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.

Originally presented on June 20th, 2025.

Do you have questions for myotonic dystrophy (DM) doctors and therapists? Watch our Ask-the-Expert: The Emotinal Journey of DM. This features Missy Dixon, PhD, a Licensed Psychologist and Assistant Professor of Pediatrics at the University of Utah. 

Register once and you can join any of our 2025 Ask the Expert webinars! Join us at our next Ask the Expert webinar! Click here to find all our upcoming Ask the Expert dates and previously recorded sessions. >>>

Questions or comments? Contact MDF at 415-800-7777 or at info@myotonic.org.

 

 

Thank you to our 2025 Community Education Webinar Series Sponsors, Avidity Biosciences and Dyne Therapeutics!

MDF Resources referenced in this video:

• Myotonic Dystrophy & Mental Health Handbook
• Toolkits & Publications
• Support Groups
• Calendar of Events
• DM Drug Development Pipeline
• Myotonic Dystrophy Family Registry
• 2025 MDF Annual Conference
• Sign up for My Dispatch, our monthly e-newsletter!
   

About the Expert

Missy Dixon, PhD
Licensed Psychologist and Assistant Professor of Pediatrics

Missy Dixon, PhD, is a Licensed Psychologist and Assistant Professor of Pediatrics at the University of Utah. She specializes in mental health care for children, adolescents, and young adults with complex medical conditions, including neuromuscular disorders. Her research focuses on cognitive function and central nervous system involvement in muscular dystrophies, integrating neuropsychological assessments, neuroimaging, and patient-reported outcomes. She leads a longitudinal study examining CNS development in children with myotonic dystrophy and investigates key factors influencing quality of life in individuals with muscular dystrophy.

A celebration of the myotonic dystrophy (DM) community and presentation of MDF Awards, including the Kayla Vittek Memorial Award for Outstanding Community Advocate, SGF Warrior Award, and other inspiring stories from our community.

MDF is proud to congratulate and honor our four Community Award recipients for their uncontested commitment and service to the myotonic dystrophy community:

• Shaun Moore
  MDF Support Group Facilitator Warrior Award
• Cynthia “Cindy” Hubert
  MDF Support Group Facilitator Warrior Award
• Beth Feigenblatt
  Kayla Vittek Memorial Award for Outstanding Community Advocate
• Midori Senoo, DM Family Japan
  Above and Beyond Award

Thank you to our 2025 MDF Conference Sponsors for helping make this event possible:

• Lead Sponsor: Avidity Biosciences
• Diamond Sponsors: Dyne Therapeutics and Arthex Biotech
• Platinum Sponsors: PepGen and Vertex Pharmaceuticals
• Gold Sponsor: Sanofi
• Bronze Sponsor: Lupin Neurosciences

Explore our other sessions and read about the incredible 2025 MDF Conference in Indianapolis, Indiana!

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!