About Us

We're here to transform the lives of people affected by neuromuscular disease.

Press Releases

  • MDA Taps Global Health Care Leader as CEO to Leverage New Breakthroughs and Amplify Mission

    Lynn O’Connor Vos will lead new era of neuromuscular disease research and services to transform and save lives

    CHICAGO, October 10, 2017 — After a nationwide search, the Muscular Dystrophy Association (MDA) today announced it has appointed Lynn O’Connor Vos as President and Chief Executive Officer. Vos previously was Global Chief Executive Officer of Greyhealth Group (ghg), a leading health care communications agency and part of the global WPP Group.

  • MDA Offers Limb-Girdle Muscular Dystrophy (LGMD) Genetic Testing Program at No Cost to Families

    MDA, Sanofi Genzyme and EGL Genetics team up to expand access to genetic testing for accurate diagnosis of cause of limb-girdle muscle weakness
    September 30 is LGMD Awareness Day

    CHICAGO, Sept. 28, 2017 — In conjunction with Limb-Girdle Muscular Dystrophy Awareness Day (Sept. 30), the Muscular Dystrophy Association (MDA) announced today that thanks to additional support from Sanofi Genzyme, and in collaboration with EGL Genetics, MDA Care Centers and Care Affiliates are offering genetic testing for individuals experiencing limb-girdle muscle weakness and who do not already have a confirmed genetic diagnosis. This advancement in diagnosis will help more individuals living with unexplained limb-girdle muscle weakness, and their clinicians, find the most accurate treatment path available.

  • Muscular Dystrophy Association and Strength, Science & Stories of Inspiration to Announce Neuromuscular Disease Fellowship Award

    Recipient to be honored at SSSI’s 4th Annual Benefit Event

    CHICAGO, Sept. 28, 2017 — The Muscular Dystrophy Association (MDA) and Strength, Science & Stories of Inspiration (SSSI) will honor the recipient of the 2017 SSSI-MDA Fellowship Award at SSSI’s 4th Annual Benefit event on Sunday, Oct. 1, 2017. The fellowship will provide $40,000 over two years to a promising postdoctoral scholar, Maya Maor Nof, from Stanford University to support a high-risk, high reward research project in neuromuscular disease.

  • MDA’s ‘Live Unlimited’ Campaign Urges Americans to Support Families with Neuromuscular Disease

    CHICAGO, September 20, 2017 — The Muscular Dystrophy Association (MDA) today launched its 2017 “Live Unlimited” campaign set to run through Oct.11, 2017. The three-week awareness and fundraising campaign will feature the “Live Unlimited” stories of three families impacted by a neuromuscular disease who challenged themselves to defy their own perceived limitations. The stories chronicle best friends who crossed the Camino de Santiago together, one woman’s hike across the Pacific Coast Trail and a family from Los Angeles uniting to give their young son a chance to pursue his dreams. MDA is sharing these powerful stories with the American public to help raise awareness and to help more kids and adults living with muscular dystrophy, ALS and related life-threatening diseases feel empowered to pursue their personal and professional goals — to live unlimited.

  • MDA Awards Human Clinical Trial Grant for Myotonic Dystrophy Natural History Study

    CHICAGO, August 30, 2017 – The Muscular Dystrophy Association (MDA) is pleased to announce the award of a human clinical trial grant to Nicholas Johnson, M.D., assistant professor of neurology, pediatrics and pathology at the University of Utah in Salt Lake City, to conduct a natural history study in congenital myotonic dystrophy (congenital DM1). The award, which totals $598,348 over three years, reflects MDA’s commitment to support research that can improve and accelerate the development of future clinical trials, with the ultimate goal being the development of treatments and cures for all the diseases in its program.

  • Jerry Lewis, Longtime MDA National Chairman, Telethon Star and Humanitarian, Dies

    CHICAGO, August 20, 2017 — The Muscular Dystrophy Association is deeply saddened by the death of beloved comedian, performer, humanitarian and former MDA telethon star and national chairman Jerry Lewis. The comic film legend, who led the fight against muscular dystrophy and related neuromuscular diseases for more than 50 years, died today in Las Vegas. He was 91.