Muscular Dystrophy Association
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|Founded at||New York, NY|
|Focus||patient services, disease research, care and advocacy|
|$110.7 million (in 2018)|
The Muscular Dystrophy Association (MDA) is an American 501(c)3 umbrella organization that works to support people with neuromuscular diseases. The association was founded in 1950 by Paul Cohen, who lived with muscular dystrophy. It works to combat neuromuscular disorders by funding research, providing medical and community services and educating health professionals and the general public. Since its founding, MDA has contributed more than $1 billion toward researching therapies and cures, including helping to fund the identification of the dystrophin gene responsible for Duchenne muscular dystrophy as well as prospective treatments.
MDA is also notable for its 55-year working partnership with comedian, actor, singer and filmmaker Jerry Lewis, who served as its national chairman from 1956 to 2011 while hosting his live annual telethon each Labor Day weekend from 1966 to 2010. 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. The organization's headquarters is in Chicago, Illinois.
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The organization was founded in 1950 by a group with personal connections to muscular dystrophy, including Paul Cohen who suffered from the disease. Originally known as the Muscular Dystrophy Associations of America, it was renamed to its present name in the 1970s.
In November 2020, MDA launched a tool, called the neuroMuscular ObserVational Research (MOVR) Visualization and Reporting Platform (VRP), to help make clinical data more accessible and accelerate discovery of muscular dystrophy treatments.
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. 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, North Carolina, who is affected by Duchenne muscular dystrophy and 9-year-old Reagan Imhoff of New Berlin, Wisconsin.
Programs and Events
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.
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.
Originally broadcast for up to 21½ hours from 1966 to 2010, the event was cut back to six hours in 2011. The 2011 edition of the telethon was originally announced to have been Lewis' last as host, with him continuing his role as national chairman; however, on August 3, 2011, the MDA announced that Lewis resigned as host and chairman, due to circumstances not revealed. 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 was 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 early 2015, the organization announced it was discontinuing the show.
On September 9, 2020, MDA executives announced plans to relaunch their annual MDA telethon with a new host, comedian Kevin Hart.  Entitled The MDA Kevin Hart Kids Telethon, the new two-hour telethon was seen exclusively through participating social media platforms; the event was broadcast October 24, 2020 at 8 p.m. EDT. The special was a dual-charity event, with proceeds going towards both MDA and "Help From The Hart", an organization founded by the aforementioned new host of the program. Hart's charity will use their portion of funds raised to "support education, health and social needs programs targeting under-served communities and servicing youth through education scholarships." 
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 8–17, 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 camp is offered at no cost to campers and their families, cost of the camp for the campers and volunteers is covered by the many fundraisers the MDA does each year.
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.
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.
MDA provides both "Care Centers" across the US and a Resource Center that serves a US audience. MDA’s care center network provides specialized neuromuscular care at more than 150 clinics across the United States. Research is also conducted at these centers. MDA’s Resource Center offers support and educational resources for families and healthcare providers affected by neuromuscular diseases.
MDA targets the following muscle-affecting diseases:
- amyotrophic lateral sclerosis
- Becker's muscular dystrophy
- central core disease
- centronuclear myopathy (including myotubular myopathy)
- Charcot–Marie–Tooth disease
- congenital muscular dystrophy
- congenital myasthenic syndrome
- Dejerine–Sottas disease
- Duchenne muscular dystrophy
- Emery–Dreifuss muscular dystrophy
- facioscapulohumeral muscular dystrophy
- Friedreich's ataxia
- hyperthyroid myopathy
- hypothyroid myopathy
- inclusion body myositis
- Lambert–Eaton myasthenic syndrome
- Limb-girdle muscular dystrophy
- mitochondrial myopathy
- myasthenia gravis
- myotonia congenita, both Thomsen's disease and Becker disease
- nemaline myopathy
- paramyotonia congenita
- periodic paralysis, both hypokalemic and hyperkalemic
- spinal and bulbar muscular atrophy
- spinal muscular atrophy
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. 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."
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). 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."
- 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.
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." 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.
- Miller, Hawken. "Q&A: Meet Donald Wood, the Muscular Dystrophy Association's New CEO and President". Muscular Dystrophy News. Retrieved 19 April 2021.
- "Steven J. Farella '77SVC Named MDA Board Chair". www.stjohns.edu. St. Johns. Retrieved 19 April 2021.
- "Charity Navigator - Rating for Muscular Dystrophy Association". Charity Navigator. Retrieved 19 April 2021.
- Andrews, Michelle. "After a decade of lobbying, ALS patients gain faster access to disability payments". West Central Tribune. Retrieved 2021-04-23.
- Hamilton, Jon. "A Boy With Muscular Dystrophy Was Headed For A Wheelchair. Then Gene Therapy Arrived". NPR.org. Retrieved 2021-04-23.
- "History". Muscular Dystrophy Association.
- Huang, Binghui (2017-09-02). "Jerry Lewis' work pays off in new drugs for muscular dystrophy". The Morning Call.
- Ray, Dr. Forest. "MDA Launches Tool to Make Clinical Data More Accessible to Researchers". Retrieved 2021-04-23.
- "Fill the Boot for MDA". MDA.org. Retrieved 2017-10-29.
- MDA: "MDA Labor Day Telethon Moves to Shorter Format", October 6, 2010.
- MDA press release, via Zap2it: "You’ll Never Walk Alone: Jerry Lewis To Make His Final Telethon Appearance", May 16, 2011.
- MDA: "Jerry Lewis Completes Run as MDA National Chairman", August 3, 2011. Archived August 4, 2011, at the Wayback Machine
- "MDA ends Jerry Lewis Labor Day telethon". USA TODAY. Retrieved 2017-10-29.
- MDA Press Release: "Muscular Dystrophy Association Announces Relaunch of Iconic Telethon Hosted by Actor & Comedian Kevin Hart"
- Frank, Grace. "From Care Centers to Summer Camp, MDA Leads in Helping Others". Retrieved 2021-04-23.
- "MDA Summer Camp". Muscular Dystrophy Association.
- "Participate in an Event | Muscular Dystrophy Association". Muscular Dystrophy Association. 2015-12-17. Retrieved 2017-10-29.
- "Dollars to help strengthen communities". Capital Press. Retrieved 2021-04-23.
- "Diseases". Muscular Dystrophy Association.
- "CBO - H.R. 1281". Congressional Budget Office. Retrieved 24 June 2014.
- "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.
- "H.R. 594 - Summary". United States Congress. Retrieved 30 July 2014.
- "MD CARE Act Update (2014)". Muscular Dystrophy Association. Archived from the original on 25 June 2014. Retrieved 31 July 2014.
- "Charity Report for the Muscular Dystrophy Association". Give.org. Better Business Bureau. September 2015.
- MDA Charity Navigator Rating
- TheKidsAreAllRight documentary website about a renegade Jerry's Kid named Mike Ervin
- "The Nutty Profess-ion" article from Rabble News