Community Favorite

"Hands" featuring Eric Hutchinson

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.

Pain and DM2

A father and son living with myotonic dystrophy type 2 describe the unique pain they experience with this disease.

Social Security Administration Demystifies the Benefits Process - 2023 MDF Annual Conference

Presented on September 8th, 2023.

Diana Varela, Public Affairs Specialist
Social Security Administration

Joyce Lee, Medical Relations Officer
Department on Disability Services

Gain a better understanding of the role of the Social Security Administration (SSA) programs, benefits, and services available to the DM community in the US. Leaders from the SSA will join this panel to help demystify the application, denial, and appeal process.

Click here to learn more about the 2023 MDF Annual Conference.

Advocating for Myotonic Dystrophy Research - International Myotonic Dystrophy Awareness Day 2022

Presented on September 15, 2022.

Join MDF on International Myotonic Dystrophy Awareness Day on September 15th to learn how advocates can increase #myotonicDystrophy (DM) awareness, grow DM research funding, and advance policies to accelerate the approval of drugs to treat and eventually cure DM.

As Congress advances spending legislation that includes biomedical research funding, we will be closely following these proceedings, and as we identify opportunities for MDF advocates to influence this legislation, we will be urging advocates to follow-up with their US Senators and Representatives.

Click here to learn more about the success of MDF's first Advocacy Week and the critical need to continue federal funding of DM research.

Click here to find more myotonic dystrophy advocacy resources.

Myotonic Dystrophy Resources

 

Learn about the different resources that have been created for the Myotonic Dystrophy community! This presentation provides an introduction to help familiarize you with the resources and support options available for families affected by myotonic dystrophy.

The resources discussed during this video can be found at:

For newly diagnosed families, we recommend the following resources:

Have questions? Need more help? Contact us!