The MDF went to Washington, DC, last week to represent the DM community and participate in the Rare Disease Legislative Advocates Conference and Lobby Day.
The Myotonic Dystrophy Foundation (MDF) is a non-profit organization founded in 2007 by families living with myotonic dystrophy (DM). Through community support, education, advocacy, and research MDF is committed to enhancing the quality of life of people living with myotonic dystrophy, and maximizing efforts focused on treatments and a cure for DM.
Based in San Francisco, California, MDF partners with, and complements the work of, the Muscular Dystrophy Association (MDA), the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDCP), and other governmental, academic, and philanthropic agencies.
The MDF team includes the staff, the Board of Directors, which is made up of volunteer leaders from the private and governmental sectors, many of whom have families impacted by the disease, and the MDF Medical and Scientific Advisory Committee, a group of leading myotonic dystrophy specialists and researchers from academic, clinical, and government organizations.
Please contact us if you have any questions, and thank you for your continued support and interest in myotonic dystrophy.