Start a Support Group in Your Area | Myotonic Dystrophy Foundation

Published on Thu, 08/15/2019

Over 24 Active Support Groups

MDF currently sponsors 24 active support groups around the US and internationally, in addition to our online and phone based groups. We are incredibly grateful for the commitment of our support group facilitators and the vital role that they play for the DM community. Support groups provide a space for people to connect, share stories and challenges, and support one and other. These groups create lasting relationships and can help people feel less isolated and alone.

Click here to find an in-person support group near you!

Start a MDF Support Group in Your Area

We are on a mission to make support groups available to every affected family member who wants one. If you are interested in starting a support group in your area, we are here to work with you through every step of the process, and we'll provide ongoing support and resources to ensure that your group is a success. Contact us at 415-800-7777 or at info@myotonic.org for more information.

Virtual Support Options

Don't live near a support group but still interested in networking, sharing information and making friends in the DM community? Not quite ready to start your own? Check out MDF's Facebook Groups:

Other MDF Facebook Groups:

Myotonic Dystrophy News

July 23,2025

Could Myotonic Dystrophy Be Included in Newborn Screening? Experts Say It’s Time to Explore

On February 14, 2025, the RNA Institute and the Myotonic Dystrophy Foundation (MDF) organized and co-hosted the first ever symposium exploring how to include myotonic dystrophy (DM) in newborn screening. Conditions included in newborn screening are also diseases that do not have treatments but benefit from early disease management thereby significantly improving clinical outcomes.

July 23,2025

Fixing DNA Typos: New Hope for Myotonic Dystrophy

A recent publication in Nature Genetics explores base editing as a solution to repeat expansion diseases similar to myotonic dystrophy (DM). This summary was created by Asmer Aliyeva, PhD Candidate in Dr. Andy Berglund’s lab at the RNA Institute, in collaboration with MDF's Chief Scientific Officer, Dr. Andy Rohrwasser.

June 27,2025

125,000+ Miles for Awareness: One Man’s Ride to Shine a Light on Myotonic Dystrophy

This summer, a cross-country journey is capturing hearts and uniting motorcycle enthusiasts, rare disease advocates, and families impacted by DM. Patrick "Pat" Cornell—a 60-year-old Navy veteran, 9/11 first responder, and retired firefighter—is riding 125,000+ miles in 125+ days to raise awareness and funds for MDF!

June 27,2025

Thank You Advocates, 6 U.S. Senators Sign DM Research Letter!

For the second year in a row, thanks to the work of MDF advocates across the country, 6 U.S. Senators signed Senator Amy Klobuchar’s (D-MN) letter to the Senate Appropriations committee in support of our request for $10 million in new DM research funding as part of the Congressionally Directed Medical Research Program.

June 27,2025

Meet MDF's Summer 2025 Interns!

MDF is excited to highlight the work of two MDF interns, who are contributing to MDF's mission of Community, Care, and a Cure this summer! We appreciate all of their enthusiasm to improve our support of the DM community!

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.