The Myotonic Dystrophy Foundation

Our Vision

We envision a world with treatments and a cure for myotonic dystrophy.

Our Mission

The mission of the Myotonic Dystrophy Foundation is 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.

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.

Our Background

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.

What We Do

Support & Education

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:

• Myotonic Dystrophy 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 program

Research

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.

Advocacy

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!