This July, the Myotonic Dystrophy Foundation (MDF) hosted Myotonic Dystrophy In Motion Awareness Month 2025! With over 250 registrations from 16 different countries and the theme Movement Matters, our program invited community members to get moving every week.
Throughout the month, MDF hosted 4 Movement Monday Classes with exercises led by experts on the four pillars of movement: Resistance Training, Aerobic & Cardio, Balance & Fall Prevention, and Flexibility. These sessions were each followed by a Movement and Meeting Happy Hour, giving participants the chance to connect, share their goals and challenges, and celebrate their progress together.
MDF also hosted a special Stump the Doctor session with Dr. Donovan Lott (University of Florida) and Dr. Matt Wheeler (Stanford University). Their discussion on myotonic dystrophy, movement, and heart health will be featured as a podcast through the American Physical Therapy Association to help educate physical therapists across the United States!
MDF offers a huge thank you to all of our amazing panelists and presenters, the MDF Movement Committee, and our event sponsor, Avidity Biosciences, for helping make this program possible! Attendees shared gratitude for the safe and fun ways to connect and exercise at home, and for practical tips on modifying exercises to meet the changing needs of people living with DM.
All month long, the DM community came together to explore the power of movement through weekly activities, expert-led webinars, and opportunities to share personal movement practices. Whether you’re starting a new routine or building on existing habits, we hope to continue supporting your daily movement!
Missed out on attending our sessions live? Subscribe to the MDF YouTube channel to be notified as soon as our recorded sessions become available on MDF’s Digital Academy!
Thank you to our sponsor, Avidity Biosciences, for making this event possible!
Special thanks to the MDF Movement Committee for helping design this inspiring program.
What is Myotonic Dystrophy In Motion? What started as an idea for MDF activewear has evolved into an initiative to unify, inspire, and encourage the international DM community to start moving! Click here to learn more about Myotonic Dystrophy In Motion! >>>
Check Out Our Weekly Movement Mondays
Each Monday in July featured a movement expert exploring one of the Pillars of Movement from MDF’s Exercise Guide for People Living with DM. These 30-minute sessions are designed to be accessible and adaptable—whether you’re just getting started or looking to enhance your regular routine.
- July 7: Resistance Training
Led by Tina Duong, MPT, PhD
This session will focus on strength training using resistive exercises. You can follow along with weights, elastic bands, or everyday household items—whatever works for you.
- July 14: Balance and Fall Prevention
Led by Katy Eichinger, PhD, DPT
Learn balance-boosting techniques and exercises to help prevent falls. This session is designed for all levels and abilities.
- July 21: Aerobic and Cardio
Led by Kristina Kelly, PT, DPT
Dr. Kelly will guide you through a heart-healthy cardio session with options for seated or standing movement. No matter how you move, this session offers something for everyone.
- July 28: Flexibility and Chair Yoga
Led by Mariah Santellan
Wrap up the month with a calming, accessible chair yoga class that emphasizes flexibility and breath. This session will help you stretch, relax, and stay in motion.
Moving and Meeting
After each Movement Monday session, stick around for a virtual community gathering. These casual “happy hour” style conversations are led by MDF staff and support group facilitators. You’ll have a chance to reflect on what you learned, share your experiences, and connect with others who are incorporating movement into their daily routines.
Bonus Session July 23rd—Stump the Doctor: Exercise for DM
On Wednesday, July 23rd at 4pm Pacific / 7pm Eastern, join Dr. Andy Rohrwasser, MDF Chief Scientific Officer, for a special discussion on the role of exercise in myotonic dystrophy. He’ll be joined by Movement Committee Member Donovan Lott, PhD, DPT and cardiologist Matt Wheeler, MD to answer your questions and share the latest research on how movement supports muscle health and long-term well-being in people with DM.
Community Competition: Share Your Movement Moments
We know that everyone moves differently—and all movement counts. That’s why we’re celebrating your commitment to staying active, however it looks for you.
Whether you stretch for 5 minutes or complete a full workout, every entry counts. For each submission, you’ll earn 5 drawing tickets toward a chance to win a hotel stay at your next MDF Regional Conference!
Need ideas? Visit the Myotonic Dystrophy In Motion webpage or download our Exercise Guide for simple, DM-friendly activities you can try out.
Luke and Jodie Bolt.
Make Your Movement Matter: Fundraise for a MDF
This July, turn your movement into momentum for change by fundraising during Myotonic Dystrophy In Motion Awareness Month. Whether you're working toward physical therapy goals, participating in an endurance event, or hosting a community class, your movement can help drive MDF’s mission of community, care, and a cure.
MDF’s DIY Fundraising Toolkit makes it easy to get started. Create a custom donation page using our Classy platform, share your story, and invite friends and family to support your journey. From personal challenges to team events, every step, stretch, or roll can raise awareness and support for the DM community.
Need ideas or support? The MDF team is here to help you brainstorm, plan, and promote your fundraiser every step of the way. Email MDF at development@myotonic.org or call 415-800-7777.
Get Moving With Limited Edition 2025 Awareness Month Apparel!
Only available to order through the end of July 2025! Raise awareness, show support, and get moving with the 2025 limited edition Myotonic Dystrophy In Motion Awareness Month T-shirt! Movement Matters, and we’re excited to continue bringing the DM community together through weekly themes, action items, and resources.
Purchase Myotonic Dystrophy In Motion Athletic Gear!
After the incredible outpouring of support and interest in his MDF Bike Jersey at the 40th Annual Seattle to Portland Bike Ride, community member Luke Bolt has continued to keep up the momentum with In Motion activewear!
Downloadable Resources
Exercising with Myotonic Dystrophy Infographic: Designed for People Living with DM. Exercise may help optimize function and maintain strength in people living with myotonic dystrophy. This one page summary sheet outlines ideas for finding motivation, monitoring your exercise, and adding movement to your daily life.
Exercise Guide for Individuals with Myotonic Dystrophy: Designed for People Living with DM. This guide is written by two physical therapists who specialize in working with individuals with DM, and includes information on the benefits of exercise for DM, recommendations on aerobic activity, types of exercise, monitoring exercise, exercise strategies and finding motivation.
Nutrition Guide for Individuals with Myotonic Dystrophy: Designed for People Living with DM. This guide is written and reviewed by nutritionists who specialize in working with individuals with DM, and includes information on diet and DM, managing constipation, being overweight/underweight with DM, managing swallowing problems, feeding tubes, supplements, and sample meals.
Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy: Designed for Physical Therapists. Most individuals living with myotonic dystrophy (DM) will probably first encounter a physical therapist in the multidisciplinary clinic where they receive care. These physical therapy guidelines for DM address the role that the physical therapist plays in DM care, including evaluation, education, instructions and physical movement recommendations.