DM2 Caregiver Support Group

Join us for our DM2 Caregivers Virtual Support Group Meeting!

3rd Tuesday of Every Month

3:30 PM - 5:00 PM PDT
6:30 PM - 8:00 PM EDT

Once you’ve registered, use the link in your confirmation email to join any of the upcoming meetings. If you do not receive a confirmation email, please reach out to info@myotonic.org.

You are invited to a Zoom meeting for the Myotonic Dystrophy Type 2 Caregiver Community! Join MDF Support Group Facilitator Kim McPeek for a new support group addressing the needs of the Myotonic Dystrophy Type 2 caregiver community. This group was formed to provide space for people caring for someone living with Myotonic Dystrophy Type 2 to share their experiences, stories and support each other. Share this event with your friends on Facebook!

Please note this group is ONLY for DM2 Caregivers. Additionally no virtual support or discussion groups are recorded in order to respect the privacy and confidentiality of attendees.

Looking for other virtual support opportunities? Join the conversation with fellow community members in our Facebook Group for Caregivers or check out our calendar of upcoming events.

Questions?

For additional information or to contact facilitators, please contact MDF by email at info@myotonic.org or by phone at 415-800-7777.

Date(s)

Tue, 12/17/2024 - 04:00AM

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.

Join us for our DM2 Caregivers Virtual Support Group Meeting!

3rd Tuesday of Every Month

3:30 PM - 5:00 PM PDT6:30 PM - 8:00 PM EDT

Questions?

3:30 PM - 5:00 PM PDT
6:30 PM - 8:00 PM EDT