Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived with muscular dystrophy, MDA accelerates research, advances care, and works to empower families to live longer and more independent lives.[5][6] Renowned for The MDA Labor Day Telethon, the annual telecast aired live every Labor Day weekend from 1966 to 2010, hosted by Jerry Lewis, who also served as MDA's national chairman. Also, Don Rickles, Frank Sinatra, 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 supported MDA over the years.[7] The organization's headquarters is in Chicago, Illinois.[8]
Abbreviation
MDA
June 1950
Paul Cohen
New York City, U.S.
13-1665552
patient services, disease research, care and advocacy
- Chicago, Illinois, U.S.
- Donald S. Wood (CEO)[1]
- Former Governor Brad Henry (Chairman)[2]
- Sharon Hesterlee, Ph.D. (Chief Research Officer)[3]
$63.7 million (in 2020)[4]
Diseases targeted[edit]
MDA targets a wide range of neuromuscular diseases, including muscular dystrophies, motor neuron diseases, ion channel diseases, mitochondrial diseases, myopathies, neuromuscular junction diseases, and peripheral nerve diseases. Specific examples include Duchenne Muscular Dystrophy, a severe form of muscular dystrophy, and Charcot-Marie-Tooth disease, which impacts peripheral nerves. MDA's scope also includes numerous rare disorders, such as Andersen-Tawil syndrome, Laing distal myopathy, and Walker-Warburg syndrome.[62]
Legislation[edit]
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.[63] 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."[64]
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).[65] 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."[66]
In December 2021, President Joe Biden signed the Accelerating Access to Critical Therapies for ALS Act into law. The act aimed to speed up the development and approval of therapies for ALS and other neuromuscular diseases. During the signing ceremony President Biden acknowledged the Muscular Dystrophy Association for playing a crucial role in advocating for the legislation.[67]
Charity assessments[edit]
MDA is recognized by the Better Business Bureau's Wise Giving Alliance as an accredited charity that meets all 20 Standards for Charity Accountability. As of the year ending December 31, 2022, MDA reported significant funding directed towards patient and community services, professional public health education, and research. The organization's financial activities, leadership compensation, and fundraising methods are transparently disclosed, emphasizing their commitment to accountability and ethical practices.[68] 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.[69] CharityWatch had also given MDA a grade of D, citing many financial issues in the organization.[70]