Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) is an American organization 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 organisation was founded in 1950 as the Muscular Dystrophy Associations of America, renamed to its present name in the 1970s.

Many celebrities assist the organization, including Jerry Lewis, the late Ed McMahon, Tom Bergeron, Jann Carl, Ace Young, Cynthia Garrett, Billy Gilman, Norm Crosby, Alison Sweeney, Maureen McGovern, Don Francisco, John Ondrasik, and many more. Several notable celebrities with Muscular Disorders make personal appeals on behalf of this association, including Todd Taylor. MDA's national headquarters are in Tucson, Arizona.

Overview

Fire fighters raising money for the MDA, Labor Day weekend, Clinton, Michigan

MDA is most famous for its long-running nationwide telethon it holds on Labor Day each year. Debuted in 1966, it was previously hosted by actor and comedian Jerry Lewis, who has supported the MDA, serving as its national chairman since its inception in 1950. 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). Originally broadcast for up to 21½ hours from 1966 to 2010, the event will be cut back to six hours in 2011.^[1] The 2011 edition of the telethon was originally announced to have been Lewis' last as host, with him continuing his role as MDA's National Chairman;^[2] however, on August 3, 2011, the MDA announced that Lewis resigned as host and chairman, due to circumstances not revealed.^[3]

Lewis' support has been so ironclad over the years that children and adults assisted by MDA are referred to as Jerry's Kids. Each year (sometimes for multiple-year stretches), one of these children is chosen to be the MDA's "National Goodwill Ambassador", which, until the 1980s, were referred to as "poster children". The MDA's first poster child was Jolene Kay Worley, in 1955; she lived through 1993.^[4] The most well-known of these was Mattie Stepanek, who was National Goodwill Ambassador from 2002 until his 2004 death; he was notable for his Heartsongs series of poetry books.

Every summer, for one week, hundreds of children that have been diagnosed with Muscular Dystrophy are able to attend a camp designated for only them. There is a one counselor to one camper ratio and the entire week the children, ages 6-17, are paired with an adult volunteer. They get to participate in fun activities and games and stay overnight from Sunday to Saturday. The camps are set up regionally and are different weeks throughout the months of June and July. The entire camp staff are volunteer members and are required to interview and apply with good recommendations. The cost of the camp for the campers, the children diagnosed with Muscular Dystrophy, is covered by the many fundraisers the MDA organization do each year.

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."^[5] Critics argue that focusing the public's attention on medical cures to "normalize" disabled people fails to address issues like providing accessible buildings and transportation, and employment opportunities and other civil rights for the disabled.^[6] The Telethon has recently been targeted by disability activists who engage in street protests in front of the Telethon's location during its broadcast^{[citation needed]}.

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
6. Congenital muscular dystrophy

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
22. Facioscapulohumeral muscular dystrophy, FSHD

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 two out of four stars for organizational efficiency and fiscal health.^[7] A two-star rating by Charity Navigator indicates that the charity "Needs Improvement", and that the charity "Meets or nearly meets industry standards but underperforms most charities in its Cause". The primary reason that the MDA receives this relatively low rating is that 22.7% of its income is used for Administrative and Fund-raising expenses.

References

1. ^ MDA: "MDA Labor Day Telethon Moves to Shorter Format", October 6, 2010.
2. ^ MDA press release, via Zap2it: "You’ll Never Walk Alone: Jerry Lewis To Make His Final Telethon Appearance", May 16, 2011.
3. ^ MDA: "Jerry Lewis Completes Run as MDA National Chairman", August 3, 2011.
4. ^ Seattle Times: Obituary of Jolene Kay Worley; April 22, 1993.
5. ^ TheKidsAreAllRight documentary website about a renegade Jerry's Kid named Mike Ervin
6. ^ "The Nutty Profess-ion" article from Rabble News
7. ^ MDA Charity Navigator Rating

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