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.

Many celebrities assist the organization, including Jerry Lewis, Ed McMahon, Tom Bergeron, Jann Carl, Ace Young, Billy Gilman, Alison Sweeney, Maureen McGovern, Norm Crosby, Don Francisco and many more. The MDA's national headquarters are in Tucson, Arizona.

Overview

MDA is most famous for its long-running nationwide telethon it holds on Labor Day each year. Begun in 1966, it is hosted by actor and comedian, Jerry Lewis, who has supported the MDA since its inception. Lewis' support has been so ironclad over the years that children and adults assisted by MDA are referred to as Jerry's Kids. In 2008, the annual Labor Day Telethon raised a record USD$65,031,393. In 2005, the MDA made the unprecedented decision to pledge $1 million of the Telethon's money raised to Hurricane Katrina disaster relief, making the donation specifically to the Salvation Army (though the Telethon also urged viewers to give to the American Red Cross).

Diseases targeted by MDA

The MDA targets the following muscular dystrophy diseases:

1. Duchenne muscular dystrophy
2. Becker's muscular dystrophy
3. Emery-Dreifuss muscular dystrophy
4. Limb-girdle muscular dystrophy
5. Amyotrophic lateral sclerosis

It also targets the following:

1. Infantile spinal muscular atrophy
2. Juvenile, Intermediate, and Adult spinal muscular atrophy
3. Spinal bulbar muscular atrophy
4. Dermatomyositis
5. Polymyositis
6. Inclusion body myositis
7. Myasthenia gravis
8. Lambert-Eaton myasthenic syndrome
9. Congenital myasthenic syndrome
10. Hyperthyroid myopathy
11. Hypothyroid myopathy
12. Charcot-Marie-Tooth disease
13. Friedreich's ataxia
14. Dejerine-Sottas disease
15. Myotonia congenita, both Thomsen's and Becker's Disease
16. Paramyotonia congenita
17. Central core disease
18. Nemaline myopathy
19. Myotubular myopathy (Centronuclear myopathy)
20. Periodic paralysis, both Hypokalemic and Hyperkalemic
21. Mitochondrial myopathy, a mitochondrial disease

It also targets muscle diseases due to deficiencies in carnitine and the following enzymes:

1. Phosphorylase
2. Acid Maltase (Pompe's disease)
3. Phosphofructokinase
4. Debrancher enzyme (also known as Amylo-1,6-glucosidase); a glycogen storage disease also known as Forbes disease
5. Carnitine palmityl transferase
6. Phosphoglycerate kinase
7. Phosphoglycerate mutase
8. Lactate dehydrogenase
9. Myoadenylate deaminase

Better Business Bureau and Charity 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.

Charity Navigator which is the largest independent evaluator of charities, gives MDA only two out of four stars for organizational efficiency and fiscal health. ^[1]

Criticism

The MDA and Jerry Lewis have been criticized by disability rights activists for their tendency to paint disabled people as, these advocates say, "pitiable victims who want and need nothing more than a big charity to take care of or cure them."^[2] 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.^[3]

References

External links and sources

• Muscular Dystrophy Association's website
• Muscular Dystrophy Association's/ALS Division website
• MDA Spanish website (Spanish)
• MDA Puerto Rico website (Spanish)
• 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
• Muscular Dystrophy Association's website in Greece