Based in the Preservation Park of Oakland, California, MDF was founded by families living with myotonic dystrophy.
MDF evolved during the International Myotonic Dystrophy Consortium (IDMC-5) 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.
[4] However, in 2021, the organization reverted its name back to the Myotonic Dystrophy Foundation citing a strong community preference for the original moniker.
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