Myotonic: Our History

Myotonic: My Cause. My Cure.

We were founded in 2007 as the Myotonic Dystrophy Foundation, and today we simply called Myotonic. Our mission is straightforward and comprehensive: To improve the quality of life of people living with myotonic dystrophy (DM) and accelerate the search for therapies. 

We're headquartered in San Francisco and London and have grown into the world’s largest DM-focused patient advocacy organization, serving individuals and families in more than 75 countries around the world. 

Myotonic has raised and invested more than $20M to help improve the lives of people living with DM. We're also driving research and drug development initiatives that have expanded the number of companies investigating DM therapies to more than 45. We’re proud that as a nonprofit, Myotonic has been awarded the highest level of certification from Guidestar.

Our Name and Brand

Myotonic became the organization's brand name in 2019 in response to confusion in differentiating the Myotonic Dystrophy Foundation (MDF) from other disease organizations. We had also received feedback from the Myotonic community that the original MDF name and branding 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.

Read more about our MDF 3.0 initiative here; more on our impact as an organization is available here.

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