Molly White, Chief Executive Officer
Please contact Molly if you would like to be added to the Myotonic media list or if you would like to speak with someone from the Myotonic community.
Myotonic is the world’s largest DM patient organization. Its mission is My Cause. My Cure: is to enhance the lives of people living with myotonic dystrophy, and advance research efforts focused on finding treatment and a cure for this disorder through education, advocacy and outreach.
Based in San Francisco, California, Myotonic partners with government, academic, and philanthropic organizations focused on neuromuscular disorders to leverage our resources and amplify our impact.
In addition to the staff, the Myotonic 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 Myotonic 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.