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.

Myotonic Dystrophy in Motion Awareness Month 2024

Week 3: The Natural World
The Benefits of Nature & Breathwork

Explore the connection between nature, wellness, and breathwork with Katy Eichinger, PhD, DPT, University of Rochester, and Payge Purdue, certified yoga and Qigong instructor. Discover the transformative power of mindfulness and breathwork practices to enhance your daily movement routines.
 

Our Presenters

Katy J. Eichinger, PhD, DPT
Dr. Katy Eichinger is involved in the clinical care of adult and pediatric patients with neuromuscular diseases. Additionally, she is part of the neuromuscular research team and is involved in natural history studies and clinical trials for patients with Duchenne Muscular Dystrophy, Charcot-Marie-Tooth disease, myotonic dystrophy, and facioscapulohumeral dystrophy. Her interests are in outcome measures, health and wellness, and balance. She has been involved with clinical evaluator training and assisted in preparing the manual for the pediatric assessment for the CMT natural history study. Her interests are in outcome measures, health and wellness, and balance.

Payge Perdue
Payge Perdue is a trauma-informed registered yoga teacher and qigong instructor. With a focus on creating a stronger mind-body connection, Payge brings a meditative atmosphere to the practice. With over 8 years of experience, she brings a wealth of knowledge and a light-hearted, easy approach to each class. She believes that every person can find the calm and stillness within and strives to create an inclusive space for students to explore their practice. She integrates mindfulness and breathing techniques into each class to aid students in cultivating a deep connection with their mind and body.
 

Myotonic Dystrophy In Motion Awareness Month

Movement makes connections, and we’re excited to bring the myotonic dystrophy (DM) community together through weekly themes, action items, and resources. The cornerstone of this awareness month will be webinars and virtual classes that follow weekly themes and invite the community to get active at their own comfort level. In addition to these activities, we will be connecting interested participants in a buddy system that allows folks to share their movement practices while making new friends.

Click here to learn more about the 2024 Myotonic Dystrophy In Motion Awareness Month!
 

Participation Disclaimer

Before participating in any MDIM Awareness Month programming, it is important to consult with your physician or other qualified healthcare professional to ensure that exercise is safe and appropriate for your individual needs. The information provided in this exercise program is for educational and informational purposes only and should not be construed as medical advice or a substitute for professional medical expertise or treatment.

By participating in this exercise program, you acknowledge that there are inherent risks involved in any physical activity, and you voluntarily assume full responsibility for any and all risks. You agree to release, discharge, and hold harmless Myotonic Dystrophy Foundation and any contractors from any and all claims, liabilities, or damages arising out of your participation in the program.

If at any time during the exercise program you feel discomfort, pain, dizziness, or any other unusual symptoms, you should stop immediately and consult with a medical professional.

Myotonic Dystrophy In Motion Awareness Month 2024

Week 2: Little Things Count
Exercises for Everyday Life

Join MDF Grantee, Kristina Kelly, DPT, University of Missouri-Columbia, for a webinar focusing on incorporating small exercises into your daily routine. Learn about the importance of a balanced movement practice and discover simple movements that can enhance your overall well-being. (This session serves as an amazing companion to the MDF Exercise Guide for People Living with Myotonic Dystrophy.)

Click here to learn more about the 2024 Myotonic Dystrophy In Motion Awareness Month!
 

Our Presenter

Kristina Kelly, PT, DPT, MS, EdM, NCS, CPT, PES
Dr. Kristina Kelly’s research focuses on understanding and treating motor dysfunction and fatigue in people aging with neuromuscular conditions. She uses clinically relevant methods to study the motor unit and the peripheral and central influences on its function in health and disease across adulthood. Through identification of convergent as well as divergent mechanisms amongst healthy aging and neuromuscular disease populations, her work aims to explain common targets for function-preserving or -restoring interventions while also providing insight into the potential need for specialized approaches in disorders of the motor unit. The overall goal of her work is to develop evidence-based, patient-centered therapeutic approaches with emphasis on exercise and healthy behaviors to enhance motor performance and maximize health span.

Click here to read more about MDF Research Grant Recipient, Dr. Kristina Kelly!
 

Myotonic Dystrophy In Motion Awareness Month

Movement makes connections, and we’re excited to bring the myotonic dystrophy (DM) community together through weekly themes, action items, and resources. The cornerstone of this awareness month will be webinars and virtual classes that follow weekly themes and invite the community to get active at their own comfort level. In addition to these activities, we will be connecting interested participants in a buddy system that allows folks to share their movement practices while making new friends.

Click here to learn more about the 2024 Myotonic Dystrophy In Motion Awareness Month!
 

Participation Disclaimer

Before participating in any MDIM Awareness Month programming, it is important to consult with your physician or other qualified healthcare professional to ensure that exercise is safe and appropriate for your individual needs. The information provided in this exercise program is for educational and informational purposes only and should not be construed as medical advice or a substitute for professional medical expertise or treatment.

By participating in this exercise program, you acknowledge that there are inherent risks involved in any physical activity, and you voluntarily assume full responsibility for any and all risks. You agree to release, discharge, and hold harmless Myotonic Dystrophy Foundation and any contractors from any and all claims, liabilities, or damages arising out of your participation in the program.

If at any time during the exercise program you feel discomfort, pain, dizziness, or any other unusual symptoms, you should stop immediately and consult with a medical professional.

Presented on September 9th, 2023.

Irene Sonu, MD
Stanford University

This session explores the ways in which DM2 affects the GI system, treatment and management strategies aimed at alleviating GI issues, and improving quality of life.

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

Presented on September 8th, 2023.

John Day, MD, PhD
Stanford University

This session will cover sleepiness and other sleep disturbance considerations for both DM1 and DM2. Learn from a leading expert about sleepiness, and other sleep disturbances related to DM1 and DM2, best practices for care, monitoring, and self-management. Learn also about the latest research and how you can get involved!

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

Presented on July 15, 2022.

Do you have questions for DM doctors and therapists? Join a leading medical or research professional for an “Ask-the-Expert” session on DM & Palliative Care with Shauna Gibbons, MD, an Assistant Professor of Medicine in the Division of Palliative Medicine at the University of Kansas Medical Center.

Speakers to include:

Shauna Gibbons, MD is an Assistant Professor of Medicine in the Division of Palliative Medicine at the University of Kansas Medical Center. Her current work focuses on expanding ambulatory palliative medicine at the University of Kansas Health System to serve a wider range of serious illnesses including pulmonary and neurological diseases. She is a core faculty member in the Internal Medicine Residency program with a focus in diversity, equity, and inclusion. She received her medical degree from the University of Arkansas for Medical Sciences, then completed an Internal Medicine residency and Palliative Medicine fellowship at the University of Kansas. In her spare time, she enjoys painting, cooking, and enjoying the outdoors with her husband and dog.

Click here to find all our upcoming “Ask-the-Expert” question sessions!

Originally presented on September 10th. 2021 as a part of the DM2 Track at the 2021 Virtual MDF Annual Conference.

Learn about genetic factors causing DM2, the different body systems affected, the most common symptoms, and how best to manage and provide care for the disease from a leading expert. Appropriate for newly diagnosed and those living with DM2 for many years.

Speakers include:

• Johanna Hamel, MD
• Lindsey Baker, PT
• Araya Pwanant, MD

Originally presented on September 10th, 2021 as a part of the DM1 Track at the 2021 Vitual MDF Annual Conference.

Learn about genetic factors causing DM1, the different body systems affected, the most common symptoms, and how best to manage and provide care for the disease from a leading expert. Appropriate for newly diagnosed and those living with DM1 for many years.

Presented by Jacinda Sampson, MD, PhD.