AbleData
8455 Colesville Road, Suite 935
Silver Springs, MD 20910
800-227-0126
Funded by the national Institute on Disability and Rehabilitation Research, AbleData provides free information from a database listing more than 17,000 adaptive devices for all disabilities.

Architectural and Transportation Barriers
1331 F Street NW, Suite 1000
Washington, DC 20004
202-272-5434
202-272-5447
An independent agency charged with ensuring that certain facilities designed, constructed, leased or altered with federal funds since September 1969 are accessible to and usable by persons with disabilities.

American Red Cross
430 17th Street, NW
Washington, DC 20006
202-737-8300 (by department)
Offers health education programs (wellness courses and home nursing instruction), health services (screening programs), blood services (collection and processing of blood donations).

Air Life Line
l7l6 X St.
Sacramento, CA 958l8
Office hours Monday - Friday 7:30AM to 4:30PM Pacific Time
800-446-l23l
Offers free air transportation

American Academy Association of Neurosurgeons in Chicago
American Association of Neurological Surgeons (AANS)
22 South Washington St.
Park Ridge, IL 60068
708-692-9500

American Academy of Pediatrics
141 NW Point Road
Elk Grove Village, IL 60007
800-433-9016
800-421-0589 (IL only)
847-228-5005
Focus: Information on infant health topics and state maternal and child health programs.

American Board of Medical Genetics
9650 Rockville Pike
Bethesda, MD 20814
301-571-1825

American Board of Medical Specialties
800-776-CERT (2378)
Answers questions about doctor certifications, i.e., when and where certified

American Board of Neurosurgeons
6550 Fannin St.
Houston, TX 77030-2701
713-790-6015
FAX 713-794-0207

American Board of Orthopedic Surgery
400 Silver Cedar Ct.
Chapel Hill, NC 27514
919-929-7103

American Board of Pediatrics
lll Silver Cedar Ct.
Chapel Hill, NC 27514-1651
919-929-0461

American Brain Tumor Association
2720 River Road, Suite 146
Des Plaines, IL 60018
847-827-9910
FAX: 847-827-9918
e-mail: ABTA@aol.com

American Chronic Pain Association, Inc.
P.O. Box 850
Rocklin, CA 95677
9l6-632-0922

American Hospital Association Guide to the Health Care Field
1 N. Franklin
Chicago, IL 60606
800-242-2626
312-422-3000 (by department)
A professional organization representing hospitals and other facilities that provide medical care.

American Medical Association (AMA)
312-464-5000

American Paralysis Association
Montebello Hospital
2201 Argonne Drive
Baltimore, MD 21218
800-526-3456
410-366-2325
APA's 24-hour toll free hotline provides referral and other information on rehabilitation and psychological adjustment.

American Pediatric Gastroesophageal Reflux Association.
c/o Patricia DeLuca
106 Bolecock Ave. North
Weymouth, MA 02192
617-331-2238

American Pharmaceutical Association
2215 Constitution Avenue NW
Washington, DC 20037
202-628-4410
202-783-2351
A professional organization of pharmacists, specialists who know the chemical makeup and correct use of medicines. Pharmacists dispense drugs according to formal instructions given by doctors, dentists, or podiatrists and can answer questions about nonprescription products sold in pharmacies.

American Physical Therapy Association
1111 N. Fairfax Street
Alexandria, VA 22314
703-684-2782
703-684-7343
An organization of health professionals who help patients recover the greatest possible function following an injury, stroke, or other illness. Physical therapists use exercise, water therapy, and other treatments to strengthen muscles and improve coordination.

American Syringomyelia Alliance Project (ASAP)
P.O. Box l586
Longview, TX 75606-1586
903-236-7079
800-272-7282
FAX 903-757-7456
Email Us

Books on Special Children (BOSC)
PO Box 305
Congers, NY 10920
914-638-1236
914-638-0847
BOSC offers a catalog with books on and for children with special needs.

Brace Mates
Pat Humphries
804-332-5591
Undergarments for people who wear braces for scoliosis; tell her Beth Giles from ASAP recommended her.

Brain Tumor Foundation for Children
2231 Perimiter Park Drive, Suite 9
Atlanta, GA 30341

Canadian Syringomyelia Network
69 Penny Crescent
Markham, Ontario
L3P 5X7
TEL: (905) 471-8278
FAX: (905) 882-8367
Email: csn@passport.ca
Internet: http://www.passport.ca/~csn

Center for Disease Control (CDC)
404-639-3311

Department of Health and Human Service
800-352-9484

Public Health Service
301-496-5751
National Institute of Health (NIH)
National Institute of Neurological Disorders and Stroke (NINDS) Bethesda, MD 20892

Direct Link for the Disabled
PO Box 1036
Solvang, CA 93464
805-688-1603
805-688-5285
A non-profit referral agency, Direct Link maintains listings of more than 10,000 organizations and community-based resource centers for all ages and disabilities.

Exceptional Parent Magazine
617-730-5800
800-562-l973
FAX 6l7-730-8742

Food and Drug Administration
5600 Fishers Lane - HRE88
Rockville, MD 20857
301-443-3170 (by department)
Establishes federal regulations concerning the safety and effectiveness of food products and additives, human and veterinary drugs, cosmetics, products that emit radiation, and medical devices.

Free and Low Cost Care
Call 800-638-0742 in Maryland
800-492-0359 elsewhere for information about free and low-cost care in hospitals and other health centers. Staff will send you a list of facilities in your area participating in the federal Hill-Burton Free Care Program. They will also send eligibility guidelines and advise you about filing any complaints you may have about the program or care you may have received. Information can also be obtained by writing: BHMORD-JRSA, 5600 Fishers Lane, Rockville, MD 20857. (Note: Residents of Alaska and Hawaii must write for information, as the toll-free numbers do not service either state.)

Health Care Financing Administration (HCFA)
6325 Security Boulevard
Baltimore, MD 21207
410-966-3000
Coordinates the federal government's participation in Medicare and Medicaid. HCFA also sponsors health care quality assurance programs such as the Second Surgical Opinion Hotline.

Hydrocephalus Association
870 Market Street, Suite 955
San Francisco, CA. 94l02
415-732-7040

Joint Commission for Accreditation of Healthcare Organizations (JCAHO)
Inspects hospitals every 3 years to make sure they maintain certain standards of care.
708-9l6-5800 between 7 a.m. and 5 p.m. Central Time.

Journal of Neurosurgery
l224 West Main St., Ste. 750
Charlotteville, VA 22903
804-924-5503

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
888-MODIMES (663-4637)
website: http://www.modimes.org/
Services: Support and referral programs for families of handicapped children. Parent support groups. Chapters: 30 nationwide.

Medicaid Information
410-966-3000
Information about eligibility and benefits for needy citizens who require health care is available by contacting the US Health Care Financing Office or by contacting the local public welfare office.

Medicare Information
410-966-3000
Eligibility and benefits for health care of the older American is available by contacting the US Health Care Financing Office.

Miles for Kids In Need Program
Debbie Ryan - Program Administrator
Program is designed to provide air transportation for children in need of emergency medical treatment or to fulfill the wish of a terminally ill child.
Contact American Airlines - The Aadvantage Desk

National Patient Air Transport Hotline (NPATH)
PO Box 1940
Manassas, VA 22110
800-296-1217
Free information and referral to the full range of airline, charitable agency, and commercial service options available for any patient needing transport to distant specialized treatment facilities or places of continuing care.

National Chronic Pain Outreach Association, Inc. (NCPOA)
7979 Old Georgetown Road, Suite 1000
Bethesda, MD 20814-2429
301-652-4948
A non-profit organization whose purpose is to lessen the suffering of people with chronic pain. NCPOA helps people with chronic pain regain control of their pain and their lives.

National Easter Seal Society
230 W. Monroe Street, Suite 1800
Chicago, IL 60606
312-726-6200
312-726-1494
Works to identify the needs of people with disabilities and provides rehabilitation and support services to meet those needs. A nationwide network of separately incorporated affiliate societies in each of the 50 United States, the District of Columbia and Puerto Rico, all of which work together to promote the maximum independence of persons with disabilities.

National Institute of Arthritis, Musculoskeletal & Skin Diseases
301-496-8188

National Institute of Health (NIH)
Bethesda, MD 20892
Grant Department 301-496-9248
301-496-5751 or 800-352-9424

National Institute of Neurological Disorders and Stroke (NINDS)
Building 31, Room 8A16, 31 Center Drive, MSC 254
Bethesda, MD 20892-2540
301-496-5751
301-402-2818
Part of the National Institute of Health, NINDS is the federal government's principal agency for research on the causes, prevention, detection, and treatment of neurological diseases and stroke.

National Organization of Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812
203-746-6518
800-999-6673
FAX 203-746-6481

National Scoliosis Foundation
Joseph O'Brien, President
72 Mt. Auburn St.
Watertown, MA 02172
617-341-6333
FAX 617-926-0398 (M-Th 9-5 Eastern Time)

National Spinal Cord Injury
8300 Colesville Rd., Suite 551
Silver Springs, MD 20910
800-962-9629

Neurosurgery Journal
800-638-6423

Parent Advocacy Coalition for Educational Rights Center (PACER)
4826 Chicago Avenue S
Minneapolis, MN 55417-1098
612-827-2966
612-827-3065
Mission: Service to disabled children and their families.

Scoliosis Association, Janice T. Sacks, President
P.O. Box 811705
Boca Raton, FL 33481-1705
800-800-0669

Sibling Information Network
62 Washington Street
Middletown, CT 06457-2844
203-344-7500
203-344-7595
Mission: Information services to families affected by developmental disabilities.

Spina Bifida Association of America
Spina Bifida Information and Referral
4590 MacArthur Boulevard NW, Suite 250
Washington, DC 20007
800-621-3141
202-944-3295
301-770-7222 (Washington, DC area only)

State Board Medical Examiners Office
Located in the capital city of each state. To find the telephone number, call the capital city information of the state your neurosurgeon is in and ask for the State Board Medical Examiners office or the Medical Practice Board.

Ten Thousand Two Hundred Eighty Nine l0,289 Questionable Doctors (l993)
This is a book that is revised yearly so the number of questionable doctors changes. It lists who has been disciplined by state or federal agencies for malpractice or misconduct. This book can be purchased for approximately $200.00 or it is available in the reference section of many public libraries. This information is also available by state for $15.00. Send your order to Public Citizens Health Research Group, Department QD2, 2000 P St. NW, #700, Washington, DC 20036, or call l-202-588-1000.

US Department of Transportation
400 7th Street SW
Washington, DC 20590
202-366-9305
Information about ADA transportation requirements.

Wishes And Rainbows
Provides financial resources for Chiari/SM patients and families.
www.WishesandRainbows.org