Programs and Events

Virtual Support Group for Adults Over 50 Living with DM1 Plan Future Meetings!

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

UC Irvine Medical School Roadshow

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.

Rare Disease Day Report from Leslie Krongold

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.

Massive Success for First Topgolf Tournament for Myotonic Dystrophy

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!

Report Out: Community Call January 2020

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.

MDF Medical School Roadshow Raises DM Awareness at Ohio State University

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 First Away Camp for JOAs a Big Success!

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

DM Days 2019

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

Start a Support Group in Your Area

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

MDF Community Forum Update

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!

© Myotonic Dystrophy Foundation. All rights reserved.