The 2026 MDF Regional Conference in Kansas City brought the myotonic dystrophy community together for a day of learning, connection, and support.
2026 MDF Regional Conference in Kansas City
Kansas City, Missouri | April 11, 2026
Thank you to everyone who joined us for the 2026 MDF Regional Conference in Kansas City! Held in partnership with the University of Kansas Medical Center, this one-day, in-person conference brought together people living with myotonic dystrophy (DM), caregivers and family members, clinicians, researchers, and industry partners for a day of learning, connection, and community.
In MDF’s 18th year of conferences, the 2026 Kansas City Regional Conference welcomed more than 104 attendees from 12 states. Built for the DM community, the conference featured sessions from leading DM experts, updates on the latest research, community panel discussions, and opportunities to connect with others who truly understand life with DM.
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Program Highlights
The conference offered a robust, full-day program that included general sessions, breakout sessions, JOA programming, and a community reception with networking and a dance party!
Session topics included clinical trials and emerging treatments, industry updates, cardiac care, sleep and pulmonary health, palliative care, genetic counseling and family planning, exercise, and practical DM life hacks. The program also featured community favorites like Stump the Doctor and a Movement Moment.
The conference also included a dedicated space and program for Juvenile-onset Adults (JOA), with JOA-specific sessions such as ice-breaker games, mental health, exercise, Stump the Doctor, and games and karaoke.
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In Partnership with the University of Kansas Medical Center
MDF was proud to host this event in partnership with the University of Kansas Medical Center, an important hub for DM research. Dr. Jeffrey M. Statland serves as the principal investigator for research studies in myotonic dystrophy and is a Professor of Neurology at the University of Kansas Medical Center in Kansas City, Missouri. His research has focused primarily on the natural history of DM and the response to therapy for neuromuscular diseases. He completed a neuromuscular fellowship in Experimental Therapeutics of Neurological Diseases at the University of Rochester Medical Center.
Interested in learning more about myotonic dystrophy research and trials at the University of Kansas Medical Center? Check out the studies below!
- Assessing Pediatric Endpoints in DM1
For more information, contact Cassidy Nelson at cnelson15@kumc.edu - Study of ATX-01 in Participants with DM1
For more information, contact Cassidy Nelson at cnelson15@kumc.edu - Study of VX-670 in Adults with DM1
For more information, contact Ali Russo at aciersdorff@kumc.edu - Global Open-Label Extension Study of Del-desiran for the Treatment of DM1
For more information, contact Osvaldo Plascencia at oplascencia@kumc.edu
Access and Support
MDF worked to make the conference as welcoming and accessible as possible for the DM community. Registration was priced at $20 USD per adult ticket, and children 18 and under attended free. Tickets included conference sessions, meals, and other activities throughout the day.
To help reduce barriers to attendance, MDF offered financial aid for community members attending in person. This reflects a goal of the MDF Regional Conferences: making it easier for individuals and families to participate, ask questions, and connect closer to home.
MDF also supported a range of attendee needs. Dietary needs were collected in advance. In-person registration included breakfast, lunch, hors d’oeuvres, beverages, and all-day coffee and tea. Self-parking was covered for attendees, valet support was available for accessibility needs, and MDF arranged a 10% discount on mobility device rentals. The venue also offered a discounted room block and convenient transportation access, including hotel shuttle service and the free KC Streetcar.
Sponsors
Special thanks to our conference sponsors for helping make this event possible.
Lead Sponsor
Diamond Sponsor
Platinum Sponsor
Gold Sponsors
Silver Sponsors
Bronze Sponsors
Supporter Sponsors
