MDF Support Group Facilitator Meeting Feedback Form

This form is for facilitators of MDF Support Group Meetings. Please fill out this form in its entirety. Submit a form after each Support Group Meeting you facilitate.

If you have not yet scheduled your next group meeting, please fill out this form.

Name

Support Group Name

When was your meeting?

Who attended you meeting? Please provide names and emails for each attendee!

Attendees living with DM1

Attendees living with DM2

Caregiver attendees

Guest Speaker Attendees

Other types of attendees

Did you have any first time attendees? If so, who were they?

Tell us about your meeting, especially any successes or anything you need MDF to respond to.

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Myotonic Dystrophy News

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.

October 18,2024

MDF Announces 2024 Pilot Grant Recipients Selected & Request for 2025 Pilot Grant Applications

After rigorous review, we are excited to share that in September, the MDF Board approved four outstanding projects to receive the MDF Pilot Grants. These research efforts will focus on critical areas for DM, including sleep, dyslipidemia, exercise, and therapeutic delivery. We are also excited to announce the launch of a new round of our Pilot Grants Program this November! This program offers $50,000 in one-year support for researchers focused on myotonic dystrophy (DM).

September 15,2024

Global Alliance of 60+ Myotonic Dystrophy Organisations Celebrate the Fourth Annual International Myotonic Dystrophy Awareness Day

On the 15th of September 2024, the Global Alliance for Myotonic Dystrophy Awareness unites over 60+ organisations from around the globe to mark the fourth annual International Myotonic Dystrophy Awareness Day. This day is dedicated to raising awareness about myotonic dystrophy (DM), a complex and often misunderstood genetic disease that aﬀects thousands of individuals and families worldwide.

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.