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Muscular Dystrophy Association
The Muscular Dystrophy Association was founded in 1950 by Paul Cohen and a group of parents seeking a cure for muscular dystrophy.
Muscular Dystrophy Association
The Muscular Dystrophy Association was founded in 1950 by Paul Cohen and a group of parents seeking a cure for muscular dystrophy. The organization has grown into the largest US nonprofit focused on neuromuscular diseases, with headquarters in Tucson and regional offices in Chicago and New York. Its principal wealth originates from public donations, corporate partnerships, and government grants. MDA's strategy spans the full translational research pipeline. It funds basic science, drug discovery, and clinical trials across muscular dystrophy subtypes, spinal muscular atrophy, and ALS. Its portfolio includes over 150 active research projects at institutions like the University of Texas Southwestern and the University of Florida. MDA also operates a network of 150 MDA Care Centers providing multidisciplinary clinical care. The organization engages in advocacy with Congress and federal agencies to accelerate drug development and access. MDA employs a small professional staff with a board of directors led by Grace V. George. Its annual research deployment exceeds $150 million. In June 2024, MDA launched a new drug development initiative partnering with the biotechnology firm Dyne Therapeutics to advance therapies for Duchenne and myotonic dystrophy (per MDA, June 2024). MDA's structural differentiator is its direct oversight of both research funding and clinical care delivery. The integration of a nationwide clinic network with a targeted grant portfolio creates a feedback loop between patient needs and scientific priorities — rare among disease-focused foundations.
General information
Firm type
Foundation
Year founded
1950
AUM
Undisclosed
Location
Region
North America
Country
United States
City
Tucson
Corporate office
Tucson, AZ, United States
Additional offices
Chicago, IL, United States · New York, NY, United States
Principals
Donald S. Wood
President and CEO
Grace V. George
Chair of the Board of Directors
Sector focus
Frequently asked questions
Who leads investment decisions at the Muscular Dystrophy Association?
Donald S. Wood serves as President and CEO, overseeing both research funding allocation and clinical operations. The Board of Directors, chaired by Grace V. George, provides strategic oversight (per MDA, 2024).
How does MDA allocate its research funding?
MDA funds over 150 research projects annually across universities and biotech firms. It uses a peer-review process modeled on the NIH, with grants covering basic science, translational research, and clinical trials (per MDA, 2024).
Does MDA participate in drug development directly?
MDA primarily operates as a grant-making foundation, but it also engages in direct partnerships with biotech companies. The June 2024 agreement with Dyne Therapeutics exemplifies its active role in advancing specific therapies (per MDA, June 2024).
What is MDA's geographic footprint for care clinics?
MDA supports 150 certified care clinics across the United States, providing multidisciplinary care in neurology, cardiology, and pulmonary medicine. The clinic network extends to all 50 states (per MDA, 2024).
Where does MDA's funding come from?
MDA's revenue comes from public donations, corporate partnerships, government grants, and its annual telethon, which has evolved into the MDA Muscle Walk program. The organization reports its finances publicly (per MDA, 2024).
How is MDA structured differently from a venture philanthropy firm?
MDA combines grant-making with direct healthcare delivery through its clinic network. This integration is distinct from venture philanthropy models like the Cystic Fibrosis Foundation, which rely more heavily on royalty-based drug investments.
What diseases does MDA focus on beyond muscular dystrophy?
MDA covers over 40 neuromuscular conditions, including spinal muscular atrophy, amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth disease, and myasthenia gravis (per MDA, 2024).
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