NATIONAL RESOURCES FOR SPECIFIC DISABILITIES
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
443-923-3240 (FAX)
info@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 11 th 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
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
800748-8008
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.ncld.org
International Long Q-T Syndrome Registry
Jennifer Robinson
601 Elmwood Avenue, Box 653
Rochester NY 14642
888-543-3469
585-273-5283 (FAX)
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)
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 Meridian Street
Indianapolis 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
203-740-0100
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
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
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
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
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
301-588-2842 (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
