Acoustic Neuroma
Acoustic Neuroma (ANA)
600 Peachtree Parkway
Cummings, GA 30041
(770) 205-8277; Fax (404) 205-0239
Website:http://www.anausa.org
Alzheimer's Disease Alzheimer's Association
919 N. Michigan Ave., Suite 1000
Chicago, Illinois 60611
(800) 272-3900; fax (312) 335-8700
Website:http://www.alz.org
Alzheimer's Disease Education and Referral Center
P.O. Box 8250
Silver Spring, MD 20907-8250
(800) 438-4380; fax (301) 495-3334
Website: http://www.alzheimers.org
French Foundation for Alzheimer Research
11620 Wilshire Blvd.
Los Angeles, CA 90025
(800) 477-2243; fax (310) 479-0516
Website: http://www.jdfaf.org
Amyotrophic Lateral Sclerosis/Lou Gehrig's Disease Amyotrophic Lateral Sclerosis Association
27001 Agoura Rd., Suite 150
Calabasas, CA 91301
(800) 782-4747; fax (818) 340-2060
Website: http://www.alsa.org
Center for Neurologic Study
ALS
9850 Genesee Avenue, Suite 320
La Jolla, CA 92037
(858) 455-5463; fax (619) 455-5463
Website: http://www.cnsonline.org
Email
Les Turner Amyotrophic Lateral Sclerosis Foundation
8142 North Lawndale Avenue
Skokie, IL 60076
(888) ALS-1107; fax (847) 679-9109
Website: http://www.lesturneruals.org
Norris ALS Research Center
California Pacific Medical Center
2324 Sacramento Street, Suite 111
San Francisco, CA 94115
(415) 563-4321
Angelman Syndrome Angelman Syndrome Foundation, Inc.
414 Plaza Dr. Suite 209
Westmont, IL 60559
1-800-432-6435
Website: http://www.angelman.org
Anorexia Nervosa National Association of Anorexia Nervosa and Associated Disorders
Box 7
Highland Park, Ill. 60035
(312) 908-5010; fax (312) 908-5010
Anxiety Disorders Anxiety Disorders Association of America
8730 Georgia Avenue, Suite 600
Silver Spring, MD 20910
(240) 485-1001
Website: http://www.adaa.org
Aphasia National Aphasia Association
156 Fifth Avenue, Suite 707
New York, NY 10010
(212)255-4329; (800) 922-4NAA
Website: http://www.aphasia.org
Ataxia National Ataxia Foundation
2600 Fembrook Lane Suite 119
Minneapolis, MN 55447-4752
(763) 553-0020
Website: http://www.ataxia.org
Autism Autism Society of America
7910 Woodmont Avenue, Suite 650
Bethesda, Md 20814-3015
(301) 657-0881; fax (301) 657-0869
Website: http://www.autism-society.org
New Jersey Center for Outreach &
Services for the Autism Community
1450 Parkside Avenue, Suite 22
Ewing, NJ 08638
(609) 883-8100; fax (609) 883-5509
Website: http://members.aol.com/njautism
Batten Disease
Batten Disease Support and Research Association
120 Humphries Drive Suite 2
Reynoldsburg, OH 43068
(800) 448-4570; fax (614)445-4191
Website: http://www.bdsra.org
Institute for Basic Research in Developmental Disabilities
Batten Disease
1050 Forest Hill Road
State Island, NY 10314-6399
(718) 494-0600
Website: http://www.omr.state.ny.us
Birth Defects March of Dimes
Preventing Birth Defects
1275 Mamaroneck Avenue
White Plains, NY 10605
(914)428-7100
Website: http://www.modimes.org
Brain Brain Information Service
UCLA School of Medicine
Los Angeles, CA 90024
(310) 825-3417; fax (310)206-3499
Website: http://www.sleephomepages.org
Family Caregiver Alliance for Brain-Damaged Adults
425 Bush Street, Suite 500
San Francisco, CA 94108
(415) 434-3388; fax (415) 434-3580
Website: http://www.caregivers.org
National Foundation for Brain Research
Decade of the Brain
1250 Twenty-fourth Street, NW
Suite 300
Washington, DC 20037
(202) 293-5453
Website: http://www.brainnet.org
University of California, Los Angeles Brain Research Institute
UCLA School of Medicine
Center For The Health Sciences
20833 Le Conte Avenue
Los Angeles, CA 90024-1761
(310) 825-3417; fax (310) 206-3499
National Brain Tumor Foundation (NBTF)
414 Thirteenth Street, Suite 700
Oakland, CA 94612-2603
(800) 934-CURE; (510)839-9777
Website: http://www.braintumor.org
American Brain Tumor Association
2720 River Road #146
Des Plaines, IL 60018
(847)827-9910
Website: http://www.abta.org
Blepharospasm Benign Essential Blepharospasm Researach Foundation, Inc.
P.O. Box 12468
Beaumont, TX 77726-2468
(409) 832-0788; fax (409)832-0898
Website: http://www.blepharospasm.org
United Cerebral Palsy Association, Inc,
1522 "K" Street, NW, Suite 1112
Washington, DC 20005
(202) 842-1266
Website: http://www.ucpa.org
Charcot-Marine Tooth Disease
Charcot-Marine-Tooth Association
2700 Chestnut Parkway
Chester, PA 19013
(610) 499-7486; fax (610) 499-7487
Website: http://www.charcot-marine-tooth.org
CMT International
One Springbank Drive
St. Catharines, Ontario
Canada L2S 2K1
(905) 687-3630; fax (905) 687-8753
Website: http://www.cmtint.org
Crippling Disorders National Easter Seal Society
Crippling Disorders
230 West Monroe Street
Suite 1800
Chicago, IL 60606-4802
(312) 726-6200
Website: http://www.easter-seals.org
Dizziness
Vestibular Disorders Association
(Dizziness)
P.O. Box 4467
Portland, OR 97208-4467
(503) 229-7705; fax (503) 229-8064
Website: http://www.teleport.com/''veda
Down Syndorme National Down Syndrome Congress
1605 Chantilly Drive, Suite 250
Atlanta, GA 30324
(800) 232-6372; fax: same as phone
Website: http://www.members.carol.net/ndsc
Dysautonomia, Familial Dysautonomia Foundation, Inc.
20 East 46th Street, Room 302
New York, NY 10017
(212) 949-6644; fax (212)682-7625
Dystonia Medical Research Foundation (DMRF)
One East Wacker Drive, Suite 2900
Chicago, IL 60601-2001
(312) 755-0198; fax (312) 803-0138
Website: http://www.dystonia-foundation.org
Epilepsy
Epilepsy Foundation of America
4351 Garden City Drive
Landover, MD 20785
(301) 459-3700; fax (301)577-2684
Website: http://www.efa.org
Guillain-Barre Syndrome
Guillain-Barre Syndrome Foundation
P.O. Box 262
Wynnewood, PA 19096
(610) 667-0131
Website: http://www.webmast.com/gbs
Headache
American Council for Headache Education
(ACHE)
19 Mantua Road
Mt. Royal, NJ 08061
(800) 255-ACHE
Website: http://www.achenet.org
National Headache Foundation
428 West St. James Place, 2nd Floor
Chicago, IL 60614-2750
(773) 388-6399
Website: http://www.headaches.org
Head Injury Brain Injury Assoc.
105 North Alfred Street
Alexandria, VA 22314
(703) 236-6000; fax (703)236-6001
Website: http://www.biausa.org
Huntington's Disease Harvard Brain Tissue Resource Center (BTRC)
McLean Hospital
115 Mill Street
Belmont, MA 02178-9983
(800) 272-4622; fax (617) 855-3199
Website: http://www.brainbank,mclean.org:8080
Hereditary Disease Foundation
11400 West Olympic Blvd. Suite 855
Los Angeles, CA 90064-1560
(310) 575-9656
Website: http://www.hdfoundation.org
Huntington's Disease Society of America
(HDSA)
158 W. 29th Street, 7th Floor
New York, NY 10001-5300
(212) 242-1968; fax (212) 243-2443
Huntington Society of Canada
13 Water Street North
Suite3, Box 1269
Cambridge, Ontario NIR7G6
(519) 622-1002; fax (519)622-7370
Website: http://www.hsc-ca.org
Hydrocephalus Guardians of Hydrocephalus Research Foundation
2618 Avenue Z
Brooklyn, NY 11235
(718) 743-4473
Hydrocephalus Association
870 Market Street, Suite 955
San Francisco, CA 94102
(415) 732-7040
Website: http://www.hydroassoc.org
Language Disorders
American Speech-Language-Hearing Association
1080l Rockville Pike
Rockville, MD 20852
(301) 897-5700; fax (301)571-0457
Website: http://www.asha.org
Learning Disabilities Children and Adults with Attention Deficit Disorders
8181 Professional Place, Suite 20
Landover MD, 20785
(301) 306-7070
Website: http://www.chadd.org
Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA 15234-1349
(412) 341-1515; fax (412) 344-0224
Website: http://www.ldanatl.org
National Center for Learning Disabilities
381 Park Avenue South, Suite 1401
New York, NY 10016
(212) 545-7510; fax (212)545-9665
Website: http://www.ncld.org
Leukodystrophy United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
(815) 895-3211; fax (815)895-2432
Website: http://www.ulf.org
Malignant Hyperthermia
Malignant Hyperthermia Association of the United States
P.O. Box 1069
Sherburne, NY 13460-1069
(607) 674-790l; fax (607) 674-7910
Website:www.mha.org
National Alliance for the Mentally Ill
2101 Wilson Boulevard, Suite 302
Arlington, VA 2220l
(800) 950-6264; fax (703) 524-9094
Website: http://www.nami.org
National Mental Health Association
1021 Prince Street
Alexandria, VA 22314-2971
(703) 684-7722; fax (703) 684-5968
Website: http://www.nmha.org
Mental Retardation ARC National Headquarters
(Mental Retardation)
500 East Border Street, Suite 300
Arlington, TX 76010
(817) 261-6003; fax (817) 277-3491
Website: http://www.thearc.org/welcome.html
Moebius Syndrome Moebius Syndrome Foundation
PO Box 147
Pilot Grove, MO 65276
(660) 834-3406
Website:Moebius Syndrome Foundation
Mucopolysaccharidoses National MPS Society, Inc.
17 Kraemer Street
Hicksville, NY 11801
(610) 942-0100
Multiple Sclerosis Multiple Sclerosis Association of America
706 haddonfield Road
Cherry Hill, NJ 08002
(800) 532-7667; fax (609)661-9797
Website: http://www.msaa.com
Multiple Sclerosis Foundation, Inc.
Program Services
6350 N. Andrews Avenue
Fort Lauderdale, FL 33309
(954) 776-6805; fax (954) 938-8708
Website: http://www.msfacts.org
National Multiple Sclerosis Society
733 Third Avenue, 6th floor
New York, NY 10017-3288
(212) 986-3240
Website: www.nmss.org
Muscular Dystrophy Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson AZ, 85718-3208
(520) 529-2000
Website: http://www.mdausa.org
Myasthenia Gravis Myasthenia Gravis Foundation
Oklahoma Chapter
6465 S. Yale, Suite 950
Tulsa, OK 74136
(918) 494-4951
Website:www.myasthenia.org
Myasthenia Gravis Foundation of America
1821 University Ave W, Ste S256
St. Paul, MN, 55104-2897
(800)541-5454
(651)917-6256
(651)917-1835, fax
Website: http://www.myasthenia.org
Myoclonus Myoclonus Research Foundation, Inc.
200 Old Palisade Road
Fort Lee, NJ 07024
(201) 585-0770
Website: http://www.myoclonus.com
National Pediatric Myoclonus Center
Department of Neurology, Childrens National Medical Center
111 Michigan Avenue, NW.
Washington, DC 20010-2970
(202) 884-3494
Narcolepsy
American Sleep Disorders Association
1610-14th Street NW, Suite 300
Rochester, MN 55901
(507) 287-6006; fax (507) 287-6008
Website: http://www.asda.org
Neurofibromatosis National Neurofibromatosis Foundation
95 Pine Street, 16th floor
New York, NY 10005
(212) 344-NNFF; fax (212)747-0004
Website: http://www.nf.org
Neurofibromatosis, Inc,
8855 Annapolis Road, Suite 110
Lanham, MD 20706-2924
(301) 577-8984
Website: www.nfinc.org
Pain
American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677
(916) 632-0922
Website: http://www.theacpa.org
American Pain Society
5700 Old Orchard Road
First Floor
Skokie, IL 60077-1024
(847) 375-4715
Website: http://ampainsoc.org
National Chronic Pain Outreach Association, Inc.
PO Box 274
Millboro VA, 24460
(540) 862-9437
Palsy, Progressive Supranuclear Society for Progressive Supranuclear Palsy
RR Box 45
Bradshaw, NE 68319
(800) 457-4777; fax (410) 614-9260
Website: http://www.psp.org
Parkinson's Disease American Parkinson Disease Association, Inc.
1250 Hylan Boulevard Suite 4B
Staten Island, NY 10305-1946
(800) 223-2732; fax (718) 981-4399
Website: http://www.apdaparkinson.org
American Parkinson Disease Association, California Office
14551 Friar Street
Van Nuys, CA 91411
(818) 908-9951
Website: http://www.apdaparkinson.org
The Parkinson's Institute
1170 Morse Avenue
Sunnyvale, CA 94089-1605
(408) 734-2800; fax (408) 734-8522
Website: http://www.parkinsonsinstitute.org
National Parkinson Foundation, Inc.
1501 NW 9th Avenue
Bob Hope Research Center
Miami, FL 33136-1494
(800) 433-7022; fax (305) 243-4403
Website: http://www.parkinson.org
Parkinson's Disease Foundation
710 West 168th Street
New York, NY 10032-9982
(212) 923-4700; fax (212) 923-4778
Website: http://www.parkinsonfoundation.org
United Parkinson Foundation (UPF)
833 West Washington Boulevard
Chicago, IL 60607
(312) 733-1893; fax (312) 733-1896
Porphyria American Porphyria Foundation
P.O. Box 22712
Houston, TX 77227
(713) 266-9617; fax (713) 871-1788
Website: www.post-polio.org
Postpolio Syndrome International Polio Network (IPN)
4207 Lindell Boulevard Suite 110
Saint Louis, MO 63108-2915
(314) 534-0475; fax (314) 534-5070
Website: http://www.gimi_intl@msn.com
Polio Society
P. O. Box 106273
Washington, DC 20016
(301) 897-8180
Prader-Willi Syndrome Prader-Willi Syndrome Association (USA)
5700 Midnight Pass Road Suite #6
Sarasota, FL 34242-3000
(314) 962-7644
The Prader-Willi Syndrome Association
Reflex Sympathetic Dystrophy Syndrome
Reflex Sympathetic Dystrophy Association
P.O. Box 502
Milford CT 06460
(203) 877-3790
Website: http://www.rsds.org
Restless Legs Syndrome Restless Legs Syndrome Association (IRSA)
8511 Rose Marie Drive
Ft. Washington, MD 20744
(703) 836-8119
Rett Syndrome International Rett Syndrome Association
9121 Piscataway Road, Suite 2-B
Clinton, MD 20735
(301) 856-3334; fax (301) 856-3336
1-800-818-7388
Website: http://www.rettsyndrome.org
Reye's Syndrome National Reye's Syndrome Foundation
426 North Lewis
Bryan, OH 43506
(419) 636-2679; fax (419)636-3366
Website: http://www.bright.net/~reyessyn
Sleep Disorders
American Sleep Apnea Association
1424 K Street NW, Suite 302
Washington, DC 20005
(202) 293-3650
Website: http://www.sleepapnea.org
Narcolepsy Network
277 Fairfield
Suite 310B
Fairfield, NJ 07004
(973) 276-0115
Website: http://www.websciences.org/narnet
National Sleep Foundation
1522 K Street NW, Suite 500
Washington, DC 20005
(202) 347-3471
Website: http://www.sleepfoundation.org
Spina Bifida Spina Bifida Association of America
4590 MacArthur Boulevard NW
Suite 250
Washington, DC 20007
(202) 944-3285; fax (202) 944-3295
Website: http://www.sbaa.org
Spinal Injuries American Paralysis Association
500 Morris Avenue
Springfield, NJ 07081
(973) 379-2690
Website: http://www.apacure.org
Kent Waldrep National Paralysis Foundation
16415 Addison Road Suite 550
Addison TX 75001
(972) 248-7100
Website: www.spinalvictory.org/
National Spinal Cord Injury Association
6701 Democracy Blvd Suite 300-9
Bethesda MD 20817
(301) 588-6959
National Spinal Cord Injury Association
Paralyzed Veterans of America
Attn: Janet Litten
801 Eighteenth Street, NW
Washington, DC 20006
(202) 872-1300; fax (202) 785-4452
Website: http://www.pva.org
Spinal Cord Society
Wendell Road
Fergus Falls, MN 56537
(218) 739-5252; fax (218) 739-5262
http://www.users.aol.com/scsweb
Families of Spinal Muscular Atrophy
P.O. Box 1465
Highland Park, IL 60035-7465
(847) 367-7620
American Heart Association (AHA)
Stroke
7320 Greenville Avenue
Dallas, TX 75231
(214) 373-6300
Website: http://www.americanheart.org
American Occupational Therapy Association
Stroke
4720 Montgomery Lane
P.O. Box 31220
Beheads, MD 20824-1220
(301) 652-2682; fax (301) 652-7711
Website: http://www.aota.org
National Stroke Association
8480 East Orchard Road, Suite 1000
Englewood, CO 80111-5015
(303) 649-9299
Website: www.stroke.org
Syringomyelia American Syringomyelia Alliance Project Inc.
P.O. Box 1586
Longview, TX 75606-1586
(903) 236-7079
American Syringomyelia Alliance Project Inc.
Tay-Sachs
National Tay-Sachs & Allied Diseases Association
2001 Beacon Street
Brookline, MA 02146
(617) 277-4463
Tourette Syndrome Tourette Syndrome Association
42-40 Bell Blvd. Suite 205
Bayside, NY 11361-2820
(718) 224-2999
Website: http://www.tsa-usa.org/
Tourette Syndrome Foundation of Canada
238 Davenport Road, Suite 343
Toronto, ONT.M5R IJ6
(416) 351-7757
Tremor International Tremor Foundation (ITF)
7046 W. 105th
Overland Park, KS 66212
(913) 341-3880
Email: IntTremorFnd@worldnet.att.net
Trigeminal Neuralgia Trigeminal Neuralgia Association
P.O. Box 785
Barnegat Light, NJ 08006
(609) 361-1014
Website: http://neurosurgery.mgh. harvard.edu/tna/
Tuberous Sclerosis National Tuberous Sclerosis Association
8000 Corporate Drive, Suite 120
Landover, MD 20785
(310) 459-9888; fax (301) 459-0394
Williams Syndrome
Williams Syndrome Association
P.O. Box 297
Clawson, MI 48017-0297
(248) 541-3630; fax (248) 541-3631
Website: http://www.williams-syndrome.org
Wilson's Disease National Center for the Study of Wilson's Disease
(NCSWD)
432 W. 58th Street, Suite 614
New York, NY 10019
(212) 523-8717; fax (212) 523-8708
Website: http://www.wilsonsdiseasecenter.org
If you know of additions or corrections to this list, please contact the East Texas Medical Center Neurological Institute administrator at info@etmc.org
