Programs and Events

The Virtual Support Group Meeting for Adults Over 50 Living with DM1 had its inaugural launch on Sunday, November 14th.

On March 3, 2020, Loraine Dressler presented to about 40 first and second year medical students at UC Irvine School of Medicine on behalf of the myotonic dystrophy (DM) community.

Northern Califronia Support Group Facilitator shares her RDD2020 experience. Dr. Leslie Krongold speaks on her efforts to raise awareness and advocate on behalf of the myotonic dystrophy community during Rare Disease Month.

Over 150 friends and family joined the Dillon Family to raise nearly $33,000! It was a beautiful day in Columbus, OH to celebrate Rare Disease Day 2020 at the golf range. Friends family, and supporters enjoyed a brunch, raffle, and compelling stories from MDF Community Members!

Over 70 community members attended a Community Call covering upcoming events like Rare Disease Day, tips for planning your own event and an advocacy update.

Dr. William D. Arnold, Neurologist at the Ohio State Wexner Medical Center, kicked off an educational presentation about myotonic dystrophy to 25 second and third year medical students.

MDF's Camp JOA (juvenile-onset adults) was the first-ever nationwide camp for adults with DM.

MDF DM Days brings together clinicians, researchers and myotonic dystrophy (DM) family members for educational and networking opportunities.

MDF currently sponsors 24 active support groups around the US and internationally, in addition to our online and phone based groups.

Many of our community members have joined closed MDF Facebook groups to network, share information and make friends in the DM community. MDF offers private Facebook groups for people with DM1, DM2, JOA, Caregivers, and many more!