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Caregiver Resources
ALS
Amyotrophic Lateral Sclerosis (ALS), also called Lou Gehrig's Disease or Motor Neuron Disease, is a progressive, neuromuscular disease that attacks nerve cells and pathways in the brain and spinal cord.
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Resources
Books and Pamphlets
Amyotrophic Lateral Sclerosis: A Guide for Patients and Families, 2nd Edition (2000) by Hiroshi Mitsumoto and Theodore L. Munsat, $34.95. Published by Demos Medical Publishing Inc., 386 Park Ave S # 201, New York, NY 10016, Phone: 212-683-0072.
Journeys with ALS: Personal Tales of Courage and Coping with Lou Gehrig's Disease (1998) compiled by David Feigenbaum, $24.95 (including shipping). DLRC Press, P.O. Box 61661, Virginia Beach, VA 23466, (800) 776-0560, [email protected].
Living with ALS. A series of six manuals for people with ALS, their families and caregivers. Published by the ALS Association. Available free to people with ALS, their families and professionals by calling 800-782-4747 or e-mailing [email protected]
Web Resources
(See additional links under Organizations)
ALS Digest
An e-mail newsletter by Bob Broedel. To subscribe, send an e-mail to [email protected].
ALS Survival Guide
www.lougehrigsdisease.net
International Alliance of ALS/MND Associations on the Internet
www.alsmndalliance.org
Organizations
Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
www.caregiver.org
[email protected]
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
FCA's National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, ALS, head injury, Parkinson's and other debilitating brain disorders that strike adults.
ALS Association (ALSA)
27001 Agoura Road, Suite 150
Calabasas Hills, California 91301-5104
(818) 880-9007
(800) 782-4747
www.alsa.org or
www.alsabayarea.org (San Francisco Bay Area Chapter)
[email protected]
Forbes Norris ALS Research Center
California Pacific Medical Center
2324 Sacramento Street
San Francisco, California 94115
(415) 923-3604
The ALS Center at UCSF
350 Parnassus Avenue, Suite 500
San Francisco, CA 94117
(415) 476-1986
Les Turner ALS Foundation
8142 North Lawndale Avenue
Skokie, Illinois 60076-3322
(847) 679-3311
(888) ALS-1107
www.lesturnerals.org
[email protected]
The Muscular Dystrophy Association (MDA)
3300 East Sunrise Drive
Tucson, Arizona 85718-3208
(520) 529-2000
(800) 572-1717
www.mdausa.org (Their web site includes information on ALS in Spanish.)
National Institute of Neurological Disorders and Stroke
Building 31, Room 8A-06
31 Center Dr., MSC 2540
Bethesda, MD 20892-2540
(800) 352-9424
www.ninds.nih.gov (e-mail is available through the site)
Prepared by Family Caregiver Alliance in cooperation with California's Caregiver Resource Centers. Reviewed by Richard K. Olney, M.D., The ALS Center at UCSF. Revised August, 2001. © All rights reserved.