Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) is an American 501(c)(3) umbrella organization that works to support people with neuromuscular diseases.[4] 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 and contributed more than $1 billion toward researching therapies and cures, helping to fund the identification of the dystrophin gene responsible for Duchenne muscular dystrophy as well as prospective treatments.[5]

Muscular Dystrophy Association
AbbreviationMDA
FormationJune 1950 (1950-06)
FounderPaul Cohen
Founded atNew York, New York
Typenon-profit
Tax ID no.
13-1665552
Focuspatient services, disease research, care and advocacy
Location
  • Chicago, Illinois
Region
United States
Key people
  • Donald Wood (CEO)[1]
  • Steven J. Farella (Chairman)[2]
Revenue
$110.7 million (in 2018)[3]
Websitewww.mda.org

Renowned for its annual Labor Day event, The Jerry Lewis Telethon, it aired from 1966 to 2010 and was hosted by Jerry Lewis, who also served as MDA's national chairman from 1956 to 2011. 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, Angela Lansbury and others have also supported MDA over the years.[6] The organization's headquarters is in Chicago, Illinois.

History

The organization was founded in 1950 by a group with personal connections to muscular dystrophy, including Paul Cohen who lived with the disease.[7] Originally known as the Muscular Dystrophy Associations of America, it was renamed to its present name in the 1970s.[6]

In 1954, MDA began its partnership with the International Association of Fire Fighters for its annual Fill the Boot fundraising drive.[8] In 1955, the organization held its first summer camp.[9]

In 1980, American motorcycle manufacturer Harley Davidson became an MDA National Sponsor;[10] in 1987 the MDA Ride For Life program began, a fundraising motorcycle ride held over Labor Day weekend.[11] In 1986, oil and gas provider Citgo became a second national sponsor of the organization.[12]

In 1982, the MDA Shamrocks program launched in Grand Rapids, Michigan, and became a national program one year later.[13] In 1996, MDA and Lewis were jointly honored by the American Medical Association with a lifetime achievement awards for their contributions to the health and welfare of humanity.[14]

In October 2020, the MDA Telethon, which had originally run from 1966 to 2014, was reimagined as The MDA Kevin Hart Kids Telethon after a six-year hiatus.[15] The two-hour event was held virtually due to the COVID-19 pandemic, and streamed live on the Laugh Out Loud network and its YouTube channel.[16] Celebrity guests for the 2020 telethon included Jack Black, Josh Gad, Michael B. Jordan, and Jillian Mercado.[17]

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.[18]

In response to the COVID-19 pandemic, MDA converted several of its traditional programs to virtual formats and introduced new virtual programming. The latter included several Facebook Live events discussing challenges that the pandemic placed on people with disabilities.[19][20] It also provided COVID-19 resources and recommendations for neuromuscular patients and providers via its online resource center.[21] Throughout stay at home orders due to the COVID-19 pandemic, MDA shared a "joke of the day" from National Ambassador Ethan Lybrand via their social media channels.[22]

January 2021, MDA announced Indianapolis Colts running back Nyheim Hines as its national spokesperson.[23]

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.[24] 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.

Research

In 1986, MDA-funded researcher Louis M. Kunkel identified the dystrophin gene, the gene for Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD).[25] MDA funded the first gene therapy trial in 1999, followed by the first vector based gene therapy trial for DMD in 2006.[26]

In 2007, MDA funded Adrian R. Krainer and his colleagues at the Cold Spring Harbor Laboratory in Laurel Hollow, New York for the early-stage development of nusinersen. Nusinersen became FDA approved in 2016 as the first treatment for spinal muscular dystrophy (SMA).[27]

As of 2018, MDA had a total funding commitment of more than $58 million distributed among 312 research grants.[28] By 2019, MDA supported 252 research projects worldwide, totaling a funding commitment of more than $66 million.[29]

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.[30]

Telethon

Debuting in 1966 and held annually on Labor Day weekend until 2014, the telethon was originally hosted by veteran film star, comedian and singer 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.[31] The 2011 edition of the telethon was originally announced to have been Lewis' last as host, with him continuing his role as national chairman;[32] however, on August 3, 2011, the MDA announced that Lewis resigned as host and chairman, due to circumstances not revealed.[33] 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.[34]

On September 9, 2020, MDA executives announced plans to relaunch their annual MDA telethon with a new host, comedian Kevin Hart.[35] 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.[36] 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 announced that it will use its portion of funds raised to "support education, health and social needs programs targeting underserved communities and servicing youth through education scholarships."[37] The telethon was accompanied by a 10-hour Let's Play livestream, called Let’s Play For A Cure, which featured DJ and producer Zedd, gaming personality missharvey and esports athletes.[38] The livestream was a part of a week-long "streamathon", which featured esports stars playing games including League of Legends, Rocket League, Fortnite, Call of Duty and Fall Guys.[39]

Following the Kevin Hart Kids Telethon was MDA’s 70th Anniversary Show, hosted by entertainment TV journalists Nancy O’Dell and Jann Carl.[38]

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 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,[40] cost of the camp for the campers and volunteers is covered by the many fundraisers the MDA does each year.[41]

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.[42]

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.[42]

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.[42]

Centers

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.[40] MDA’s Resource Center offers support and educational resources for families and healthcare providers affected by neuromuscular diseases.[43]

Diseases targeted

MDA targets the following muscle-affecting diseases:[44]

The organization also targets muscle diseases due to deficiencies in carnitine and the following enzymes:[44]

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.[45] 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."[46]

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).[47] 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."[48]

Charity assessments

According to a Better Business Bureau summary released in September 2015, the Organization:[49]

  • 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 one out of four stars based on Financial, Accountability, and Transparency Performance Metrics.[50]

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."[51]

References

  1. Miller, Hawken. "Q&A: Meet Donald Wood, the Muscular Dystrophy Association's New CEO and President". Muscular Dystrophy News. Retrieved 19 April 2021.
  2. "Steven J. Farella '77SVC Named MDA Board Chair". www.stjohns.edu. St. Johns. Retrieved 19 April 2021.
  3. "Charity Navigator - Rating for Muscular Dystrophy Association". Charity Navigator. Retrieved 19 April 2021.
  4. Andrews, Michelle (22 January 2021). "After a decade of lobbying, ALS patients gain faster access to disability payments". West Central Tribune. Retrieved 2021-04-23.{{cite web}}: CS1 maint: url-status (link)
  5. Hamilton, Jon (27 July 2020). "A Boy With Muscular Dystrophy Was Headed For A Wheelchair. Then Gene Therapy Arrived". NPR.org. Retrieved 2021-04-23.{{cite news}}: CS1 maint: url-status (link)
  6. "History". Muscular Dystrophy Association. 29 December 2015.
  7. Huang, Binghui (2017-09-02). "Jerry Lewis' work pays off in new drugs for muscular dystrophy". The Morning Call.
  8. "Cleveland Firefighters raise over $40,000 for MDA". The Place. Retrieved 2021-06-11.
  9. Cook, B.W. (2011-07-29). "The Crowd: Fundraiser helps summer camp programs". Daily Pilot. Retrieved 2021-06-11.{{cite web}}: CS1 maint: url-status (link)
  10. Staff, U. M. C. (2009-09-11). "Harley-Davidson contributes $4.5M to MDA". Ultimate Motorcycling. Retrieved 2021-06-11.
  11. PhD, Patricia Inacio. "Virtual Events Mark MDA's Muscular Dystrophy Awareness Month". Retrieved 2021-06-11.
  12. Burgeson, John (2016-12-19). "CITGO-sponsored golf tourney raises $100k for MD". Connecticut Post. Retrieved 2021-06-11.
  13. Barker, John (25 March 2013). "Kroger Customers Support MDA's Shamrocks Program". Patch.{{cite web}}: CS1 maint: url-status (link)
  14. "Jerry Lewis: Biography". KTRE.com. Retrieved 2021-06-11.{{cite web}}: CS1 maint: url-status (link)
  15. Strub, Chris. "After Six-Year Hiatus, Reimagined MDA Kevin Hart Kids Telethon Returns October 24". Forbes. Retrieved 2021-06-11.
  16. Miller, Hawken. "MDA Telethon Returning, Going Virtual With Host Kevin Hart". Retrieved 2021-06-11.
  17. Clolery, Paul. "MDA Getting Back In The Telethon Game". The NonProfit Times. Retrieved 2021-06-11.{{cite web}}: CS1 maint: url-status (link)
  18. Ray, Dr. Forest. "MDA Launches Tool to Make Clinical Data More Accessible to Researchers". Retrieved 2021-04-23.{{cite web}}: CS1 maint: url-status (link)
  19. Wexler, Marisa. "MDA Hosting Online Q&A on COVID-19 Today". ALS News Today. Retrieved 29 September 2021.
  20. Wexler, Marisa. "MD Advocates Offer Advice for Students With Neuromuscular Disorders Amid COVID-19". Muscular Distrophy. Retrieved 29 September 2021.
  21. Meglio, Marco. "Apic Bio plans to initiate a phase 1/2 clinical trial in late 2021 or early 2022 as a multi-center, 3-part study to evaluate APB-102 in patients with SOD1-ALS mutations". Neurology Live. Retrieved 29 September 2021.
  22. Waterfiled, Sophia (24 April 2020). "Fifth-Grader Tells a Joke a Day to Keep Americans Laughing During Coronavirus Pandemic". Newsweek. Retrieved 29 September 2021.
  23. Tannebaum, Taylor (11 February 2021). "Colts RB Nyheim Hines named national spokesperson for MDA". wthr.com. Retrieved 2021-07-07.{{cite web}}: CS1 maint: url-status (link)
  24. http://mda.org/sites/default/files/FormerNationalGWA.pdf
  25. Weidman Burke, Chelsea. "The Time for DMD Gene Therapy is Now: A Chat with the MDA". BioSpace. Retrieved 2021-07-07.{{cite web}}: CS1 maint: url-status (link)
  26. Agencies, United States Congress Senate Committee on Appropriations Subcommittee on Departments of Labor, Health and Human Services, Education, and Related (2001). Muscular Dystrophy: Hearing Before a Subcommittee of the Committee on Appropriations, United States Senate, One Hundred Seventh Congress, First Session, Special Hearing, February 27, 2001, Washington, DC. U.S. Government Printing Office. ISBN 978-0-16-065977-5.
  27. Neurology, The Lancet (2020-03-01). "Leading the way for neuromuscular disorders since 1950". The Lancet Neurology. 19 (3): 195. doi:10.1016/S1474-4422(20)30027-2. ISSN 1474-4422. PMID 32085828.
  28. Luxner, Larry. "MDA Conference Bringing Neuromuscular Disease Experts to Orlando to Share 'New Era' in Treatment, Research". CHarcot-Marie-Tooth News. Retrieved 29 September 2021.
  29. The Lancet Neurology (2020). "Leading the way for neuromuscular disorders since 1950". The Lancet Neurology. 19 (3): 195. doi:10.1016/S1474-4422(20)30027-2. PMID 32085828. Retrieved 29 September 2021.
  30. "Fill the Boot for MDA". MDA.org. Retrieved 2017-10-29.
  31. MDA: "MDA Labor Day Telethon Moves to Shorter Format", October 6, 2010.
  32. MDA press release, via Zap2it: "You’ll Never Walk Alone: Jerry Lewis To Make His Final Telethon Appearance", May 16, 2011.
  33. MDA: "Jerry Lewis Completes Run as MDA National Chairman", August 3, 2011. Archived August 4, 2011, at the Wayback Machine
  34. "MDA ends Jerry Lewis Labor Day telethon". USA TODAY. Retrieved 2017-10-29.
  35. "Kevin Hart's Muscular Dystrophy Association Telethon Relaunch Adds to Lineup; Will Stream on LOL Network – Update". 8 October 2020.
  36. MDA Press Release: "Muscular Dystrophy Association Announces Relaunch of Iconic Telethon Hosted by Actor & Comedian Kevin Hart"
  37. "Kevin Hart to helm famed MDA telethon hosted for decades by Jerry Lewis". 9 September 2020.
  38. Miller, Hawken. "MDA Telethon Returning, Going Virtual With Host Kevin Hart". Retrieved 2021-07-07.
  39. Takahashi, Dean (2020-09-29). "Muscular Dystrophy Association's Let's Play For A Cure targets gamers". VentureBeat. Retrieved 2021-07-07.{{cite web}}: CS1 maint: url-status (link)
  40. Frank, Grace. "From Care Centers to Summer Camp, MDA Leads in Helping Others". Retrieved 2021-04-23.
  41. "MDA Summer Camp". Muscular Dystrophy Association. 22 December 2017.
  42. "Participate in an Event | Muscular Dystrophy Association". Muscular Dystrophy Association. 2015-12-17. Retrieved 2017-10-29.
  43. "Dollars to help strengthen communities". Capital Press. Retrieved 2021-04-23.
  44. "Diseases". Muscular Dystrophy Association. 28 March 2018.
  45. "CBO - H.R. 1281". Congressional Budget Office. 6 June 2014. Retrieved 24 June 2014.
  46. "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.
  47. "H.R. 594 - Summary". United States Congress. Retrieved 30 July 2014.
  48. "MD CARE Act Update (2014)". Muscular Dystrophy Association. Archived from the original on 25 June 2014. Retrieved 31 July 2014.
  49. "Charity Report for the Muscular Dystrophy Association". Give.org. Better Business Bureau. September 2015.
  50. MDA Charity Navigator Rating
  51. TheKidsAreAllRight documentary website about a renegade Jerry's Kid named Mike Ervin
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