The Myotonic Mission

Our Mission

Our mission, "Care and a Cure," is to enhance the quality of life of people living with myotonic dystrophy (DM) and accelerate research focused on finding treatments and a cure.

Myotonic is the leading global advocate helping patients and families navigate the 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, Myotonic is often the only resource they are able to locate, and Myotonic has provided assistance and support to families in more than 70 countries as far-flung as Croatia, Jordan, Chile, New Zealand and Israel. Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up the Myotonic community.

Our Background

We created Myotonic 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 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 Toolkit - a comprehensive packet of information and resources for newly-diagnosed families and their doctors
  • Myotonic 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
  • Myotonic 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

Myotonic is committed to advancing research and therapies. Read about the research we support. 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

Advocacy

Myotonic 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. Here's how you can help.

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