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

July 18,2024

Welcome Renee Smith, Fundraising and Operations Coordinator

Renee joined MDF in April 2024 and brings a wealth of knowledge in creating effective business processes. She obtained a Bachelor of Arts degree in Interdisciplinary Studies from the California Institute of Integral Studies. Her education in Social Science Studies and Fine Arts has provided her with distinctive problem solving and adaptation skills. She brings an earnest passion for streamlining procedures and improving quality of service to this role.

July 18,2024

High Priority, Short-Term Project Award Recipient: Kristina Kelly, DPT

Dr. Kristina Kelly is a faculty member at the University of Missouri (MU), but her involvement in DM1 research and clinical care spans several years! She is determined to address critical questions about the occurrence and contributors to fatigue in DM1, its evolution over time, and effective management strategies. Dr. Kelly is eager to contribute to the understanding and treatment of fatigue in Myotonic Dystrophy, believing it will profoundly impact quality of life.

June 21,2024

Celebrate Myotonic Dystrophy In Motion Awareness Month - July 2024!

We’re excited to bring the myotonic dystrophy (DM) community together for a month of activities and resource features focused on movement! Join us throughout July for live webinars, virtual classes, and opportunities to make new friends.

June 20,2024

Community Interview: Shaun Moore, Support Group Facilitator

MDF is excited to introduce Shaun Moore as a new MDF Support Group Facilitator! MDF’s Senior Manager of Community Engagement, Lucie Shiffman, sat down with one of our new Support Group Facilitators (SGFs) for the Affected Men’s Group to learn more about his story, his experiences with myotonic dystrophy, and his inspiration to get involved with MDF.

June 20,2024

Research Fellow Feature: Alexandra L. Marrero Quinones

Ms. Alexandra L. Marrero Quinones, a dual-degree student pursuing Human and Molecular Genetics & Genetic Counseling at Virginia Commonwealth University (VCU), is currently a doctoral candidate in the Myotonic Dystrophy Translational Research Program (MDTRP) where she is mentored by Dr. Nicholas Johnson. Alexandra's long-term goal is to identify genetic modifiers of disease severity in DM1.

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.