Community Voices and Inspiration

"Hands" featuring Eric Hutchinson

Award-winning recording artist & Myotonic community member Eric Hutchinson released the song "Hands" on his new album "Modern Happiness" in partnership with Myotonic! Eric developed the song & video to share his family story & help raise awareness about DM & critically-needed funds for the Myotonic. Directed by Doug Thomsen and Adam Behrmann.

Living with DM: The Community Speaks

Myotonic community members speak about the impact that living with DM has on their lives.

Hope & Inspiration: Myotonic Community Voices

Family members, caregivers and researchers describe their experiences living with myotonic dystrophy and research advances creating hope for the future.

Consensus-based Care Recommendations: What Do They Mean for You? (2018 MDF Annual Conference)

Myotonic is asking our community members to help educate their doctors about the care recommendations, and we'll show you how. Watch DM doctors and community members act out entertaining skits that will explain what to say to your doctors during your doctors visits. These skits will include a twist: affected community members will be the doctors and doctors are patients in these hilarious educational vignettes.

Living with DM: Patients Report on Changes Over Time (2018 MDF Annual Conference)

This interactive panel session was presented in a similar format to the Patient-Focused Drug Development meeting presented by MDF as a part of the 2016 MDF Annual Conference, and the CNS Endpoint Development discussion presented at the 2017 MDF Annual Conference.

Dr. Moxley Retirement 2018

MDF created a short video to recognize and celebrate Moxley’s incredible commitment and impact on the treatment of myotonic dystrophy and scientific discovery to drive disease understanding and therapy development. “Mox” is in many ways irreplaceable, functioning as a singular force in the myotonic dystrophy field for over four decades.

Jeremy and Erica Kelly Tribute Video

A special tribute to Jeremy and Erica Kelly of Myotonic.

DM Heroes

Watch "DM Heroes", a moving short film about a few heroes in the myotonic dystrophy community.

Myotonic Dystrophy News

June 29, 2022

MDF Announces House Appropriations Committee Support For New NIH Repeat Expansion Disease Initiative (REDI)

U.S. House Appropriations Committee included a MDF led provision in the fiscal year 2023 Labor, Health and Human Services funding legislation that will help establish a new Repeat Expansion Disease Initiative (REDI) at the National Institutes of Health (NIH) to increase federal funding for research on repeat expansions like myotonic dystrophy.

June 24, 2022

Mounica Lakshmi Dugginapeddi, MPH, Community Programs Coordinator

MDF is excited to welcome Mounica Lakshmi Dugginapeddi, MPH, as our Community Programs Coordinator!

June 24, 2022

Research Fellow Feature: Christina Heil, PhD

MDF is proud to announce Christina Heil, PhD of the University of Rochester Medical Center, Rochester, New York, US as one of MDF UK’s 2022 Fellowship Recipients!

June 24, 2022

Research Fellow Feature: Preeti Kumari, PhD

MDF is proud to announce Preeti Kumari, PhD of the Massachusetts General Hospital, Boston, Massachusetts, US as one of MDF UK’s 2022 Fellowship Recipients!

June 24, 2022

Community Interview: Cindy Hubert

Hello Fellow MDF Community Members! Here we are with our very first story! I hope you all enjoy reading about our new Washington State co-facilitator Cindy Hubert. She recalls the first time she recognized her myotonic dystrophy (DM) symptoms – in 1983, when she was pregnant with her first child, Daniel.

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Community Voices and Inspiration