Myotonic Dystrophy Foundation

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

Myotonic
FounderShannon Lord[1]
TypeNon-profit
EIN: 20-5014628
HeadquartersOakland, California[2]
Chief Executive Officer
Dr. Tanya Stevenson, EdD, MPH[3]
Websitewww.myotonic.org

History

Myotonic 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 of 2019, the organization rebranded to Myotonic from the Myotonic Dystrophy Foundation (MDF).[4]

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References
  1. "In Memory of Shannon Lord, Myotonic Founding Chairman". Myotonic. Retrieved 18 May 2020.
  2. "Myotonic is Moving to a New Location!". Myotonic. Retrieved 18 May 2020.
  3. "Staff". Myotonic. Retrieved 18 May 2020.
  4. "Hello Myotonic!".
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