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

October 20, 2020

MDF 2020 Virtual Gala

We are delighted to invite you to the Myotonic Dystrophy Foundation (MDF) 2020 Virtual Gala. This one hour live streamed event will celebrate and support the MDF's critically important work on behalf of individuals and families living with myotonic dystrophy.

October 16, 2020

Reflections on Successful MDF Virtual Family Conference

I hope that you and your families are safe and well. Even though COVID-19 has presented many challenges, I would like to share with you a wonderful Myotonic Dystrophy Foundation success story that only came about because of the pandemic. Rather than taking a year off, the MDF hosted its first virtual annual family conference, which took place three weeks ago.

October 16, 2020

Summer Volunteer Finishes US Financial Resources Suite

The MDF Team would like to extend a huge thanks to our Summer Volunteer, Mollie Allred, for completing our series of US Financial Resources!

October 16, 2020

MDF Advocates are the Key to A Cure

Since our founding in 2007, Myotonic Dystrophy Foundation advocates have been educating Congress on the need for increased myotonic dystrophy research funding, working with the Social Security Administration to eliminate red tape for individuals with congenital myotonic dystrophy, and leading initiatives with the U.S. Food and Drug Administration to accelerate drug development and better understand the desires of individuals living with myotonic dystrophy.

August 14, 2020

Myotonic Dystrophy Foundation Brand Refresh

Over the last six months, our new CEO had the privilege of speaking with hundreds of stakeholders throughout the DM ecosystem. Through these discussions, a clear pattern emerged that the adoption of the shortened name “Myotonic” was not having the positive impact intended.

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Community Voices and Inspiration