Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) is an organization founded in 1950 which combats muscular dystrophy and diseases of the nervous system and muscular system in general by funding research, providing medical and community services, and educating health professionals and the general public.

The MDA is most famous for the nationwide telethon it holds on Labor Day each year. Begun in 1966, it is hosted by Jerry Lewis, who has supported the MDA since its inception. Lewis's support has been so ironclad over the years that children assisted by the MDA are referred to as Jerry's Kids. In 2005, despite the impact of Hurricane Katrina, the annual Labor Day Telethon raised 54.9 million. The MDA made the unprecedented decision to pledge $1 million of the money raised to disaster relief, making the donation specifically to the Salvation Army (though the telethon also urged viewers to give to the Red Cross).

The MDA targets the following muscular dystrophy diseases:# Duchenne muscular dystrophy# Becker's muscular dystrophy# Emery-Dreifuss muscular dystrophy# Limb-girdle muscular dystrophy# Facioscapulohumeral muscular dystrophy# Myotonic dystrophy# Oculopharyngeal muscular dystrophy# Distal muscular dystrophy# Congenital muscular dystrophy

It also targets the following:# Amyotrophic lateral sclerosis# Infantile spinal muscular atrophy# Juvenile, Intermediate, and Adult spinal muscular atrophy# Spinal bulbar muscular atrophy# Dermatomyositis# Polymyositis# Inclusion body myositis# Myasthenia gravis# Lambert-Eaton myasthenic syndrome# Congenital myasthenic syndrome# Hyperthyroid myopathy# Hypothyroid myopathy# Charcot-Marie-Tooth disease# Friedreich's ataxia# Dejerine-Sottas disease# Myotonia congenita, both Thomsen's and Becker's Disease# Paramyotonia congenita# Central core disease# Nemaline myopathy# Myotubular myopathy (Centronuclear myopathy)# Periodic paralysis, both Hypokalemic and Hyperkalemic# Mitochondrial myopathy, a mitochondrial disease

It also targets muscle diseases due to deficiencies in carnitine and the following enzymes:# Phosphorylase# Acid Maltase (Pompe's disease)# Phosphofructokinase# Debrancher enzyme (also known as Amylo-1,6-glucosidase); a glycogen storage disease also known as Forbes disease# Carnitine palmityl transferase# Phosphoglycerate kinase# Phosphoglycerate mutase# Lactate dehydrogenase# Myoadenylate deaminase

The MDA's national headquarters are in Tucson, Arizona. Its most visible fundraising event is the "Jerry Lewis MDA Telethon" held every Labor Day weekend since 1966.

Criticisms

The MDA and Jerry Lewis have been criticized by some disability rights activists for their tendency to paint disabled people as "pitiable victims who want and need nothing more than a big charity to take care of or cure them."[1] Critics argue that focusing the public's attention on medical cures to "normalize" disabled people fails to address issues like providing accessible buildings, transportation, employment opportunities and other civil rights for the disabled.

Jerry Lewis has also made some disparaging remarks towards the disabled community:
* In 1990, he wrote a first-person essay entitled "If I Had Muscular Dystrophy" for Parade magazine, in which he characterized those with muscular dystrophy as "being half a person."[2] Many in the disabled community viewed his remarks as prejudicial, contributing to the idea that disabled people are "childlike, helpless, hopeless, nonfunctioning and noncontributing members of society."[3]
* On May 20 2001, he responded to his critics in an interview on CBS News Sunday Morning: "If you don't want to be pitied for being a cripple in a wheelchair, don't come out of the house." Again, disability rights activists blasted him for characterizing disabled people as helpless and homebound.

It is a little known fact that the exact amount of the final tally that rolls up on the board at the close of each annual Telethon has been predetermined by MDA representatives weeks before the Telethon is held.

Better Business Bureau assessment of MDA

According to a Better Business Bureau summary released in February 2004:
*The MDA oversees a network of 230 hospital-affiliated clinics providing diagnosis and treatment;
*In 2003, 4500 children and young adults, between the ages of 6 - 21, attended week-long summer camps sponsored by the MDA;
*Research and clinical trials on treatments for Lou Gehrig's disease are conducted in 30 MDA/ALS centers;
*The MDA has a paid staff of 1353 people;
*Of the $166.5 million donated because of fund-raising activities (mostly its annual telethon), 17% of that was spent on the fund-raising activities themselves.

External links and sources

* Muscular Dystrophy Association's website
* Wise Giving Alliance report on MDA from the Better Business Bureau
* The Kids Are All Right, a documentary film critical of the MDA and Jerry Lewis