Muscular Dystrophy Association

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Official MDA Logo

The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to saving and improving the lives of anyone with muscle disease, including muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases. It does so by funding worldwide research to find treatments and cures; by providing comprehensive health care services and support to MDA families nationwide; and by rallying communities to fight back through advocacy, fundraising and local engagement.

The organization was founded by a group of concerned parents of children with muscular dystrophy who joined forces in 1950. With support from the legendary Jerry Lewis, America's top celebrities and corporations, and our nations fire fighters, MDA has since evolved into a nonprofit powerhouse advancing a globally significant quest to save and improve the lives of more than 1 million Americans living with life-threatening muscle disease.

Many celebrities and entertainers have supported the organization over the years, including Ed McMahon, Frank Sinatra, Dean Martin, Sammy Davis, Jr., Norm Crosby, Diana Ross, Michael Jackson, Aretha Franklin, Celine Dion, Tim McGraw, Tom Bergeron, Jann Carl, Pitbull, will.i.am, Carole King, Brandy, Jennifer Lopez, Paula Abdul, Backstreet Boys Ace Young, Billy Gilman, Alison Sweeney, Maureen McGovern, Don Francisco, John Ondrasik, Nancy O'Dell and many, many more.

MDA's national office is in Chicago, Illinois.

Overview[edit]

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

MDA is most famous for its MDA Show of Strength long-running nationwide telethon it holds on Labor Day weekend each year. Debuting in 1966, it was previously hosted by actor and comedian Jerry Lewis who also served 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 was 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), a child affected by a muscle disease is chosen to be the MDA's "National Goodwill Ambassador", which, until the 1980s, were referred to as "poster children". In 1952, the MDA inaugurated Michael Danna as its first Poster Child.[4] One of the most well-known ambassadors was Mattie Stepanek, the National Goodwill Ambassador from 2002 until his death in 2004. He was notable for his best-selling Heartsongs series of poetry books, and his appearances on The Oprah Winfrey Show and Good Morning America. More recent MDA National Goodwill Ambassadors have been 12-year-old Bryson Foster (2012-2013) of Concord, N.C. who is affected by Duchenne muscular dystrophy and current National Goodwill Ambassador 9-year-old Reagan Imhoff of New Berlin, Wisconsin.

Every summer, for one week, thousands of children from across the country who have been diagnosed with one of the 43 muscle diseases covered in MDA's program 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. The camps are set up locally and are different weeks throughout the months of May through August. 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 and volunteers is covered by the many fundraisers the MDA does each year.

The MDA and Jerry Lewis were once 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]

Diseases targeted[edit]

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

Legislation[edit]

The MDA supported the Newborn Screening Saves Lives Reauthorization Act of 2013 (H.R. 1281; 113th Congress), a bill that would amend the Public Health Service Act to reauthorize grant programs and other initiatives to promote expanded screening of newborns and children for heritable disorders.[7] The MDA argued that "many of the drug therapies currently under development for MDA's community will be of most benefit if administered either presymptomatically or early in the progression of the disease. Thus, for some of the diseases in MDA's program, the availability of a newborn screening program at the time of treatment availability presents the best opportunity for impacting optimal and potential lifesaving treatment outcomes."[8]

Better Business Bureau and charity assessment[edit]

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 based on Financial, Accountability, and Transparency Performance Metrics.[9]

References[edit]

External links and sources[edit]