Myotonic: Get Involved

Raise Your Voice for Myotonic Dystrophy Care and a Cure

We are Myotonic, 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 myotonic dystrophy, and to advance research efforts focused on finding treatments and a cure for this disease. To learn more about the Myotonic mission click here.

Your voice can help influence research funding budgets, the development of new therapies, clinical trial efforts and initiatives to improve the quality and cost of care for those living with myotonic dystrophy (DM).

Learn and share about how Myotonic advocates for key initiatives that will drive improved care and accelerated research while raising visibility of myotonic dystrophy and people living with DM with stakeholders in Congress, federal and state agencies, medical professionals and the media.

Our fundraising page has links and instructions for those who wish to participate in our personal grassroots campaigns. You can help raise money for improved care and therapies just by making a social media post.

About Myotonic Dystrophy

Myotonic dystrophy (DM) 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 no treatment or cure yet for DM.

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