Muscular Dystrophy Association
The Muscular Dystrophy Association is a United States nonprofit dedicated to research, clinical care, advocacy, and support for people living with muscular dystrophy, ALS, and related neuromuscular diseases.
Last updated August 26, 2026
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Overview
The Muscular Dystrophy Association (MDA) is an American nonprofit organization serving people affected by muscular dystrophy, amyotrophic lateral sclerosis (ALS), spinal muscular atrophy, and other neuromuscular diseases. Founded in 1950 by people with personal connections to muscular dystrophy, including Paul Cohen, the organization combines medical research funding, multidisciplinary clinical care, family services, education, disability advocacy, and public fundraising. Its headquarters are in Chicago, Illinois, and its principal operating market is the United States. MDA developed a highly recognizable public identity through its long association with comedian, actor, and singer Jerry Lewis. Lewis served as the organization’s national chairman and hosted its Labor Day telethon from 1966 through 2010. The broadcast, later called the MDA Show of Strength, ran for many hours and became one of the most prominent recurring charity programs in American television. Its beneficiaries were popularly described as “Jerry’s Kids.” The traditional telethon ended after the 2014 edition, but MDA later experimented with digital fundraising and revived the format in 2020 as The MDA Kevin Hart Kids Telethon, a virtual two-hour event during the COVID-19 pandemic. Fundraising partnerships have also been central to MDA’s brand. The International Association of Fire Fighters selected MDA as its charity partner in 1954, creating the long-running Fill the Boot campaign. Firefighters collect donations to support research, care, and advocacy. Other programs have included summer camps, the Shamrocks campaign, motorcycle fundraising through Ride for Life, and ambassador programs featuring children and adults living with neuromuscular disease. Research is a major part of MDA’s institutional role. The association funded work that contributed to the identification of the dystrophin gene in 1986, supported early gene-therapy research, and helped finance early development of nusinersen, which became the first FDA-approved treatment for spinal muscular atrophy in 2016. In more recent years, MDA has supported gene-therapy development, clinical data infrastructure, newborn screening advocacy, and access to approved treatments. Its neuroMuscular ObserVational Research Visualization and Reporting Platform was introduced in 2020 to make clinical research data more accessible. MDA’s current positioning combines patient advocacy with translational science: it seeks to shorten the path from laboratory research to treatments while helping families manage disability, healthcare, education, employment, and independent living. The organization also advocates for accessible air travel, early diagnosis, and universal newborn screening for spinal muscular atrophy. In 2023 it introduced the Kickstart Program to help promising gene-therapy projects overcome development barriers. In 2025, during its 75th anniversary year, MDA emphasized legislative advocacy, disability rights, air-travel accessibility, and completion of universal SMA newborn screening in the United States. Donald S. Wood retired as president and CEO in May 2025 and was succeeded by Sharon Hesterlee.
History
The Muscular Dystrophy Association was established in 1950 by a group whose members had direct personal experience with muscular dystrophy. Paul Cohen, who lived with facioscapulohumeral muscular dystrophy, is identified as a founder. The organization initially operated under the name Muscular Dystrophy Associations of America and adopted its present name during the 1970s. From the beginning, its purpose was broader than fundraising: MDA sought to support affected families while financing research and improving medical understanding of neuromuscular disease. The association’s public fundraising network expanded rapidly. In 1952 it introduced its first poster child, Michael Danna, beginning a long-running ambassador tradition in which people living with neuromuscular disease represented the organization in public outreach. In 1954 MDA formed its enduring partnership with the International Association of Fire Fighters, whose Fill the Boot collections became one of the association’s most important annual campaigns. MDA also launched its first summer camp in 1955, providing a recreational and supportive setting for children with neuromuscular conditions. Television transformed MDA’s visibility. The first Jerry Lewis Labor Day telethon aired in 1966. Lewis became the organization’s best-known public advocate, and the program grew into a major national broadcast fundraiser. It originally occupied as much as 21.5 hours of television, although the runtime was reduced substantially in later years. In 2005, MDA directed $1 million from telethon proceeds to the Salvation Army for Hurricane Katrina relief. The 2008 broadcast reported a record total of $65,031,393. Lewis hosted through 2010 and resigned as both host and national chairman in 2011. From 2012 to 2014 the program was known as the MDA Show of Strength; MDA discontinued the traditional broadcast after 2014. MDA continued developing event-based and community fundraising. Harley-Davidson became a national sponsor in 1980, the Shamrocks program began in 1982 and became national in 1983, and the Ride for Life motorcycle fundraiser began in 1987. Citgo became another national sponsor in 1986. MDA’s clinical and research partnerships also expanded. In 1982, neurologist Stanley Appel established an ALS clinic with MDA at Houston Methodist Hospital; the collaboration developed into the MDA ALS Research and Clinical Center at the Houston Methodist Neurological Institute. Research support produced several important milestones. MDA-funded work contributed to Louis Kunkel’s identification of the dystrophin gene in 1986, a key discovery for Duchenne and Becker muscular dystrophy. The association funded an early gene-therapy trial in 1999 and a vector-based Duchenne trial in 2006. In 2007 it supported Adrian Krainer and colleagues during early development of nusinersen, later approved in 2016 as the first treatment for spinal muscular atrophy. MDA subsequently increased its focus on gene therapy, data sharing, clinical development, and access to emerging treatments. The organization adapted its services during the COVID-19 pandemic, shifting programs online, publishing medical and practical guidance, and hosting disability-focused live discussions. Ethan LyBrand’s social-media “Joke-A-Day for MDA” helped maintain public engagement. In 2020 MDA also introduced the MOVR Visualization and Reporting Platform, and in October of that year launched The MDA Kevin Hart Kids Telethon as a virtual successor to its historic broadcast. The event included celebrity participation and combined MDA fundraising with support for Kevin Hart’s charity. In the 2020s MDA positioned itself increasingly as a bridge between scientific innovation and patient access. It created the Kickstart Program in 2023 to reduce obstacles in gene-therapy development and continued advocating for newborn screening, accessible air travel, and disability rights. MDA supported the 2023 FDA approval of a Sarepta Therapeutics gene therapy for Duchenne muscular dystrophy, while emphasizing the need for early diagnosis and equitable access. During its 75th anniversary year in 2025, the association continued its clinical, scientific, and legislative work. Donald S. Wood, who had led the organization as CEO since 2020, retired in May 2025; Sharon Hesterlee, formerly chief research officer, succeeded him.
- 2025
75th anniversary leadership transition
[1]MDA marked 75 years, and Sharon Hesterlee became president and CEO after Donald Wood’s retirement.
- 2023
Kickstart Program introduced
[1]MDA created a collaborative program to help move promising gene-therapy projects toward additional funding and development.
- 2020
Digital telethon and MOVR platform
[1]MDA launched a virtual Kevin Hart telethon and introduced its MOVR data visualization and reporting platform.
- 2016
Nusinersen approved
[1]Nusinersen, whose early development received MDA support, became the first FDA-approved treatment for spinal muscular atrophy.
- 1999
Early gene-therapy trial funded
[1]MDA funded an early gene-therapy clinical trial.
- 1986
Dystrophin gene discovery supported
[1]MDA-funded research contributed to identification of the dystrophin gene.
- 1966
Jerry Lewis telethon debuts
[1]MDA’s Labor Day telethon began its long run as a nationally televised fundraiser.
- 1955
First summer camp
[1]MDA began its summer-camp program for children affected by neuromuscular disease.
- 1954
Fill the Boot partnership begins
[1]The International Association of Fire Fighters selected MDA as its charity partner.
- 1952
First national ambassador tradition begins
[1]Michael Danna became the association’s first poster child, beginning the modern national ambassador program.
Products and positioning
A national patient-advocacy and medical-research nonprofit that connects families affected by neuromuscular disease with care, community support, scientific advances, and disability-policy advocacy.
Fundraising campaign · 1954
Fill the Boot
A nationwide collection program conducted with the International Association of Fire Fighters. Firefighters solicit donations, traditionally at roadsides and community events, to support MDA research, clinical care, family services, and advocacy.
Community and family program · 1955
MDA Summer Camp
A recreational camp program designed for children and young people living with neuromuscular disease. It provides an accessible social environment and experiences intended to promote independence, confidence, and connection among families.
Research data platform · 2020
MOVR Visualization and Reporting Platform
A tool for presenting and exploring data from MDA’s neuromuscular observational research activities. Its purpose is to make clinical information more usable for researchers and help accelerate treatment discovery.
Gene-therapy development program · 2023
Kickstart Program
A collaborative initiative that brings technical and scientific expertise to selected gene-therapy projects. It is intended to lower development barriers and improve the projects’ readiness for subsequent grant support and translation.
Televised and digital fundraiser · 1966
MDA Telethon
MDA’s signature public fundraising event began as a Labor Day television broadcast hosted by Jerry Lewis. After the traditional broadcast ended, the format was reworked digitally, including the 2020 MDA Kevin Hart Kids Telethon.
Controversies
Scrutiny of Fill the Boot partnership payments
Public discussion examined annual payments MDA made to the International Association of Fire Fighters in connection with the Fill the Boot partnership. Reported payments between 2015 and 2020 were cited in relation to the charity’s expenditure structure.
Marketing campaigns
- 2023#AccessibleAirTravel
United States
An advocacy and communications campaign focused on improving air-travel accessibility for people with disabilities and neuromuscular disease.
Outcome. Received recognition in communications and public-affairs award programs
- 2020MDA Kevin Hart Kids Telethon
United States · Digital platforms
A two-hour virtual telethon hosted by Kevin Hart, streamed through digital platforms during the COVID-19 pandemic and structured as a dual-charity event.
Outcome. Reintroduced the telethon concept in a digital format
- 1987Ride for Life
United States
A motorcycle fundraising ride associated with Labor Day weekend and MDA’s motorcycle-community outreach.
Outcome. Established a recurring fundraising event
- 1982MDA Shamrocks
United States
A retail and community fundraising program launched in Grand Rapids, Michigan, before expanding nationally the following year.
Outcome. National fundraising program
- 1966Jerry Lewis Labor Day Telethon
United States
A nationally televised fundraiser hosted by Jerry Lewis raised money and awareness for MDA for decades.
Outcome. Became one of the organization’s defining public institutions; the traditional broadcast ended after 2014.
- 1954Fill the Boot
United States
MDA and the International Association of Fire Fighters began a recurring firefighter-led fundraising partnership that became a central source of public awareness and charitable support.
Outcome. Long-running national fundraising program
Brand decisions
2025
CEO successionOtherBackground
Donald S. Wood had served as president and CEO since 2020 after earlier service as MDA board vice chair.
Action taken
Wood retired, and Chief Research Officer Sharon Hesterlee was appointed president and CEO.
Aftermath
The transition placed a research executive at the head of the association during its 75th anniversary year.
2023
Kickstart gene-therapy programProduct launchBackground
Promising gene therapies can face scientific, operational, and development barriers before they are ready for larger funding or clinical translation.
Action taken
MDA created Kickstart to provide selected projects with coordinated expert assistance.
Aftermath
The program reinforced MDA’s role in reducing translational barriers in rare-disease therapy development.
2020
Launch of MOVR platformProduct launchBackground
Neuromuscular research generates clinical information that can be difficult for researchers and other stakeholders to access and interpret.
Action taken
MDA introduced the MOVR Visualization and Reporting Platform to improve access to observational research data.
Aftermath
The platform became part of MDA’s effort to support data-driven treatment development.
2015
Traditional telethon discontinuedStrategyBackground
The long-running Labor Day television fundraiser had already been shortened and rebranded after Lewis’s departure.
Action taken
MDA announced that it would end the traditional telethon format.
Aftermath
The organization later returned to the concept with a digitally delivered Kevin Hart telethon in 2020.
2011
Jerry Lewis leaves the telethon and chairmanshipStrategyBackground
After hosting the telethon through 2010, Jerry Lewis was initially expected to continue in a different role.
Action taken
MDA announced that Lewis had resigned as host and national chairman, without disclosing the circumstances.
Aftermath
The telethon continued with other hosts and was later renamed the MDA Show of Strength before the traditional broadcast was discontinued.
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