Myotonic Dystrophy Foundation
Encyclopedia
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. The MDF 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, 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.
Myotonic dystrophy
Myotonic dystrophy is a chronic, slowly progressing, highly variable inherited multisystemic disease. It is characterized by wasting of the muscles , cataracts, heart conduction defects, endocrine changes, and myotonia. Myotonic dystrophy can occur in patients of any age...
(DM). Through education, advocacy and research, MDF is committed to establishing a voice and a face for this disorder. The MDF 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, 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
Muscular Dystrophy Association
The Muscular Dystrophy Association is an American organization which combats muscular dystrophy and diseases of the nervous system and muscular system in general by funding research, providing medical and community services, and educating health professionals and the general public...
(MDA), the National Institutes of Health
National Institutes of Health
The National Institutes of Health are an agency of the United States Department of Health and Human Services and are the primary agency of the United States government responsible for biomedical and health-related research. Its science and engineering counterpart is the National Science Foundation...
(NIH), the Centers for Disease Control and Prevention
Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention are a United States federal agency under the Department of Health and Human Services headquartered in Druid Hills, unincorporated DeKalb County, Georgia, in Greater Atlanta...
(CDC), and other governmental and philanthropic agencies.