Myotonic Dystrophy Foundation

The Myotonic Dystrophy Foundation is a patient organization focused solely on myotonic dystrophy (DM). Based in the Preservation Park of Oakland, California, MDF was founded by families living with myotonic dystrophy. It is an American 501(c)(3) non-profit organization.

WWW myotonic.org

History

MDF evolved during the International Myotonic Dystrophy Consortium in October 2005 to create a national advocacy organization for people living with myotonic dystrophy. In September 2019, the organization rebranded to Myotonic with the hope of garnering more attention for the rare disease. However, in 2021, the organization reverted its name back to the Myotonic Dystrophy Foundation citing a strong community preference for the original moniker.