Care, connection & research for myotonic dystrophy
The Myotonic Dystrophy Foundation is uniting the DM community to improve care and accelerate progress towards a cure.
Find support, advance research, or make an impact
Myotonic dystrophy (DM) is a rare, inherited genetic condition that affects the muscles and other body systems. People living with DM may experience muscle weakness, fatigue, and other health challenges that can progress over time.
Hear from those who live with DM by watching the video.
Leading progress in myotonic dystrophy
We're helping those affected by myotonic dystrophy through research and connection.
Family stories
Voices from the community that navigate life with DM.
Juniper Riddle, diagnosed with DM2, turned challenges into creativity—adapting farm life, embracing hydroponic gardening, and advocating for accessibility while staying connected to her community.
Mindy Kim, long active in the DM community since her 2010 diagnosis, brings her passion for connection and outreach to a new role with MDF. She will help families stay engaged and update the Myotonic Dystrophy Family Registry.
Alex and Julie LeBoeuf share their powerful journey with DM1 and now lead a Canadian support group, using their compassion and advocacy to support and uplift others in the myotonic dystrophy community.
Araceli Mera and David Kugler, longtime DM community advocates, have launched a new virtual Spanish-language support group to expand access, reduce barriers, and connect Spanish-speaking families affected by myotonic dystrophy.
Glenda Winson, Guillermo Zubillaga, and Jan Jaffe lead MDF’s New York City support group, creating connection and community for people living with myotonic dystrophy. Their shared experiences, compassion, and leadership help ensur...
With a fifteen-minute egg timer ticking, Ruth Sheldon listens as Jodie Howell and Samantha Welsh share why they give their time to the myotonic dystrophy community, blending science, faith, cats, snow, and grace into spaces of con...
