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

August 4, 2021

Myotonic Dystrophy Foundation Applauds U.S. Senator Tim Kaine for Leading Resolution Designating September 15th International Myotonic Dystrophy Awareness Day

August 4, 2021. Worldwide: The Myotonic Dystrophy Foundation (MDF) applauds U.S. Senator Tim Kaine (D-VA) for introducing the first ever U.S. Senate resolution designating September 15th as International Myotonic Dystrophy Awareness Day.

May 14, 2021

Dr. Richard Moxley, Emeritus Member of the MDF Scientific Advisory Committee

MDF is proud to recognize Richard T. Moxley, III, MD for his distinguished service in the field of myotonic dystrophy and his role on the MDF Scientific Advisory Committee. This month Dr. Moxley is retiring from MDF’s Scientific Advisory Committee (SAC), after supporting MDF since our inception, and will now serve as an Emeritus member.

May 14, 2021

Research Fellow Feature: Maya Gosztyla

MDF is proud to announce Maya Gosztyla as one of the MDF’s 2021 Fellowship Recipients! Maya Gosztyla’s project “Investigating RNA-binding Proteins and RNA Localization in cDM1 Organoids” plans to search for new RBPs, beyond those currently known, that are dysregulated in DM1. They will conduct this analysis using cerebral organoids, which mimic the cells and structure of the human brain using spherical clumps of cells grown in a dish.

May 14, 2021

Meet Kate Beck, Special Projects Manager

MDF is excited to formally welcome Kate Beck as our Special Projects Manager! Kate first engaged with the foundation in 2019 after her close friends were diagnosed with DM. After learning more about our mission, she was inspired to help advance care and a cure.

May 14, 2021

Building on Our Rare Disease Day Success - Advocating for Increased Myotonic Dystrophy Research

MDF advocates from across the country did their part as part of another highly successful annual Rare Disease Day celebration. There has been a lot of activity in Washington, D.C. to report on since Rare Disease Day. There are also opportunities to continue our research advocacy.

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Community Voices and Inspiration