The mission of the Myotonic Dystrophy Foundation is Community, Care, and a Cure.
The Myotonic Dystrophy Foundation (MDF) is the leading global advocate helping patients and families navigate the myotonic dystrophy (DM) disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. For many international patients, the Myotonic Dystrophy Foundation is often the only resource they are able to locate, and MDF has provided assistance and support for people living with DM in more than 80 countries around the world.
Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up the Myotonic Dystrophy Foundation community.
We created the Myotonic Dystrophy Foundation to enhance the quality of life of people living with myotonic dystrophy 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. There is currently no treatment or cure.
Today, we're the world's largest patient advocacy 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. Other outreach activities include:
The Myotonic Dystrophy Foundation is committed to advancing research and therapies. Read about MDF Research Fellows. Read about MDF Research Grant Recipients. Some highlights of what we’re doing:
Supporting up-and-coming postdoctoral fellowships to expand the research base
Launching and managing the Myotonic Dystrophy Family Registry
Investing in target identification and drug screening
Supporting a robust clinical research network to increase the efficiency of testing new drug candidates
Determining the true prevalence of the DM mutation in the population and documenting the socio-economic burden of the disease
Through our efforts, the DM research community has received over $10 million in critical funding
De-risking myotonic dystrophy drug development for over 45 pharmaceutical companies and institutions.
MDF advocates for legislation, research, and infrastructure initiatives that will advance our understanding of myotonic dystrophy, accelerate drug development, and improve diagnosis and care. We strive to raise visibility of myotonic dystrophy and people living with DM with key stakeholders in Congress, federal and state agencies, medical professionals, and the media.
In 2021, a global
alliance of myotonic dystrophy-focused organisations have, for the first time, united
to announce the declaration of International Myotonic Dystrophy Awareness Day
to be observed each September 15th! Click here learn more about this international effort to raise myotonic dystrophy awareness!
The mission of the Myotonic Dystrophy Foundation is Community, Care, and a Cure. Click here to learn more about MDF and our work.