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Amyotrophic Lateral Sclerosis (ALS) - Support Groups

Last Updated on May 07, 2018
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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.

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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:

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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:

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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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Comments

mnarciastewart

With my amyotrophic lateral sclerosis [ALS], the first thing that happened almost 2 years ago now, was speaking as if I were drunk. I wasn't. I initially did improve speech (articulating clearly but slow) but now I can no longer speak in an acceptable way. Then, a year later eating became problematic, I was biting my tongue and lips, and chewing became weak and less controlled. Soon after that some fingers started to fail me and things would drop out of my hands. Somewhere at that time bulbar ALS was diagnosed. The Rilutek (riluzole) did very little to help me. The medical team did even less. My decline was rapid and devastating.. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment, Our care provider introduced us to Kycuyu Health Clinic ALS/MND herbal treatment. The treatment is a miracle.i recovered significantly! Visit www. kycuyuhealthclinic. com

glen66t

My ALS [Amyotrophic lateral sclerosis] Symptoms started out with a "foot drop" on my left foot. From there my left leg lost all muscle tone and the entire left leg muscles are gone. Also my fingers and thumbs "contract" at times. Left arm loses muscle tone too. My family doctor said there is no cure for ALS, I was just living unhappy life till I saw a blog talking about Best Health Herbal Centre. So many people said positive things about their herbal product which I don’t believe at first. I showed my daughter what I saw online about their product and my daughter decided we shall give it a try. Few days later she purchased two bottle of ALS herbal remedy which they said I will use for only six weeks. My life changed automatically after six weeks of applying the herbal remedy as instructed. All my symptoms was terminated completely and am now living ALS FREE .. All Thanks to Best Health Herbal Centre for their good work in people’s life. For more details about their herbal product visit their Homepage w ww .besthealthherbalcentre. co m

Andrea59

Are there any new treatments for Als?

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

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