Amyotrophic Lateral Sclerosis (ALS) - Support Groups

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: RMNbbank@ucla.edu
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 advocacy@alsa-national.org 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 info@lesturnerals.org 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 mda@mdausa.org 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 info@projectals.org 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 info@als.net 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: alsinfo@alsa-national.org
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: info@nfcacares.org
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: info.nac@erols.com
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: info@caregiver.org
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

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