We created the Myotonic Dystrophy Foundation (MDF) to enhance the quality of life of people living with myotonic dystrophy (DM) and to drive research focused on treatments and a cure. DM is an inherited disorder that can appear at any age and manifests differently in every person. MDF is the leading global advocate helping patients and families navigate the DM disease process, and is often the fir
st resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. For many international patients, MDF is often the only resources and support they are able to locate. Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up the MDF community. Based in Oakland, California, MDF partners with, and complements the work of, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other governmental, academic, and philanthropic agencies. The MDF Team includes the staff, the Board of Directors, and Scientific Advisory Committee, and Support Group Facilitators. Our staff leads the day-to-day operations of our organization, and works with the board to set and execute our strategic agenda. The Board of Directors is comprised of leaders in science, finance, fundraising, advocacy and non-profit leadership. Their expertise helps our work, assess our impact, and guide our pursuit of patient-relevant outcomes. The Scientific Advisory Committee is a group of leading myotonic dystrophy specialists and researchers from around the globe. Our advisors provide guidance, grant peer reviews, and speak at our annual conference. Many of MDF's support programs are led by our trained volunteer community members just like you!
