Myotonic Dystrophy Foundation
reliable, independent, third-party sources. (March 2021) ) |
| Founder | Shannon Lord Non-profit |
|---|---|
| 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
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.
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| National/International Organizations | |
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| Clinical trials | |
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