Who We Are
Myotonic is the world's largest patient organization focused solely on myotonic dystrophy. Our mission 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
Myotonic provides emotional support, education and resources to affected individuals and their families, and conducts outreach to raise awareness about DM in the medical community and the general population. This includes:
- 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
- Myotoni 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
Myotonic is committed to advancing research and therapies. Efforts include:
- 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
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.