Support Groups
Lou Gehrig the well known American baseball player was diagnosed with ALS in 1939. He was nick named the ‘Iron Horse’ – a reference to his never –say- die attitude. He kept playing the game despite his condition with episodes of broken bones and back spasms. Finally, he lost his battle against the disease in 1941 and the condition was named after him as ‘Lou Gehrig’ disease. Since that time it has been the norm for celebrities to be associated with fatal and debilitating diseases.
ALS is a crippling and progressively debilitating condition. disease. An ALS diagnosis is bound to upset and even depress any individual. It is also very upsetting for the family of the diagnosed individual. It would be appropriate for them to join a support group in order for them to interact react with individuals in similar situations, to learn from them and to share their problems.
How Can I Help Research?
If you suffer from ALS or any other neurological disorders and if you harbor the desire to help ALS research then you have a chance.
The National Institute of Neurological Disorders and Stroke (NINDS) which also supports Human Brain and Spinal Fluid Resource Center in Los Angeles is s a tissue bank that supplies researchers around the world with tissues from patients suffering from neurological and other disorders. Tissues from ALS individuals is required as raw material for scientists to study this condition in depth.
Interested donors may contact:
Human Brain and Spinal Fluid Resource Center
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles, CA 90073
310-268-3536
24-hour pager: 310-636-5199
Email: [email protected]
http://www.loni.ucla.edu/~nnrsb/NNRSB
More Info
For more information on the research programs funded by NINDS kindly contact the Institute's Brain Resources and Information Network (BRAIN) at:
BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
Information also is available from the following organizations:
| ALS Association 27001 Agoura Road Suite 250 Calabasas Hills, CA 91301-5104 [email protected] http://www.alsa.org Tel: 818-880-9007 800-782-4747 Fax: 818-880-9006 | Les Turner ALS Foundation 5550 W. Touhy Avenue Suite 302 Skokie, IL 60077-3254 [email protected] http://www.lesturnerals.org Tel: 888-ALS-1107 847-679-3311 Fax: 847-679-9109 |
| Muscular Dystrophy Association 3300 East Sunrise Drive Tucson, AZ 85718-3208 [email protected] http://www.mda.org Tel: 520-529-2000 800-344-4863 Fax: 520-529-5300 | Project ALS 900 Broadway Suite 901 New York, NY 10003 [email protected] http://www.projectals.org Tel: 212-420-7382 800-603-0270 Fax: 212-420-7387 |
| ALS Therapy Development Institute 215 First Street Cambridge, MA 02142 [email protected] http://www.als.net Tel: 617-441-7200 Fax: 617-441-7299 |
Organizational Resources:
The ALS Association
27001 Agoura Road, Suite 250
Calabasas Hills, CA 91301
Toll-free Information and Referral Service - (800) 782-4747
Phone (818) 880-9007
Fax (818) 880-9006
E-mail: [email protected]
Web site: www.alsa.org
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone (301) 942-6430
(800) 896-3650
Fax (301) 942-2302
E-mail: [email protected]
Web site: www.nfcacares.org
National Alliance for Caregiving
4720 Montgomery Lane, Suite 642
Bethesda, MD 20814
Phone (301) 718-8444
Fax (301) 652-7711
E-mail: [email protected]
Web site: www.caregiving.org
Family Caregiver Alliance
690 Market Street, Suite 600
San Francisco, CA 94104
Phone (415) 434-3388
(800) 445-8106 (in California)
Fax (415) 434-3508
E-mail: [email protected]
Web site: www.caregiver.org
Other Web sites
CareGuide
www.careguide.com
Empowering Caregivers
www.care-givers.com
ElderCare Online
www.ec-online.net
Share the Care
www.sharethecare.org
Today's Caregiver Online
www.caregiver.com
