About Us

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

Press Releases

  • Closer Than Ever Before

    The landscape for Duchenne muscular dystrophy (DMD) has changed significantly over the last six decades, with advances in comprehensive and supportive care — particularly respiratory and cardiac care — influencing the natural course of the disease and resulting in better quality of life and a longer lifespan. Children with this devastating disease used to live into their late teens. Now they’re routinely living into their late 20s and longer. They’re going to college, advancing their careers and starting families of their own.

  • Congress Passes Bill to Increase National Institutes of Health Funding by $2 Billion

    Background: Ensuring increased funding for the National Institutes of Health (NIH) has been one of MDA’s top 2015 policy priorities. Through targeted efforts in Washington, DC and with strong support from advocates across the country, MDA, along with many other organizations, has urged Congress to boost funding for NIH. Today, Congress passed the FY 2016 spending bill with a $2 billion increase for NIH— representing the largest increase in NIH funding in more than a decade.

  • Five Questions with DMD Researcher James Ervasti

    James Ervasti, professor in the department of biochemistry, molecular biology & biophysics at the University of Minnesota in Minneapolis, is working to develop methods of identifying non-invasive biomarkers that can be measured in all patients across the entire spectrum of Duchenne muscular dystrophy (DMD) disease severity.

    Please describe your current research in DMD.

  • Supreme Court Upholds Nationwide Health Care Law Subsidies in ACA Ruling

    Background: On June 25th, 2015 the United States Supreme Court ruled to uphold nationwide health care law subsidies. Under the Affordable Care Act (ACA), states were tasked with setting up their own exchanges where individuals could purchase healthcare. Some states created exchanges, while others opted to use exchanges run by the federal government. The question at issue in the Supreme Court case King v.

  • MDA Mourns the Loss of Former National Goodwill Ambassador Mike Neufeldt

    Today the Muscular Dystrophy Association (MDA) mourns the loss of Mike Neufeldt, 37, of New Berlin, Wis. — a voluntary leader, ambassador and beloved member of the MDA family who had a tremendous positive impact on MDA’s mission to save and improve the lives of those fighting neuromuscular diseases, including the Emery-Dreifuss muscular dystrophy Neufeldt battled since childhood.

  • Catalyst Pharmaceuticals Conducting Trial to Test Amifampridine Phosphate (FIRDAPSE®) in Children with Congenital Myasthenic Syndromes

    Statement from Catalyst: Amifampridine phosphate in CMS Clinical Trial

    Researchers are looking for children, ages 2 to 17 years, with congenital myasthenic syndrome (CMS) to participate in a new phase 3 study being conducted by Catalyst Pharmaceuticals to test the experimental drug amifampridine phosphate.