Myotonic Dystrophy Foundation

Myotonic Dystrophy Foundation (MDF)
Founder	Shannon Lord^[1]
Type	Non-profit
Tax ID no.	EIN: 20-5014628
Headquarters	Oakland, California^[2]
Chief Executive Officer	Dr. Tanya Stevenson, EdD, MPH^[3]
Website	www.myotonic.org

The Myotonic Dystrophy Foundation (MDF) 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.

History

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.^[5]

References

^ "In Memory of Shannon Lord, MDF Founding Chairman". www.myotonic.org. Retrieved 18 May 2020.
^ "Myotonic is Moving to a New Location!". www.myotonic.org. Retrieved 18 May 2020.
^ "Staff". www.myotonic.org. Retrieved 18 May 2020.
^ "Hello Myotonic!". www.myotonic.org.
^ "Myotonic Dystrophy Foundation Brand Refresh". www.myotonic.org. Retrieved 16 March 2021.