About Us
Dedicated to Making a Difference
The Myotonic Dystrophy Foundation (MDF) is a non-profit, 501(c)(3) organization founded by families living with myotonic dystrophy (DM). Through education, advocacy and research, MDF is committed to establishing a voice and a face for this disorder. We work in tandem with medical and scientific leaders to mobilize resources in order to develop treatments and ultimately a cure for this disease.
The MDF evolved during the International Myotonic Dystrophy Consortium (IDMC-5) held in Quebec, Canada in October 2005 when a group of American family members was convened over dinner to discuss the creation of a national advocacy organization for people living with myotonic dystrophy.
Based in Roseville, California, 20 miles north of Sacramento, the MDF has formed strategic alliances with several independent organizations to raise funds for DM research. The MDF complements the existing efforts of the Muscular Dystrophy Association (MDA), the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other governmental and philanthropic agencies.
The MDF website aims to serve as a clearing-house of information for families affected by myotonic dystrophy, physicians and other medical providers, as well as the research community. The MDF Board of Directors is currently comprised of nine individuals whose families have been impacted by the disease. The MDF also collaborates closely with its Medical and Scientific Advisory Committee, enlisted from the leaders of academic, clinical, and governmental centers.
To learn more, please read about our mission, browse our latest news and events or contact us for more information.
