MDA National Awareness Effort Spotlights ALS (Lou Gehrig’s Disease)Tucson, Ariz., April 28, 2010 - Throughout May, the Muscular Dystrophy Association will lead activities nationwide to raise awareness of the deadly neuromuscular disease ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).
This is the 19th year in which MDA's National ALS Awareness Month activities have spotlighted this devastating disease. ALS affects more than 30,000 Americans, with about 5,000 new diagnoses made every year. On average, people with the disease die within three to five years of their diagnosis. ALS destroys the nerve cells that control voluntary muscles, causing paralysis of the body's voluntary muscles, including those needed for breathing. The cause is not yet known.
MDA offices across the country will host informative seminars, special events and other activities to educate the public about ALS. In addition, for the fourth year MDA is putting a face on the disease through its online series "ALS: Anyone's Life Story ."
Every day during May, one outstanding individual with ALS will be featured on MDA's ALS Division website, www.als-mda-org. He or she will discribe the physical and emotional impacts of the disease, and how they deal with daily challenges caused by ALS.
Because ALS affects not only the people with the disease, but all those who care about them, MDA is adding a new feature to its awareness effort -- "ALS: It's My Story, Too." Anyone whose life is touched by ALS can go to www.als-mda.org to offer his or her own experiences and perspectives, through text, photos and videos.
MDA has long been the world's leading nongovernmental funding source of ALS research and services. The Association's total historical investment fighting ALS exceeds $270 million. In 2010, MDA has dedicated $13.3 million to ALS research plus $10.4 million to health care services and information for those with ALS.
MDA ALS programs include:
- an aggressive, cure-driven research effort that incorporates the largest ALS drug discovery project in history, at the ALS Therapy Development Institute in Cambridge, Mass.;
- specialized medical care at 37 MDA/ALS Centers which are part of MDA's national network of more than 200 hospital-affiliated clinics;
- over 200 support groups;
- an equipment loan program for durable medical equipment such as wheelchairs, shower chairs, hospital beds, communication devices, and more;
- assistance with repairs to medical equipment; and
- extensive research news and practical information for daily living through ALS-specific publications and videos such as MDA/ALS Newsmagazine, The MDA/ALS Caregiver's Guide, With Hope and Courage: Your Guide to Living With ALS and Everyday Life with ALS.
For information about MDA ALS Awareness Month activities in specific areas, contact local MDA offices by calling (800) 572-1717.
Posted: April 28, 2010
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