Our Mission

Who We Are

The Myotonic Dystrophy Foundation (MDF) is the world's largest patient organization focused solely on myotonic dystrophy. Our mission, "Care and a Cure," is to enhance the quality of life of people living with myotonic dystrophy (DM) and advance research focused on treatments and a cure.

What We Do

Support & Education

MDF provides emotional support, education and resoucres to affected individuals and their families, and conducts outreach to raise awareness about DM in the medical community and the general population. This includes:

  • MDF Toolkit - a comprehensive packet of information and resources for newly-diagnosed families and their doctors
  • MDF Warmline - staffed phone support for individuals needing a caring listener or information about resources and advice on living with DM
  • www.myotonic.org - comprehensive website with information, resources and a digital academy with over 200 hours of videos and webinars on an array of topics
  • MDF Annual Conference - focuses on the latest information on daily living strategies and products, updates on research and advocacy, and more
  • Webinars and other assistance and education programs
  • TeamMDF - a grassroots volunteer corps of people living with DM, their families and friends, launched to create support groups, physicial referral lists and other resources and programs. TeamMDF also helps develop an organized community face and voice for DM issues regionally, nationally and internationally

Research

MDF is committed to helping advance research. Efforts include:

  • Awarding annual post-doctoral fellowships and other grants to accelerate DM research
  • Launching and managing the Myotonic Dystrophy Family Registry, an online, patient-entered database that collects information on disease symptoms, demographic information and quality of life. The Registry also supports clinical trials and research studies, and helps drive advocacy efforts focused on improving the circumstances of people living with DM

Advocacy

MDF advocates for legislation, research and infrastructure to improve the quality of life of people living with DM and accelerate research. We also partner with other organizations focused on neuromuscular disorders to leverage our resources and amplify our impact.

Learn more about our advocacy efforts.