Community Voices and Inspiration
Directed by Doug Thomsen and Adam Behrmann.
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 myotonic dystrophy.
"hands" is the most personal song from my new album, Modern Happiness, which I wrote as a tribute to my dad who is living with myotonic muscular dystrophy, or DM. DM is a disease that has affected my dad and my family for over 35 years, but was never something we really talked about. “hands” is a song about being seen and heard as a disabled person.
I teamed up with Myotonic to create this video as part of a campaign to raise awareness of the disease and how we can get together to fight it.
Myotonic community members speak about the impact that living with DM has on their lives.
Learn more about MDF's Advocacy Priorities and our new "Action Center"! In this webinar, MDF' Washington, D.C. based advocacy consultant, Kevin Brennan, leads a panel discussion with MDF advocates (Mark Planco, Belen Esparis, and Haley Martinelli) about strategies for raising awareness and driving US federal funding to DM research. He also unveils our plans to secure $10 million in new DM research funding as part of the Congressionally Directed Medical Research Program (CDMRP). Click here to Contact your Representatives in a single easy step! >>>
Join MDF Advocates across the U.S. who are making their voices heard in Congress! Please email your Senators and Representatives asking them to support $10 million in new DM research funding as part of the Congressionally Directed Medical Research Program (CDMRP)! In a few weeks, MDF Advocates will also be asking Senators to make DM eligible for research awards under the Senate initiated Peer Reviewed Medical Research Program (PRMRP). If we are successful, this will be the 8th year in a row DM has been included in PRMRP which has awarded $24 million in new DM research grants since 2018.
Click Here to Advocate Now!
Presented on September 9th, 2023.
Start the day off with a celebration of the DM community, as community leaders step onto the stage to receive special awards, including the 5th Annual Kayla Vittek Memorial Award for Outstanding Community Advocate, the Above & Beyond Award, and Lifetime Achievement Award.
Click here to learn more about the 2023 MDF Annual Conference.
Congratulations to Our Community Award Recipients!
MDF is proud to congratulate and honor our four Community Award recipients for their uncontested commitment and service to the myotonic dystrophy community:
- Margaret Bowler
Lifetime Achievement Award
- Rebecca Coplin
5th Annual Kayla Vittek Memorial Award for Outstanding Community Advocate
- Ann Woodbury
MDF Support Group Facilitator Warrior Award
- Kristen McClintock
MDF Support Group Facilitator Warrior Award
Presented on September 8th, 2023.
Gain insight and understanding on the important role the FDA plays in the drug approval process through a presentation from the FDA. This informative presentation will be followed by a panel discussion with the FDA, a DM expert clinician, and members of the DM Community. This session provides an opportunity for our community and clinicians to share the serious medical challenges facing our community with the FDA.
Speakers include:
- Nicholas Johnson, MD, MSci., FAAN, Virginia Commonwealth University
- Michelle Campbell, PhD, Federal Drug Administration
- Ami K. Mankodi, MD, Federal Drug Administration
- Kevin Brennan, MDF Advocacy Consultant
- Mark Planco
- Jeannine DeSoi
- Haley Martinelli
Click here to learn more about the 2023 MDF Annual Conference.
Presented on September 10, 2022.
A celebration of the DM community, including the 4th Annual Kayla Vittek Memorial Award for Outstanding Community Advocate presented by Lisa Harvey-Duren, as well as the celebration of the Above and Beyond Award and Lifetime Achievement Award Recipients.
MDF is thrilled to congratulate and honor our three award winners for their uncontested commitment and service to the myotonic dystrophy community:
- Emily Jones
4th Annual Kayla Vittek Memorial Award for Outstanding Community Advocate, presented by Lisa Harvey-Duren
- Luke Bolt
Above & Beyond Award, presented by MDF's CEO, Tanya Stevenson, EdD, MPH
- Tetsuo "Tee" Ashizawa, MD
Lifetime Achievement Award, presented by Larry Lord & Darren Monckton, PhD
Click here to learn more about the 2022 MDF Annual Conference.
Family members, caregivers and researchers describe their experiences living with myotonic dystrophy and research advances creating hope for the future.
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. Panelists discussed the disease symptom changes they have experienced living with myotonic dystrophy, followed by facilitated audience participation. This session is intended to amplify and deepen our understanding of disease changes and progression from the perspective of individuals and families living with DM.
Moderated by Charles Thornton, MD, University of Rochester
PowerPoint Presentation
Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.
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.
Read more about the tribute to Dr. Moxley.
