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

March 18, 2021

Opportunities to Participate in MDF Strategic Planning

If you are living with DM1 or DM2, or are the caregiver of an adult or child with the disease, we invite you to join us for a group conversation to help shape the future of MDF. The conversations will run for 60 - 90 minutes and space is limited.

March 18, 2021

Thank You Clare May!

MDF wishes Clare May and her family all the best after 14 years as a phenomenal support group facilitator! She not only provided her home as the meeting site, but dedicated herself to growing the group further through the local clinic and by word of mouth.

March 18, 2021

Research Fellow Feature: Benjamin M. Kidd

MDF is proud to announce Benjamin M. Kidd as one of MDF UK’s 2021 Research Fellowship Recipients! Kidd's project, “Brain Choroid Plexus Dysregulation and Cerebral Atrophy in DM1,” will use several mouse genetic models of DM1 with the intention to identify novel and accessible cell targets and pathways for effective myotonic dystrophy therapies.

February 26, 2021

International Myotonic Dystrophy Awareness Day - Press Release

In honour of Rare Disease Day 2021, a global alliance of myotonic dystrophy-focused organisations have united to announce the declaration of International Myotonic Dystrophy Awareness Day to be observed each September 15th.

February 17, 2021

In Memory of Sir Peter Harper

It is with great sadness that MDF shares that Sir Peter Harper, groundbreaking DM researcher and author of the book Myotonic Dystrophy: The Facts, passed away last month. We honor and recognize his work to advance our understanding of myotonic dystrophy.

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Community Voices and Inspiration