Muscular Dystrophy Association


The Muscular Dystrophy Association is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related neuromuscular diseases. The organization was founded in 1950 by Paul Cohen, who lived with Facioscapulohumeral muscular dystrophy. MDA accelerates research, advances care, and works to empower families to live longer and more independent lives but is also perhaps known for its working relationship with comedian and actor Jerry Lewis and his annual Labor Day telethon, broadcast live from 1966 to 2010, starting Sunday evening and continuing into Monday evening. The organization's headquarters is in Chicago, Illinois.

History

The MDA was founded in 1950 by a group with personal connections to muscular dystrophy, including Paul Cohen who lived with Facioscapulohumeral muscular dystrophy. Originally known as the Muscular Dystrophy Associations of America, it was renamed to its present name in the 1970s.
In 1954, MDA began its partnership with the International Association of Fire Fighters for its annual Fill the Boot fundraising drive. In 1955, the organization held its first summer camp.
In 1980, American motorcycle manufacturer Harley Davidson became an MDA National Sponsor; in 1987 the MDA Ride For Life program began, a fundraising motorcycle ride held over Labor Day weekend. In 1986, oil and gas provider Citgo became a second national sponsor of the organization.
In 1982, the MDA Shamrocks program launched in Grand Rapids, Michigan, and became a national program one year later. 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.
Dr. Stanley Appel established Houston Methodist Hospital's amyotrophic lateral sclerosis clinic with MDA in 1982, which has evolved into the MDA ALS Research and Clinical Center at the Houston Methodist Neurological Institute. Dr. Appel's pioneering work includes the development of an immunotherapy treatment that may slow the progression of ALS. Dr. Appel's efforts were recognized by the MDA when he received the MDA's Tribute Award in 2022.
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. 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. Celebrity guests for the 2020 telethon included Jack Black, Josh Gad, Michael B. Jordan, and Jillian Mercado.
In November 2020, MDA launched a tool, called the neuroMuscular ObserVational Research Visualization and Reporting Platform, to help make clinical data more accessible and accelerate the discovery of muscular dystrophy treatments.
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. It also provided COVID-19 resources and recommendations for neuromuscular patients and providers via its online resource center. 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.
In January 2021, MDA announced NFL running back Nyheim Hines as its national spokesperson.
The Muscular Dystrophy Association was established to lead research and support for individuals affected by muscular dystrophy and related diseases.
In a 2024 interview with Denver Frederick, Dr. Donald Wood, CEO of MDA from 2020-2025, discussed the organization's founding legacy and its evolving role in reimagining support and research for the muscular dystrophy community. Dr. Wood highlighted MDA's commitment to continuing the vision of its founders through expanded programs and initiatives.
In March 2025, marking its 75th year, the association held its annual Clinical & Scientific Conference in Dallas, where discussions focused on legislative advocacy regarding air travel accessibility, disability rights, and the completion of universal newborn screening for Spinal Muscular Atrophy in the U.S.
In May 2025, Donald S. Wood, PhD, retired from the Muscular Dystrophy Association. Dr. Wood previously served as Vice Chair of the Board of Directors from 2017 to 2020 before becoming President. Sharon Hesterlee, PhD, who served as Chief Research Officer for the organization, was appointed President and CEO.

Awards

Research!America Advocacy Award
In 2025, MDA received the Research!America Advocacy Award in recognition of its work in research and advocacy for neuromuscular diseases.

Institutional Awards

  • **Paul G. Rogers Distinguished Organization Advocacy Award - Research!America Advocacy Awards **
MDA received this prestigious award for its advocacy and leadership in neuromuscular disease research and care.
  • **The Patient Advocacy Award - Advanced Therapies Awards **
Awarded to MDA's Gene Therapy Support Network for its contributions to advancing gene therapy initiatives.
  • **Print Publication Finalist - PR Daily Awards **
Recognized for MDA’s publication, *Quest Media Print*, showcasing efforts in communicating with patients and families.
  • **Sonia Skarlatos Public Service Award – American Society of Gene + Cell Therapy**
Awarded to MDA for excellence in public service within the scientific community.

Team/Group Awards

  • **Top 100 Marketing Teams - OnConference **
Acknowledging MDA’s Marketing and Communications team for their innovative strategies.
  • **Drive Purpose Campaign - PR Daily Content Marketing Awards **
For the #AccessibleAirTravel campaign that advocates for accessibility in air travel.
  • **Call to Action - 16th Annual Shorty Award Finalist and Audience Honor**
Recognized for the #AccessibleAirTravel campaign, promoting accessibility awareness.
  • **Call to Action – 9th Annual Shorty Award Finalist**
Acknowledging the impactful messaging of the #AccessibleAirTravel campaign.
  • **Federal Advocacy by a Patient Advocate or Organization - EveryLife Foundation RareVoice Awards **
Honoring MDA’s advocacy leaders Mindy Henderson and Madison Lawson for their impactful work.
Recognizing the #AccessibleAirTravel campaign for innovative communications strategies.

Individual Awards

Rhys Hoskins, an MDA advocate, received this award for his philanthropic efforts.
Awarded to Rhys Hoskins for his advocacy on behalf of MDA.
  • **The Top 50 Women Chief Development Officers of 2024 – Women We Admire**
Ruth Ann Daily, MDA's Chief Development Officer, received this honor for her leadership in philanthropy.
  • **Top Women in Marketing - Ragan Team Leaders **
Morgan Roth, MDA’s Chief Marketing Officer, was recognized for her strategic contributions to marketing.
  • **Top 50 Chief Operations Officer - OnConference **
Mike Kennedy, MDA’s Chief Financial Officer and Chief Operating Officer, was honored for his operational excellence.
  • **Henry Viscardi Achievement Award **
Awarded to Mindy Henderson, MDA’s Vice President of Disability Outreach & Empowerment, for her contributions to advocacy.
  • **Marcoms Most Influential List - The PRNet **
Mary Fiance, MDA’s Vice President of Strategic Communications, was recognized for her influence in communications.

National Ambassador

MDA has a tradition of selecting National Ambassadors who are people living with neuromuscular disease. Since the program's inception in 1952, over 45 National Ambassadors have shared their experiences to emphasize the need for funding research and developing treatments and cures for neuromuscular diseases. These representatives engage with partners, volunteers, supporters, and notable figures, gaining exposure through social media channels and national media outlets. Former youth ambassadors have pursued diverse fields in adulthood, advocating for improvements in accessibility, early intervention treatments through newborn screening, and advancements in research and care for MDA families and individuals living with disabilities. MDA's National Ambassadors were formerly known as "National Goodwill Ambassadors", 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. Another notable ambassador is Ethan LyBrand, who has Duchenne muscular dystrophy and gained national recognition for his Shorty Award-winning "Joke-A-Day for MDA" campaign during the COVID-19 pandemic.

Research

In 1986, MDA-funded researcher Louis M. Kunkel identified the dystrophin gene, the gene for Duchenne muscular dystrophy and Becker muscular dystrophy. MDA funded the first gene therapy trial in 1999, followed by the first vector-based gene therapy trial for DMD in 2006.
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.
As of 2018, MDA had a total funding commitment of more than $58 million distributed among 312 research grants. By 2019, MDA supported 252 research projects worldwide, totaling a funding commitment of more than $66 million.
MDA is actively involved in supporting the development of gene therapies for rare neuromuscular diseases. In 2023, the association introduced the Kickstart Program to lower the barriers to gene therapy development. The program assembles a team of experts to collaboratively assist selected projects, positioning them for follow-on grant funding. The Kickstart Program was presented at the 2023 MDA Clinical & Scientific Conference, where discussions focused on opportunities to de-risk gene therapies, current barriers to development, collaborative frameworks, and data management.
MDA supported the FDA's decision in 2023 to approve an experimental gene therapy developed by Sarepta Therapeutics that aims to slow the progression of Duchenne muscular dystrophy by facilitating the production of a protein called micro-dystrophin in patients' muscles. Advancements in Duchenne muscular dystrophy treatment have prompted MDA to lobby for newborn screening panels for early detection and treatment initiation.