History of the foundation
Strengthening the DM community through support, care, advocacy, and research that leads us closer to treatments and a cure.
Community, Care and a Cure
The Myotonic Dystrophy Foundation (MDF) was founded in California in 2007 as a 501(c)(3) nonprofit organization. From the start, our mission of “care and a cure” has focused on connecting people living with myotonic dystrophy (DM), their families, and caregivers with trusted information, support, and each other. Our original logo of two hands shaking reflected the community, trust, and respect that continue to guide our work.
Today, MDF is the world’s largest myotonic dystrophy-focused patient advocacy organization, serving thousands of individuals and families in more than 139 countries. With our community and supporters, we have raised and invested more than $39 million to improve care, advance research, and support the development of new treatments for DM.
Evolution of our name and brand
In September 2019, we launched an initiative with the goal of better differentiating the Myotonic Dystrophy Foundation (MDF) by shortening the organization’s name to Myotonic. Our objective was to evolve the organization’s brand to highlight our warm, welcoming approach, as well as help distinguish myotonic dystrophy from other rare diseases.
After community surveys and many stakeholder interviews from all areas of the Foundation’s ecosystem, it became evident that the adoption of the name Myotonic was not having the impact originally intended. There is an organization name preference for the original “Myotonic Dystrophy Foundation” over “Myotonic”. This process has underscored the strength and importance of the full name of the organization so in 2020 we updated our logo and proudly returned to our original name: the Myotonic Dystrophy Foundation.
About MDF UK (formerly the Wyck Foundation)
In December 2024, after nine impactful years, the Trustees of Myotonic Dystrophy Foundation UK (MDF UK) made the difficult decision to cease operations, believing it was in the best interests of the charity and its mission.
The MDF UK originally established in 2015 as the Wyck Foundation, was founded in London by a dedicated group of individuals committed to supporting global efforts to improve the quality of life for those living with myotonic dystrophy (DM). From its inception, MDF UK focused on accelerating the discovery of treatments and driving advancements in DM care and research.
