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.

Dr. Jacinda Sampson describes strategies for ensuring a successful visit to your medical professional.

Dr. Darren Monckton describes anticipation in myotonic dystrophy, the process by which the disease increases in severity as it is passed from generation to generation.

Watch Part 2 of this series

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

The Myotonic Dystrophy Foundation is excited to introduce “Understanding Myotonic Dystrophy”, a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers!

Our first animation “Understanding Myotonic Dystrophy – The Basics” is a broad introduction to myotonic dystrophy to help increase awareness and understanding.

We are sincerely thankful to all physicians, care providers, and patients for their help providing suggestions, opinions, and input regarding content and design throughout this process. Please let us know what topics you would like us to cover in a future animation. https://forms.gle/DnF1T46cqa1P1w4ZA

Learn more about myotonic dystrophy (DM), explore resources, and find support at https://www.myotonic.org/

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Imagine waking up one day and realising your muscles don’t work quite the way they used to. This could be the first sign of Myotonic Dystrophy, or DM.

Myotonic dystrophy is an inherited disease and a type of muscular dystrophy that frequently causes prolonged muscle contractions and muscle weakness. It can impact everyday activities.

Myotonic dystrophy is caused by an expanded repeat in the DNA that is translated into RNA, which then forms hairpin like structures and traps important proteins.

It comes in two forms: Type 1 and Type 2. Type 1 is the most common. It is caused by an expansion in the DMPK gene. Type 2 is caused by an expansion in the CNBP gene.

The symptoms of myotonic dystrophy can vary a lot. The body systems affected, the severity of symptoms, and the age of onset varies greatly between individuals, even within the same family.

As many as 1 in 2,100 or over 3 million individuals worldwide are affected by the disease. It impacts people of all ages, ethnicities, and backgrounds.

Living with myotonic dystrophy means managing symptoms through a combination of clinical care, medications, and/or lifestyle changes. Your doctor will connect you to specialists and work with you and your care team to develop a personalized treatment plan.

If you or someone you love has been diagnosed with myotonic dystrophy, remember, you are not alone. Support groups and resources are available to provide guidance and community connections.

Presented at the MDF 2024 Regional Conference in Iowa City, IA, on Saturday, April 20, 2024 at the Iowa Memorial Union building at the University of Iowa in Iowa City, IA.

This session provides an overview of occupational therapy and how you can utilize this form of healthcare and the services it provides.

Speakers: Mikayla Miller, MOT, OTR/L, CBIS

Click here to learn more about the 2024 MDF Regional Conference in Iowa City, IA!

Presented at the MDF 2024 Regional Conference in Gainesville, FL, on Saturday, March 23, 2024 at the Harrell Medical Education Building at the University of Florida.

Learn how moderate exercise can be safe and helpful for people with myotonic dystrophy. Learn about the latest studies on DM and exercise, how to choose exercises with your healthcare team, and some examples of DM-friendly exercises.

Speaker: Donovan J. Lott, PT, PhD, CSCS, Research Professor, Department of Physical Therapy, University of Florida

Click here to learn more about the 2024 MDF Regional Conference in Gainesville, FL at!

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.

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.