Myotonic Dystrophy Foundation: Our History

My Cause. My Cure.

The Myotonic Dystrophy Foundation was founded in California in 2007. 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 and a cure.

We are headquartered in Oakland, CA in the San Francisco Bay Area. We have grown into the world’s largest DM-focused patient advocacy organization, serving thousands of individuals and families in more than 78 countries around the world.

The Myotonic Dystrophy Foundation has raised and invested more than $20 million 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!

Our Name and Brand

In September 2019, we launched an initiative with the goal of better differentiating the Myotonic Dystrophy Foundation (MDF) in the ever more crowded world of rare disease organizations by shortening the organization’s name to Myotonic. Our objective was to evolve the organization's brand to more successfully present the warm and welcoming face and voice that best represents the Foundation’s approach to our work every day, as well as help distinguish myotonic dystrophy from other rare diseases.

Now, 10 months since the launch of this initiative, we have undertaken broad community surveys and many stakeholder interviews from all areas of the Foundation’s ecosystem to gather feedback on this change. It has become evident that the adoption of the name Myotonic was not having the impact originally intended and that across all of our stakeholders, 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 we are very proudly returning to our original name: the Myotonic Dystrophy Foundation.

Our Sister Organization

In 2015, the Myotonic Dystrophy Foundation’s sister organization in the United Kingdom was founded as the Wyck Foundation, carefully prioritizing DM research investment. In 2019, in an effort to more clearly identify the focus of the Wyck Foundation’s work, the name was changed to Myotonic Dystrophy Foundation UK. Working hand-in-hand, co-funding initiatives to leverage resources and ensure we make the greatest collaborative impact, the US and UK offices are laser-focused on improving quality of life and finding DM therapies.

More on our impact as an organization is available here.

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