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.

Originally presented on October 18th, 2024.

Do you have questions for myotonic dystrophy (DM) doctors? Join gastroenterologist, Dr. Irene Sonu from Stanford Medicine, for an "Ask the Expert" webinar on gastrointestinal (GI) issues and DM!

Find all our upcoming Ask the Expert dates and previously recorded sessions! >>>

MDF Resources referenced in this video:

• 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 our Myotonic Dystrophy Expert

Dr. Irene Sonu, Gastroenterologist, Stanford Medicine 

Dr. Irene Sonu is a Gastroenterologist at Stanford Medicine. She is passionate about gut health and strive to provide the best care to my patients. She specializes in complex motility disorders of the gastrointestinal tract. Her areas of clinical expertise include achalasia, dysphagia, eosinophilic esophagitis, gastroesophageal reflux disease, gastroparesis, functional dyspepsia, irritable bowel syndrome, and pelvic floor dysfunction. Dr. Sonu also sees patients in need of fecal microbiota transplant for recurrent C. difficile infection.

Presented at the 2024 MDF Regional Conference on Saturday, June 1, 2024 at the Westin Seattle in Seattle, WA.

Join this session to gain an overview of occupational therapy and exercise as they relate to myotonic dystrophy. Learn about modifications to help daily life and how exercise is safe and may be effective for individuals with myotonic dystrophy.

Speakers: Nassim, Rad, MD

Click here to learn more about the 2024 MDF Regional Conference in in Seattle, WA!

Presented at the 2024 MDF Regional Conference on Saturday, May 18, 2024 at Covel Commons on the UCLA campus in Los Angeles, CA.

This session covers cardiac considerations in myotonic dystrophy including how DM can affect the heart, common issues, the latest research, and best practices for care.

Speakers: Daniel Cruz, MD, PhD, UCLA Health

Click here to earn more about the 2024 MDF Regional Conference in in Los Angeles, CA!

Presented at the 2024 MDF Regional Conference on Saturday, May 4, 2024 at the Dunn Tower at Houston Methodist in Houston, TX.

Learn about nutrition and swallowing difficulties in myotonic dystrophy. The session will cover adaptive eating techniques and dietary recommendations that cater to the unique swallowing challenges faced by individuals with DM. Gain practical guidance on enhancing nutritional intake and managing dysphagia, improving overall health and daily functioning.

Speakers: Anna Miller, MS, RD, LD, Senior Clinical Dietitian & Carolyn Martinez, M.A., CCC-SLP, Speech Pathologist, Houston Methodist

Click here to learn more about the 2024 MDF Regional Conference in in Houston, TX!

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 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 is for those new to the DM1 community and those seeking a refresher. It includes an overview of DM1 genetics, symptoms, self-management, and working with your clinical care team to ensure the best quality of life.

Speaker: Andrea Swenson, MD Medical Director, University of Iowa Myotonic Dystrophy Clinic

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

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 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.

This session explores the relationship between myotonic dystrophy and sleep and breathing issues, covering prevalence, impact, and emerging research. Gain practical insights and best practices for managing sleep and breathing issues in both DM1 and DM2, empowering better care and self-management.

Speaker: Megan M. Lowery, MD, Assistant Professor of Medicine, Division of Pulmonary, Critical Care & Sleep Medicine, University of Florida

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

Originally presented on July 25th, 2024.

Do you have questions for myotonic dystrophy (DM) doctors? Join world-class DM cardiologist, Dr. William J. Groh, for an "Ask the Expert" webinar on DM and the heart!

Find all our upcoming Ask the Expert dates and previously recorded sessions! >>>

Myotonic Dystrophy Cardiac / Heart Resources

• Myotonic Dystrophy and the Heart: A Community Guide: For individuals living with myotonic dystrophy, heart or “cardiac” issues can pose a serious threat to their health. Since the heart is itself a muscle, people living with myotonic dystrophy type 1 (DM1) or type 2 (DM2) can experience cardiac issues. This resource aims to help people living with DM understand heart health risks and how they are managed.
   
• Consensus-based Care Recommendations for Cardiologists Treating Adults with Myotonic Dystrophy Type 1: In order to improve and standardize care for people living with myotonic dystrophy, 10 leading myotonic dystrophy (DM1) cardiologists in Western Europe, the UK, Canada, Japan and the US joined together to create these Consensus-based Care Recommendations! 

About our Myotonic Dystrophy Expert

Dr. William J. Groh, MD, MPH

Dr. William J. Groh is a board-certified Internal Medicine Specialist, Cardiologist, and Cardiac Electrophysiologist. He has been involved in providing clinical care of patients with myotonic dystrophy and cardiac issues since 1994. Dr. Groh has conducted clinical research to determine how best to assess the heart in myotonic dystrophy. 

Dr. Groh led a multicenter group assessing cardiac outcomes in individuals with myotonic dystrophy type 1. He was the lead author on an international consensus document on cardiac care for patients with neuromuscular disorders published recently. Dr. Groh is currently the Chief of Medicine at the Ralph H. Johnson VAMC in Charleston, SC and holds an academic appointment at the Medical University of South Carolina. Dr. Groh continues to provide care for patients with cardiac and cardiac arrhythmia issues.