Myotonic Caregiver Virtual Support Group | Myotonic Dystrophy Foundation

The Myotonic Caregivers Support Group Program consists of a confidential Facebook discussion group, bimonthly Facebook live chat sessions and a monthly Caregiver Virtual Support Group phone meeting. The Facebook group is closed, private and not viewable by anyone outside the group. To sign up, contact MDF at 415-800-7777 or via email info@myotonic.org.

If you do not have a Facebook account and are only interested in attending the monthly Caregiver Virtual Support Group Meeting, contact MDF at 415-800-7777 or via email at info@myotonic.org.

You can also visit our Digital Academy at any time to view our caregiver-focused webinar, "On Being a Fearless Caregiver." Additionally, community-led presentations from the 2014 Myotonic Annual Conference that focus on caregiving are available. Myotonic celebrates the many critically important caregivers in the Myotonic community (view our article on caregiving here).

Myotonic Dystrophy News

November 27,2024

MDF Launches 2025 Pilot Grant Applications

We have launched a new round of our Pilot Grants Program! This program offers $50,000 in one-year support for researchers focused on myotonic dystrophy (DM). The goal is to provide DM researchers with the opportunity to explore innovative ideas and conduct preliminary investigations. This funding can help generate essential data and preliminary findings, laying the groundwork for larger-scale research projects.

November 21,2024

Meet the 2024 MDF Pilot Grant Recipients!

We are thrilled to introduce the recipients of our first round of the Pilot Grant program, each leading groundbreaking research to advance understanding and treatment of myotonic dystrophy (DM). These innovative projects represent the future of DM research, and we are excited to support their important work!

November 20,2024

New Educational Series - Understanding Myotonic Dystrophy

MDF is excited to introduce “Understanding Myotonic Dystrophy”, a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers! Our first animation “Understanding Myotonic Dystrophy – The Basics” is a broad introduction to myotonic dystrophy to help increase awareness and understanding.

October 18,2024

Research Archive: "Increased Frequency of Repeat Expansion Mutations Across Different Populations"

MDF's Chief Scientific Officer, Dr. Andy Rohrwasser, summarizes a study “Increased frequency of repeat expansion mutations across different populations” published in Nature Medicine in October 2024, an important genetic study examining the presence of repeat expansions including myotonic dystrophy (DM) in over 82,000 individuals. For our myotonic dystrophy community, the study confirms the high prevalence of DM1. The study also highlights the importance of vigilance for healthcare providers suspecting the disease as the repeat expansion might be present with low repeat numbers without any (yet) apparent symptoms.

October 18,2024

The World Glows Green in Celebration of International DM Awareness Day 2024!

In celebration of the 4th Annual International Myotonic Dystrophy Awareness Day, our incredible community members and partners from all around the world dressed for the occasion and lit their local and national monuments in green.

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.