Magazine article The Exceptional Parent

The Muscular Dystrophy Association MDA[R]. (Organizational Spotlight)

Magazine article The Exceptional Parent

The Muscular Dystrophy Association MDA[R]. (Organizational Spotlight)

Article excerpt

"There are no incurable diseases, only diseases for which cures have not yet been found."

That was the hope and the philosophy of a group of adults and parents of children with muscular dystrophy who joined in 1950. to form the Muscular Dystrophy Association. That premise continues to guide MDA's course today.

MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through worldwide research, services and professional and public health education. The Association supports more research on neuromuscular diseases than any other private-sector voluntary organization in the world while also offering the most comprehensive array of services of any voluntary U.S. health organization.

WHAT DOES THE MDA DO?

Because of its unique array of services, the MDA was the first nonprofit organization honored with the American Medical Association's Lifetime Achievement Award "for significant and lasting contributions to the health and welfare of humanity." Its programs include:

Worldwide Research. MDA awards about $25 million in research grants each year to scientists around the world seeking treatments and cures for the diseases in its program. MDA-sponsored researchers have made groundbreaking discoveries about the underlying genetic causes of virtually every genetic neuromuscular disease. In some cases, treatments which slow progression or ease symptoms have also been identified. MDA is currently funding research on several promising fronts, including the use of donated stem cells, gene therapy and drug therapy.

Nationwide Services Program. The Association provides a network of more than 230 hospital-affiliated medical clinics across the country, each staffed by doctors familiar with these rare conditions, as well as social workers, physical and respiratory therapists and other health professionals. Services are administered through local MDA offices and include free flu shots; assistance with the fitting, purchase and repair of wheelchairs and leg braces; loan closets of durable medical equipment; and parent and patient support groups.

Summer Camp Last year more than 4,000 children ages 6 to 21 spent a free week at camp--what many call "the best week of the year." Each camper is paired with a volunteer counselor who helps the child with practical matters and makes sure s/he joins in the fun.

Professional and Public Health Education MDA sponsors publications for affected families and for the general public about neuromuscular disorders, convenes international scientific meetings, and holds conferences of MDA clinic directors and their associates. An award-winning bimonthly magazine, Quest, and a series of pamphlets geared to those with new diagnoses help people stay on top of news and understand the effects of the disorders. Online support and information is available at http://www.mdausa.org, with materials in Spanish at http://www.mdaenespanol.org. Preschool disability awareness education is provided through MDA's Hop-a-Thon program in daycare centers and preschools.

WHAT IS A NEUROMUSCULAR DISEASE?

There are eight categories of neuromuscular diseases under the MDA umbrella. Among these are diseases that manifest at birth, those that present in early and late childhood and those that appear in adulthood. The underlying causes, levels of severity and rates of disease progression vary among the categories and the individual disorders.

All neuromuscular disorders cause weakness and wasting of voluntary skeletal muscles, but not all are life-threatening. …

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