Amyotrophic Lateral Sclerosis (ALS) - Support Groups

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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 asLou 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

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hopeforjoy

My dearest friend, Joy Styles, died from ALS on July 1st 2011. She was only 52. She was running half marathons and was very active when she noticed an atrophy in her left and and a weakness in her right leg. I have created a website in her name http://www.hopeforjoy.ca that is about her and has useful information about the disease. I wish I could do more, but every little bit helps. God bless everyone who has had experience with this terrible disease.

Doctor_Lilly

My symptoms started off with extreme muscle spasms and cramps. It would get worse when I was on my monthly. I was walking and running at the time to lose some weight that I thought was causing the muscle aches, headaches, and the pain that I was feeling in my whole body. One day it got overwhelming. It was August 17th, 2007. I felt like I was getting the life squeezed out of me and my mind was racing the whole time while experiencing difficulty speaking, walking, and trying to control the jerky movements. I was admitted as a psychiatric patient at that time, now it's been two years later and I feel like I am disseminating. I had another attack recently and that is what scared me enough to go to the neurologist. I am still afraid. I want to see it, and I'm interested in the damage that my body has endured. Can't wait to start treatment. Findyourdrug.com

maltese

is there any connection between injections, dentistry and ALS? my mothers first symtoms began a month after the dentist!

Ajit52

May be due to mercury toxicity as mercury is used in filling teeth. Use [abuse] of pain killers are also responsible for ALS. My sister is also suffering from bulber palasy and has been on ventilatory support since March last year. Her symptons started after visiting dentist.

Guest

Yes, I'm certain after reading a book "It's All In Your Head" by Hal Huggins, that ALS is due to microbes surviving under a healed area where a tooth has been pulled, in a cavitation. An infection that turns systemic and thus breaks down healthy nerves. I have a friend in the early stages of ALS right now and had recent abcesses/dental work done shortly before diagnoses. When one has a tooth pulled, they must insist on sterilization of the cavitation or you can die from it! If you have ALS, maybe re opening the healed over cavitation and cleaning it out and then go through a detox and then take supplements to heal nerves such as magnesium and b vitamins and omega 3 etc.. Best of Luck

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