Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) is an American organization, formed 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. MDA is also notable for its close partnership with comedian, actor, singer and filmmaker Jerry Lewis, which lasted for 55 years. Lewis served as its national chairman from 1956 to 2011 while hosting his annual live telethon each Labor Day weekend from 1966 to 2010.

Muscular Dystrophy Association
AbbreviationMDA
FormationJune 1950 (1950-06)
Founded atNew York, NY
Typenon-profit
13-1665552
Focuspatient services and disease research
Location
  • Chicago, Illinois
Region
United States
Key people
  • Lynn O'Connor Vos (CEO)
  • R. Rodney Howell, M.D. (Chairman)
Revenue
$145.3 million (in 2015)[1]
Websitewww.mda.org

Frank Sinatra, Don Rickles, Sammy Davis, Jr., Milton Berle, Wayne Newton, Norm Crosby, Don Francisco, Tony Orlando, Johnny Carson, Aretha Franklin, Maureen McGovern, Diana Ross and other entertainers have also supported MDA over the years.[2] Its national office is in Chicago, Illinois.

History

The organization was founded in 1950 by a group with personal connections to muscular dystrophy. Originally known as the Muscular Dystrophy Associations of America, it was renamed to its present name in the 1970s.[2]

National Goodwill Ambassador

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.[3] One of the most well-known ambassadors was Mattie Stepanek, the National Goodwill Ambassador from 2002 until his death in 2004, notable for his best-selling Heartsongs series of poetry books, and his appearances on The Oprah Winfrey Show and Good Morning America. More recent National Goodwill Ambassadors have been 12-year-old Bryson Foster (2012-2013) of Concord, N.C. who is affected by duchenne muscular dystrophy and 9-year-old Reagan Imhoff of New Berlin, Wisconsin.

Programs and Events
Fire fighters raising money for MDA as part of the Fill the Boot Drive in Clinton, Michigan.

Fill the Boot Drive

Since 1954, MDA has partnered with the International Association of Fire Fighters (IAFF) for the annual Fill the Boot Drive, where firefighters around the country ask those passing to donate to MDA via one of their boots. In 2016, over 100,000 firefighters from 1,507 different IAFF locals participated, raising over $24 million.[4]

Telethon

Debuting in 1966 and held annually on Labor Day weekend until 2014, the telethon was originally hosted by veteran film and stage star Jerry Lewis, who also served as the MDA's national chairman since its inception in 1950 and hosted the show until 2010. 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). In 2008, the annual televised fundraiser raised a record $65,031,393.

Official MDA Logo used until January 29, 2016.

Originally broadcast for up to 21½ hours from 1966 to 2010, the event was cut back to six hours in 2011.[5] The 2011 edition of the telethon was originally announced to have been Lewis' last as host, with him continuing his role as national chairman;[6] however, on August 3, 2011, the MDA announced that Lewis resigned as host and chairman, due to circumstances not revealed.[7] However, in 2016, one year before his death, Lewis broke a five-year silence in a video endorsing MDA's redesigned web site and brand, declaring that the work to end muscular dystrophy be continued.

Additionally, Lewis' support has been so ironclad over the years that children and adults assisted by MDA are referred to as Jerry's Kids. From 2012 to 2014, the show was known as the MDA Show of Strength. In 2014, the organization announced it was discontinuing the show.[8]

Summer Camp

Every summer, for one week, thousands of children from across the country who have been diagnosed with one of the forty-three 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.[9]

Official MDA Muscle Walk logo since 2016.

Muscle Walk

Started in 2010, the MDA Muscle Walk is an annual 1 to 3.1 mile lap event held in over 150 communities across the United States to raise money for research and patient services.[10]

Lock-Up

MDA's Lock-Up event stages local community leaders as "locked up" behind bars and requires a certain amount of money to "bail" them out.[10]

Shamrocks

The Shamrock program, focused around Saint Patrick's Day, includes over 125,000 local retail stores participating. For each donation made at the store, a green shamrock is posted inside the store.[10]

Diseases targeted

MDA targets the following muscle-affecting diseases:[11]

The organization also targets muscle diseases due to deficiencies in carnitine and the following enzymes:[11]

Legislation

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.[12] 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."[13]

The MDA supported the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (H.R. 594; 113th Congress), a bill that would amend the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH).[14] MDA argued that "a great deal of work still needs to be done, and increased federal support is needed to ensure that researchers can continue making progress toward finding a cure."[15]

Charity Assessments

According to a Better Business Bureau summary released in September, 2015, the Organization:[16]

  • oversees a network of 200 hospital-affiliated clinics providing diagnosis and treatment, including more than 40 MDA/ALS centers for Lou Gehrig's disease
  • offers diagnostic and follow-up care, support groups, summer camps for children (aged 6-17), and assistance to repairs medical equipment
  • funds research for disease treatments and cures
  • has a paid staff of 812 people
  • received $145.3 million donated because of fund-raising activities, 15% of which was spent on the fund-raising activities.

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.[17]

Criticism

MDA and 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."[18] 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.[19]

gollark: What would I do with a speech to speech system? That would be silly.
gollark: Why?
gollark: Maybe I should spy on them with a speech to text to speech system.
gollark: Oh, that makes sense.
gollark: I don't remember them saying that.

References
  1. "Charity Report for the Muscular Dystrophy Association". Better Business Bureau. 2015.
  2. "History". Muscular Dystrophy Association.
  3. http://mda.org/sites/default/files/FormerNationalGWA.pdf
  4. "Fill the Boot for MDA". MDA.org. Retrieved 2017-10-29.
  5. MDA: "MDA Labor Day Telethon Moves to Shorter Format", October 6, 2010.
  6. MDA press release, via Zap2it: "You’ll Never Walk Alone: Jerry Lewis To Make His Final Telethon Appearance", May 16, 2011.
  7. MDA: "Jerry Lewis Completes Run as MDA National Chairman", August 3, 2011. Archived August 4, 2011, at the Wayback Machine
  8. "MDA ends Jerry Lewis Labor Day telethon". USA TODAY. Retrieved 2017-10-29.
  9. "MDA Summer Camp". Muscular Dystrophy Association.
  10. "Participate in an Event | Muscular Dystrophy Association". Muscular Dystrophy Association. 2015-12-17. Retrieved 2017-10-29.
  11. "Diseases". Muscular Dystrophy Association.
  12. "CBO - H.R. 1281". Congressional Budget Office. Retrieved 24 June 2014.
  13. "Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417)". Muscular Dystrophy Association. Archived from the original on 24 October 2013. Retrieved 24 June 2014.
  14. "H.R. 594 - Summary". United States Congress. Retrieved 30 July 2014.
  15. "MD CARE Act Update (2014)". Muscular Dystrophy Association. Archived from the original on 25 June 2014. Retrieved 31 July 2014.
  16. "Charity Report for the Muscular Dystrophy Association". Give.org. Better Business Bureau. September 2015.
  17. MDA Charity Navigator Rating
  18. TheKidsAreAllRight documentary website about a renegade Jerry's Kid named Mike Ervin
  19. "The Nutty Profess-ion" article from Rabble News
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