Myotonic Dystrophy Foundation

Non-profit OrganizationsCalifornia, United States11-50 Employees

The Myotonic Dystrophy Foundation is a nonprofit organization focused on myotonic dystrophy (DM). Its mission centers on building community, delivering care, and pursuing a cure by advancing research and improving quality of life for those affected. It functions as a leading global resource, helping patients, families, social workers, and physicians understand the DM disease process, with international reach where it is often one of the few accessible sources of information and support. Based in Oakland, California, the foundation has operated since 2007.

Operating in the nonprofit sector, MDF positions itself as a key advocate in the DM field, collaborating with government agencies such as the NIH and CDC, as well as academic and philanthropic partners, to complement ongoing work. Its community comprises tens of thousands of people living with DM and their networks. The organization has engaged with agencies like the Social Security Administration and the FDA to inform policy, ease administrative barriers for individuals with DM, and accelerate drug development. In December 2023, MDF appointed Andrea Perez as Fundraising and Operations Coordinator as a notable recent development.

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