The Myotonic Dystrophy Foundation mission
Strengthening the DM community through support, care, advocacy, and research that leads us closer to treatments and a cure.
About the foundation
The Myotonic Dystrophy Foundation (MDF) is the leading global advocate for people living with myotonic dystrophy (DM). It is often the first resource contacted by newly-diagnosed patients, families, social workers, and physicians around the world. For many international patients, the foundation is their only resource. MDF has provided support for people living with DM in more than 139 countries around the world. Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up the Myotonic Dystrophy Foundation community.
Our Mission
Community, Care, and a Cure.
- We support and connect the myotonic dystrophy community.
- We provide resources and advocate for care.
- We accelerate research toward treatments and a cure.
Our Vision
We envision a world with treatments and a cure for myotonic dystrophy.
Support & education
Today, we’re the world’s largest patient organization focused solely on myotonic dystrophy. We provide education and resources for those living with DM, and help community members find local support groups. We conduct outreach to raise awareness about DM in the medical community with a medical school roadshow.
Find a doctor, therapist, or other other medical professional who understands and has experience with Myotonic Dystrophy (DM).​
One-on-one support for individuals needing information about resources and advice on living with DM.
Resources (Toolkit & publications)
Downloadable and online resources for newly-diagnosed families, those living with DM, and healthcare professionals.
Over 200 hours of videos and webinars on an array of topics
Myotonic Dystrophy Family Registry
Individuals can take surveys, upload medical records, track health outcomes, and learn about the latest research and clinical trials.
Clinical Research Network (DMCRN)
Supporting a robust clinical research network to increase the efficiency of testing new drug candidates.
Supporting up-and-coming postdoctoral fellowships and grants to expand the research base.
Studying the true prevalence of the DM mutation in the population and documenting the socio-economic burden of the disease.
Research
The Myotonic Dystrophy Foundation drives research that accelerates progress toward effective treatments and a cure. We support scientists through fellowships, fund critical studies, and invest in tools that strengthen the global research community. By building registries, advancing clinical trial readiness, and fostering collaboration, we help move discoveries from the lab to the world.
