Our History

Myotonic My Cause. My Cure.

Our History

Headquartered in San Francisco, CA, USA, and London, England, UK, and founded in 2007, Myotonic's legal name is the Myotonic Dystrophy Foundation, doing business as (DBA) Myotonic. The Myotonic mission is straightforward and comprehensive: to improve the quality of life of people living with myotonic dystrophy (DM) and accelerate the search for therapies. Myotonic is the world’s largest DM-only patient advocacy organization, serving individuals and families in more than 75 countries around the world. Myotonic has raised and invested over $20M in helping improve the lives of affected families while driving research and drug development initiatives that have expanded the number of companies investigating DM therapies to more than 45. Read more about our MDF 3.0 initiative here; more on our impact as an organization is available here. Myotonic has been awarded the highest level of certification from Guidestar.

Our Name and Brand

Myotonic became the organization's brand in 2019 in response to confusion that existed in differentiating Myotonic from other disease organizations, and feedback from the Myotonic community that the name and current visual center felt dated and too scientific. With Myotonic we evolved the organization's brand to more successfully present the warm and welcoming face and voice that best represents Myotonic's approach to our work every day. Myotonic's sister organization in the United Kingdom, MyotonicUK, was founded in 2015 as the Wyck Foundation, and became MyotonicUK as part of this branding effort. Together, we are laser-focused on improving lives and finding therapies.


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