www.ucp.org
CHARCOT-MARIE-TOOTH DISEASE
Muscular Dystrophy Association
Bob Mackle
3300 E. Sunrise Drive
Tuscon AZ 85718-3299
(800)572-1717
(520)529-5300 (FAX)
mda@mdausa.org
http://www.mdausa.org
http://www.mdaenespanol.org/
DOWN SYNDROME
Foundation for Children with Down Syndrome
1502 S. Michigan Avenue, 12-3
Joplin MO 64804
(417)626-8603 (PHONE/FAX)
travis7@cableone.net
National Down Syndrome Society
666 Broadway, 8th Floor
New York NY 10012-2317
(800)221-4602
(212)460-9330
(212)979-2873 (FAX)
info@ndss.org
http://www.ndss.org/
DYSAUTONOMIA
National Dysautonomia Research Foundation(NDRF)
P. O. Box 301
Red Wing MN 55066-0301
(651)267-0525
(651)267-0524 (FAX)
ndrf@ndrf.org
http://www.ndrf.org/
DYSLEXIA
The International Dyslexia Association
40 York Road, Suite 400
Towson MD 21204-2044
(800)222-3123
(410)296-0232
(410)321-5069 (FAX)
info@interdys.org
http://www.interdys.org/
EPILEPSY
American Epilepsy Society
342 North Main Street
West Hartford CT 06117-2507
(860)596-7505
(860)586-7550 (FAX)
info@aesnet.org
http://www.aesnet.org
Epilepsy Foundation - National Office
8301 Professional Place East
Landover MD 20785
(301)459-3700
(800)748-8008
(301)577-2684 (FAX)
postmaster@efa.org
http://www.epilepsyfoundation.org
ERB'S PALSY
Brachial Plexus/Erb's Palsy Support
& Informational Network, Inc.
Brenda Copeland-Moore
P.O. Box 23
Larsen WI 54947
(920)836-9587
inationalbpi@powernetonline.com
http://www.nbpepa.org
FAMILIAL DYSAUTONOMIA
Dysautonomia Foundation, Inc.
315 West 39th Street, Suite 701
New York NY 10018
(212)279-1066
(212)279-2066 (FAX)
info@familialdysautonomia.org
http://www.familialdysautonomia.org
FRIEDREICH ATAXIA
Muscular Dystrophy Association
Judith R. Duncan
3300 East Sunrise Drive
Tucson AZ 85718-3299
(800)572-1717
(520)529-2000
(520)529-5300 (FAX)
mda@mdausa.org
http://www.mdausa.org
http://www.mdaenespanol.org
Muscular Dystrophy Family Foundation, Inc.
2330 North Meridian Street
Indianapolis IN 46208-5730
(800)544-1213
(317)923-MDFF (6333)
mdff@mdff.org
http://www.mdff.org
GALACTOSEMIA
Parents of Galactosemic Children, Inc.
1412 Sweet Bay Court
Covington LA 70433
(985)875-3136
http://www.galactosemia.org
HEARING IMPAIRMENTS
American Society for Deaf Children
3820 Hartzdale Drive
Camp Hill PA 17011
(800)942-2732 (V/TDD)
(717)703-0073
(717)909-5599 (FAX)
asdc@deafchildren.org
http://www.deafchildren.org
American Speech, Language, Hearing Association
2200 Research Boulevard
Rockville MD 20850
(800)634-8255
(301)897-5700
(240)333-4705 (FAX)
actioncenter@asha.org
http://www.asha.org
Cochlear Implant Association, Inc.
5335 Wisconsin Avenue, North West
Suite 440
Washington DC 20015
(202)895-2781
(202)895-2782 (FAX)
info@cici.org
http://www.cici.org
HYDROCEPHALUS
Hydrocephalus Association
Pip Marks
Director of Outreach Services
870 Market Street, Suite 705
San Francisco CA 94102
(415)732-7040 (voice)
(888)598-3789 (toll free)
(415)732-7044 (FAX)
info@hydroassoc.org
http://www.hydroassoc.org
National Hydrocephalus Foundation
12413 Centralia Road
Lakewood CA 90715-1623
(562)924-6666
(562)402-3523
(888)857-3434
(562)924-6666 (FAX)
hydrobrat@earthlink.net
http://www.nhfonline.org
KERNICTERUS
Parents of Infants and Children with Kernicterus (PICK)
One West Superior Street
Suite 2410
Chicago IL 60610
Contact: Karen Dixon
(630)881-1695
info@pickonline.org
http://www.PICKonline.org
LEARNING DISABILITIES
Learning Disabilities Association of America
Jane Browning, Executive Director
4156 Library Road
Pittsburgh PA 15234-1349
(412)341-1515
(412)344-0224 (FAX)
National Kidney Foundation
info@Idaamerica.org
http://www.Idaamerica.org
National Center for Learning Disabilities
Dr. Sheldon Horowitz
Director of Professional Services
381 Park Avenue South, Suite 1401
New York NY 10016
(212)545-7510
(888)575-7373
(212)545-9665 (FAX)
help@ncld.org
http://www.Id.org
LONG Q-T SYNDROME
International Long Q-T Syndrome Registry
Jennifer Robinson
601 Elmwood Avenue, Box 653
Rochester NY 14642
(888)543-3469
(585)273-5283 (FAX)
http://www.longqt.org/longqtreg.html
Sudden Arrhythmia Death Syndromes (SADS) Foundation
508 East South Temple, Suite 20
Salt Lake City UT 84102
(800)786-7723
(800)STOP-SAD
(801)531-0937
(801)531-0945 (FAX)
http://www.sads.org
MAPLE SYRUP URINE DISEASE
Maple Syrup Urine Disease Family Support Group
Joyce Brubacher
82 Ravine Road
Powell OH 43065
(740)548-4475
dbulcher@aol.com
http://www.msud-support.org
MENTAL ILLNESS
Federation of Families for Children's Mental Health
Sandra Spencer, Executive Director
9605 Medical Center Drive 280
Rockville MD 20850
(201)403-1901
(201)403-1909 (FAX)
ffcmh@ffcmh.org
http://www.ffcmh.org
Children's Wish Foundation International
8615 Roswell Road
Atlanta GA 30350-1822
(800)323-9474
(770)393-9474
(770)393-0683 (FAX)
iwish@childrenswish.org
http://www.childrenswish.org
METHYLMALONIC ACIDEMIA
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
(914)997-4488
ny639@modimes.org
http://www.marchofdimes.com
MITOCHONDRIAL DISORDERS
United Mitochondrial Disease Foundation
Kara Strittmatter
8085 Saltsburg Road, Suite 201
Pittsburgh PA 15239
(412)793-8077
(412)793-6477 (FAX)
info@umdf.org
http://www.umdf.org
Muscular Dystrophy Association
Bob Mackle, Director of Public Information
3300 East Sunrise Drive
Tucson AZ 85718-3299
(800)572-1717
(520)529-5300 (FAX)
mda@mdausa.org
http://www.mdausa.org
http://www.mdaenespanol.org
Muscular Dystrophy Family Foundation, Inc.
Judith R. Duncan
3951 North Meridan Street
Indianpaolis IN 46208
(317)923-6333
(317)923-6334 (FAX)
mdff@mdff.org
http://www.mdff.org
NEUROLOGICAL DISORDERS
National Institute of Neurological Disorders & Stroke
Building 31, Room 8A-07
31 Center Drive MSC 2540
PO box 5801
Bethesda MD 20824
(800)352-9424
(301)402-2186 (FAX)
braininfo@ninds.nih.gov
http://www.ninds.nih.gov
NEUTROPENIA
Neutropenia SCN
International Registry
Puget Sound Plaza
1325 4th Avenue, Suite 620
Seattle WA 98101-2509
(800)726-4463
(206)543-9749
(206)543-3668 (FAX)
registry@u.washington.edu
http://www.depts.washington.edu/registry
PEDIATRIC CANCER
The Children's Oncology Group (COG)
4600 East West Highway, Suite 600
Bethesda MD 20814-3457
(301)718-0042
(301)718-0047 (FAX)
coginfo@childrensoncologygroup.org
http://www.cord.ca/
PHENYLKETONURIA (PKU)
National Coalition for PKU & Allied Disorders
PO Box 1244
Mansfield MA 02048
(877)996-2723
http://www.pku-allieddisorders.org
National PKU News
Virginia Schuett
6869 Woodlawn Avenue North East
Suite 116
Seattle WA 98115-5469
(206)525-8140
(800)723-9166
(206)525-5023 (FAX)
schuett@pkunews.org
http://www.pkunews.org
PRADER-WILLI SYNDROME
Prader-Willi Foundation
223 Main Street
Port Washington NY 11050
(800)253-7993
(516)944-3173 (FAX)
foundation@prader-willi.inter.net
The Prader-Willi Syndrome Association (USA)
5700 Midnight Pass Road
Sarasota FL 34242
(800)926-4797
(941)312-0400
(941)312-0142 (FAX)
national@pwsausa.org
http://www.pwsausa.org
RARE DISORDERS
National Organization for Rare Disorders (NORD)
PO Box 1968
Danbury CT
(800)999-6673
(203)7400-0100
(203)797-9590 (TDD)
(203)798-2291 (FAX)
orphan@rarediseases.org
http://www.rarediseases.org
SPINAL CORD INJURIES
National Spinal Cord Injury Association
1 Church Street, Suite 600
Bethesda MD 20850
(800)962-9629
(301)214-4006
(301)962-1265 (FAX)
mroth@spinalcord.org
http://www.spinalcord.org
Spinal Muscular Atrophy Families of SMA
PO Box 196
Libertyville IL 60048-0196
(800)886-1762
(847)267-7620
(847)367-7623 (FAX)
info@fsma.org
http://www.fsma.org
STROKE
National Institute of Neurological Disorders & Stroke (NINDS)
PO Box 5801
Bethesda MD 20824
(800)352-9424
(301)496-5751
(301)402-2186 (FAX)
braininfo@ninds.nih.gov
http://www.ninds.nih.gov
SUDDEN INFANT DEATH SYNDROME (SIDS)
National Sids/Infant Death Resource Center
8280 Greensboro Drive
McLean VA 22102
(866)866-7437
(703)821-2098 (FAX)
sids@circlesolutions.com
http://www.sidscenter.org
VISUAL IMPAIRMENTS
American Council of the Blind
Melanie Brunson
1155 15th Street North West
Suite 1004
Washington DC 20005
(800)424-8666
(202)467-5081
(202)467-5085 (FAX)
info@acb.org
http://www.acb.org
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York NY 10001
(800)232-5463
(212)502-7600 (TDD)
(212)502-7777 (FAX)
afbinfo@afb.net
http://www.afb.org
Blind Children's Center
4120 Marathon Street
Los Angeles CA 90029
(800)222-3566
(800)222-3567 (CA only)
(323)664-2153
(323)665-3828 (FAX)
info@blindchildrenscenter.org
http://www.blindchildrenscenter.org
Blind Children's Fund
201 South University
Mt. Pleasant MI 48858
(989)779-9966
(989)779-0015 (FAX)
bcsf@blindchildrensfund.org
http://www.blindchildrensfund.org
Braille Institute of America
741 North Vermont Avenue
Los Angeles CA 90029
(323)663-1111
(800)BRAILLE (272-4553)
(323)663-0867 (FAX)
info@brailleinstitute.org
http://www.braileinstitute.org
National Association for Parents of Children with Visual Impairments
PO Box 317
Watertown MA 02471
(800)562-6265
(617)972-7441
(617)972-7444 (FAX)
napvi@perkins.org
http://www.napvi.org
STATE ASSISTIVE TECHNOLOGY PROGRAMS
OHIO
Assistive Technology of Ohio
445 East Dublin Granville Road
Building L
Worthington OH 43085
Program Director: William Darling, Ph.D.
(614)293-9132
(614)293-9127 (FAX)
darling.12@osu.edu
http://www.atohio.org
TITLE V
OHIO
James Bryant, MD
Bureau of Children with Medical Handicaps
246 N. High Street
PO Box 1603
Columbus OH 43266-1603
(614)466-1549
(614)728-3616 (FAX)
James.bryant@odh.ohio.gov
http://www.odh.ohio.gov/odhPrograms/cmh/bcmh
ALLIANCE FOR TECHNOLOGY ACCESS
OHIO
Easter Seals Technology Resource Center
Kevin Leonard
1133 Edwin C. Moses Blvd., Suite 370
Dayton OH 45408-2094
(937)461-3305
k.leonard@goodwilldayton.org
http://www.trcd.org
PARENT TRAINING & INFORMATION CENTERS
OHIO
OCECD (PTI)
165 West Center Street
Suite 302
Marion OH 43302-3741
(740)382-5452 (VOICE & TDD)
(800)374-2806
(740)383-6421 (FAX)
ocecd@gte.net
http://ocecd.org
Serves: Statewide except SW Region
OCECD (PTI-EARLY CHILDHOOD)
165 West Center St
Suite 302
Marion OH 43302-3741
(740)382-5452 (VOICE & TDD)
(800)374-2806
(740)383-6421 (FAX)
ocecd@gte.net
http://ocecd.org
Serves: Southwest Ohio
Special Education Services
27900 Euclid Avenue
Cleveland OH44132
(216)289-4332
(216)289-9091 (FAX)
aimeegilman@sbcglobal.net
Serves: Cuyahoga County & the Greater Cleveland area
FEDERAL & FEDERALLY FUNDED INFORMATION RESOURCES
ACCESSIBILITY
The Access Board
1331 F Street, NW
Suite 1000, 10th Floor
Washington DC 20004-1111
(202)272-0080 (VOICE)
(202)272-0082
(800)872-2253(VOICE)
(800)993-2822(TTY)
(202)272-0081 (FAX)
info@access-board.gov
http://ww.access-board.gov
DISABILITIES
NICHCY (National Dissemination Center for Children with Disabilities)
PO Box 1492
Washington DC 20013-1492
(800)695-0285 (voice/TDD)
(202)884-8200 (voice/TDD)
(202)884-8441 (FAX)
nichcy@aed.org
http://www.nichcy.org
MENTAL HEALTH
(KEN)National Mental Health Services Center
PO Box 42557
Washington DC 20015
(800)789-2647
(301)984-8796 (FAX)
info@mentalhealth.org
http://www.mentalhealth.samhs.gov
REHABILITATION
NARIC (National Rehabilitation Information Center)
8201 Corporate Drive, Suite 600
Landover MD 20785
(800)346-2742
(301)459-5900 (VOICE)
(301)459-5984 (TTY)
(301)459-4263 (FAX)
naricinfo@heitechservices.com
http://www.naric.com
PARENT TO PARENT PROGRAMS
OHIO
The Family Information Network
(Early Intervention Only)
Ohio Department of Health,
Bureau of Early Intervention Services (BEIS)
246 N. High Street
PO Box 118
Columbus OH 43266-0118
(614)644-8389
MATCHING RESOURCES
Birth Defect Research for Children
Betty Mekdeci
800 Celebration Avenue
Suite 225
Celebration FL 34747
(407)566-8304
(407)566-8341 (FAX)
http://www.birthdefects.org
Easter Seals
National Headquarters
230 W. Monroe Street
Suite 1800
Chicago IL 60606
(312)726-6200 (VOICE)
(312)726-4258 (TDD)
(312)726-1494 (FAX)
http://www.easter-seals.org
Easter Seals Society
1185 Eglinton Avenue E, Suite 706
Toronto ON
CAN M3C-3C6
(416)932-8382
(800)668-6252
(416)696-1035 (FAX)
http://www.easterseals.org
MUMS (Mothers United for Moral Support)
National Parent-to-Parent Network
Julie Gordon
150 Custer Court
Green Bay WI 54301-1243
(877)336-5333 (PARENTS ONLY PLEASE)
(920)336-5333
(920)339-0995 (FAX)
mums@netnet.net
http://www.netnet.net/mums
EARLY INTERVENTION
OHIO
Debbie Cheatham, Part C
Coordinator
Bureau of El Services
State Department of Health
246 North High Street, 5th Floor
PO Box 118
Columbus OH 43266-0118
(614)644-9164
(800)755-4769 (AltPhone1)
(614)728-9163 (FAX)
Debbie.cheatham@odh.ohio.gov
http://www.ohiohelpmegrow.org
Kim Carlson, Assistant
Director & 619 Coordinator
Office of Early Learning & School Readiness
Ohio Department of Education
25 S. Front Street, Mail Stop 305
Columbus, OH 43215-4183
(614)466-0224
(614)728-2338 (FAX)
Kim.carlson@ode.state.oh.us
http://www.ode.state.oh.us/gd/gd.aspx?page=2&TopicRelationID=467
ADAPTIVE RECREATIONS ORGANIZATIONS
CAMPING/OUTDOOR ACTIVITIES
Adaptive Sports Center
PO Box 1639
Crested Butte CO 81224
(866)349-2296
(970)349-5075
(970)3492077 (FAX)
info@adaptivesports.org
http://www.adaptivesports.org
STATE OFFICES OF SPECIAL EDUCATION
OHIO
Ohio Department of Education
Office of Exceptional Children
25 South Front Street
Mail Stop 202
Columbus OH 43215-4183
(614)752-1462
http://www.ode.state.oh.us
THE FEDERATION OF FAMILIES FOR CHILDREN'S METNAL HEALTH
State Organizations, Chapters & Representatives Contact List
OHIO
ATHENS
Southern Consortium for Children (Partner)
Steve Trout
PO Box 956
Athens, OH 45701-0956
(740)593-8293
(740)592-4170 (FAX)
CINCINNATI
Ohio Federation for Children's MH, Inc.- Summit Behavioral Health (State Organization)
Terre Garner, Director
1101 Summit Road
Cincinnati OH 45237
(513)948-3077
(513)761-2427 (FAX)
offcmh1@fuse.net
CANFIELD
First Ohio Chapter - FFCMH
(Chapter)
Chrysanne Mitzel
4505 Quaker Court
Canfield OH 44406
(330)726-9570
(330)726-9031 (FAX)
xuparents@aol.com
CHILLICOTHE
1st Capital FFCMH (Chapter)
Rosemary Hill
2097 Western Avenue, Apt. #602
Chillicothe OH 45601
(740)775-7842
(740)775-2674 (FAX)
Rmh1@adelphia.net
CLEVELAND
Positive Education Program (Chapter)
Valarie Rudar
3100 Euclid Avenue
Cleveland OH 44115-2508
(216)361-4400 ext. 254
(216)361-8600 (FAX)
vrudar@pepcelev.org
http://www.pepcleve.org
UNIVERSITY AFFILIATED PROGRAMS
OHIO
Sonya Oppenheimer, MD, Director
University of Cincinnati UCEDD
Cincinnati Children's Division of
Developmental Disabilities
Children's Hospital Medical Center
MLC 4002, 3333 Burnet Avenue
Cincinnati OH 45229-3039
(513)636-8323
(513)636-7361 (FAX)
Sonya.oppenheimer@cchmc.org
Steven Reiss, PhD, Director
Nisonger Center
Ohio State University
1581 Dodd Drive
357 McCampbell Hall
Columbus OH 43210
(614)292-2390
(614)292-3727 (FAX)
Reiss.7@osu.edu
STATE PROTECTION & ADVOCACY AGENCIES (P&As)
AND THE NATIONAL ASSOCIATION OF PROTECTION AND ADVOCACY SYSTEMS (NAPAS)
OHIO
Ohio Legal Rights Services
(614)466-7264
(614)644-1888
8 East Long Street 5th Floor
50 West Broad Street, Suite 1400
Columbus OH 43215-5923
MKirkman@olrs.state.oh.us
http://olrs.ohio.gov
NATIONAL INFORMATION & ADVOCACY RESOURCES
GENERAL
About Special Kids - Central Office
7275 Shadeland Avenue, Suite 1
Indianapolis IN 46250
(317)257-8683
(800)964-4746 (Toll free)
(317)251-7488 (FAX)
familynetw@aboutspecialkids.org
training@aboutspecialkids.org
http://www.aboutspecialkids.org
Association of University Centers on Disabilities
1010 Wayne Avenue, Suite 920
Silver Spring MD 20910
(301)588-8252
(301588-2842 (FAX)
http://www.aucd.org
Children's Defense Fund
25 E Street, NW
Washington DC 20001
(800)233-1200
(202)628-8787
(202)662-3510 (FAX)
cdfinfo@childrensdefense.org
http://www.childrensdefense.org
Council for Exceptional Children
1110 North Glebe Road
Arlington VA 22201-5704
(703)264-9454
(703)264-1637
service@ce.csped.org
http://www.cec.sped.org
Hidden Miracles Ministry
Directors - Lynn & Barbara McNeely
201 Gayleh Lane
Waxahachie TX 75165
(972)937-6255
hiddenmiracles@sbcglobal.net
http://www.hiddenmiraclesministry.org
Futures & Options for Kids
Theresa Silk Executive Director
1 North End Avenue
New York NY 10282
(212)748-4146
(732)567-5576
(212)748-4148 (FAX)
info@futuresandoptionsforkids.org
March of Dimes
Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
(914)428-7100
askus@marchofdimes.com
http://www.marchofdimes.com
SNAP: Special Needs
Advocate for Parents
3029 Wilshire Boulevard #200
Santa Monica CA 90403
(888)310-9889
(310)452-3759
(310)450-5769 (FAX)
info@snapinfo.org
http://www.snapinfo.org
RESPITE CARE
National Respite Locator Service
Locator Service
800 Eastowne Drive, Suite 105
Chapel Hill NC 27514
(919)490-5577
(919)490-4905 (FAX)
immathers@chtop.org
http://www.chtop.com
SUPPORT
Friends' Health Connection for People
With Medical Conditions and for Caregivers
PO Box 114
New Brunswick NJ 08903
(800)483-7436
(732)418-1811
(732)249-9897 (FAX)
info@friendshealthconnection.org
http://www.friendshealthconnection.org
TOY LENDING & ADAPTIONS
The National Lekotek Center
2001 n. Clybourn Avenue
Chicago IL 60614
(773)528-5766 Toy Resource
(800)366-PLAY Helpline
(773)276-8644 (FAX)
ekotek@ekotek.org
http://www.lekotek.org
TRAVEL
Believe in Tomorrow
National Children's Foundation
(formerly Grant-a-Wish Foundation)
c/o Brian Morrison
6602 Frederick Road
Baltimore MD 21228
(800)933-5470
(410)744-1032
(410)744-1984 (FAX)
info@believeintomorrow.org
http://www.believeintomorrow.org
Children's Wish Foundation International
8615 Roswell Road
Atlanta GA 30350-1822
(800)323-9474
(770)393-9474
(770)393-0683 (FAX)
wish@childrenswish.org
http://www.childrenswish.org
VOCATIONAL REHABILITATION PROGRAMS
OHIO
Rehabilitation Services Commission
400 East Campus View Boulevard
Columbus OH 43235-4604
(800)282-4536
(614)438-1200
MAGAZINES
EP (Exceptional Parent)
www.eparent.com
