Volunteer & career opportunities
Volunteer for MDF by showing your involvement or supporting our programs. Your effort helps build the DM community!
Drive our mission forward
The Myotonic Dystrophy Foundation (MDF) serves thousands of families around the world each year. To help ensure our families receive the resources and support they need, we are recruiting more volunteer leaders! Our phenomenal community members can engage in so many ways, like support group facilitation, starting a fundraiser, becoming a political advocate, and other ways we might not yet have thought of! If you are interested in volunteering with MDF, please email info@myotonic.org to find ways to get connected!
Advocate for myotonic dystrophy
Help raise awareness and support increased federal funding for DM research by contacting elected officials, sharing resources, or participating in advocacy campaigns.
Organize a local fundraiser to support DM programs and research while raising awareness in your community through meaningful, visible action.
Fight isolation within our community, and support those who need it most. You can brighten someone’s day by sending a heartfelt letter, drawing, or story—and remind them that they are not alone.
What our support group facilitators say
SGFs sharing their journey and impact with MDF.
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...
Become a Support Group Facilitator!
MDF Support Group Facilitators play a vital leadership role in offering support to the Myotonic Dystrophy (DM) community and connecting community members to MDF and its resources. Our Support Group Facilitators (SGFs) are volunteer community leaders who receive training and support from MDF to create spaces for those living with DM and their caregivers to confidentially share their experiences, learn from others impacted by DM, and access resources and information to help improve quality of life.
There are currently no openings for the position of SGF. If you are interested in becoming an SGF, please fill out the application below and your application will be reviewed when vacancies occur.
