Myotonic Dystrophy Foundation

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[edit] Myotonic Dystrophy Foundation

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 the San Francisco Bay Area of California, the MDF has formed strategic alliances with several independent organizations to raise funds for DM research, including the Run America Foundation of Portland, Oregon; The Hunter Research Fund of Atlanta, Georgia; and the Stone Family Circle of Friends of Richmond, Virginia. 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 web site aims to serve as a clearing-house of information for DM-affected families, physicians and other medical providers, as well as the research community. The MDF Board of Directors is currently eight 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.