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About the Myotonic Dystrophy Foundation

The Myotonic Dystrophy Foundation (MDF) is a non-profit organization founded in 2007 by families living with myotonic dystrophy (DM). Our mission, Care and a Cure, is to enhance the quality of life of people living with mytonic dystrophy, and to advance research efforts focused on finding treatments and a cure for this disease.

Based in San Francisco, California, MDF partners with government, academic, and philanthrophic organizations focused on neuromuscular disorders to leverage our resources and amplify our impact.

In addition to the staff, the MDF team includes the Board of Directors, which is made up of volunteer leaders from private and government sectors, many of whom have families impacted by the disease, and the Scientific Advisory Committee, a group of leading myotonic dystrophy specialists and researchers from academic, clinical, and government organizations. To learn more about the MDF team click here.

About Myotonic Dystrophy

Described as the most variable of all diseases found in medicine, myotonic dystrophy is an inherited disorder that can appear at any age and manifests differently in each individual. The most common form of adult-onset muscular dystrophy, DM affects somewhere between 1:3000 and 1:8000 people worldwide, and can cause muscle weakness, atrophy and myotonia, as well as problems in the heart, brain, GI tract, endocrine, skeletal and respiratory systems. There is currently no treatment or cure for DM.


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