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.

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Overview

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 2007, the annual Labor Day Telethon raised a record USD$63.7 million. 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 Red Cross).

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. Facioscapulohumeral muscular dystrophy
6. Myotonic dystrophy
7. Oculopharyngeal muscular dystrophy
8. Distal muscular dystrophy
9. Congenital muscular dystrophy

It also targets the following:

1. Amyotrophic lateral sclerosis
2. Infantile spinal muscular atrophy
3. Juvenile, Intermediate, and Adult spinal muscular atrophy
4. Spinal bulbar muscular atrophy
5. Dermatomyositis
6. Polymyositis
7. Inclusion body myositis
8. Myasthenia gravis
9. Lambert-Eaton myasthenic syndrome
10. Congenital myasthenic syndrome
11. Hyperthyroid myopathy
12. Hypothyroid myopathy
13. Charcot-Marie-Tooth disease
14. Friedreich's ataxia
15. Dejerine-Sottas disease
16. Myotonia congenita, both Thomsen's and Becker's Disease
17. Paramyotonia congenita
18. Central core disease
19. Nemaline myopathy
20. Myotubular myopathy (Centronuclear myopathy)
21. Periodic paralysis, both Hypokalemic and Hyperkalemic
22. 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

The MDA's national headquarters are in Tucson, Arizona.

Criticisms

The MDA and Jerry Lewis have been criticized by 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.^[2]

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. ^[3]

References

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
• Muscular Dystrophy Association's website in Greece