2025 MDF Conference

May 1st, 2nd, 3rd & 4th
The Westin Indianapolis Hotel
 

The 2025 MDF Conference Breaks Records and Builds Connections in Indianapolis!

Thank you so much for joining us in Indianapolis, and online, for the 2025 MDF Annual Conference! The 2025 MDF Conference, often called the “DM family reunion”, was our largest and most international gathering to date. With more than 700 attendees from 34 US States and 10 countries, we were thrilled to welcome such a vibrant and engaged global community.

Click here to learn more about MDF's past and upcoming conferences.

The Professional Track kicked off on Thursday, May 1st, with the Cardiac Phenotypes & Clinical Trial Endpoints in DM Workshop led by the DM Clinical Research Network (DMCRN), followed by the 5th Edition of Euro-DyMA's Pharma Day, presented in partnership with MDF. A welcome reception concluded the day for all in-person attendees. Educational and networking sessions continued through Saturday, May 3rd, 2025, and wrapped up with our new Sunday Morning Workshops on the 4th at The Westin Indianapolis.

We hope you enjoyed this year's sessions exploring research, drug development, symptom management, and our opportunities for formal and informal networking, wellness, and fun.

Click here to view all the photos from the 2025 MDF Annual Conference on Facebook!

Congratulations to Our Community Award Recipients!

Each year, MDF honors members of our community for their exceptional commitment and service to the myotonic dystrophy community. Congratulations to our 2025 award recipients:

• Midori Senoo - Above and Beyond Award
   
• 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

Their leadership continues to uplift and inspire our entire community! Click here to watch the award presentations from our Stories of Inspiration session! >>>
 

 

Unmasking Joy: Evenings Full of Fun & Connection

Friday night brought our community together for a masquerade dinner, where laughter, heartfelt connection, and new friendships took center stage!

Saturday's Dinner & Dance Party brought even more excitement with our Mystery Box Challenge to support MDF's mission. Before the dancing began, we were treated to an unforgettable live performance of Katy Perry's "Roar" by Zoé Berman, who lit up the room with her powerful voice and presence. Congratulations on your standing ovation, Zoé!

Mystery Box Grand Prize Winners!

• Jennifer Sage - Trip to the 2025 MDF Gala in New York City!
• Marc Steele - New iPad
• Carly Hunt - $250 Amazon Gift Card

 

Improving the Conference Experience

To better serve our community, MDF introduced a new program in 2025, the Sunday Morning Workshops. These personalized sessions allowed attendees to meet one-on-one with experts on important topics, including:

• Genetic Counseling: Understanding genetic testing options and hereditary considerations.
• Family Planning: Personalized reproductive guidance in the context of myotonic dystrophy.
• Accessible and Adaptive Devices: Exercises, adaptive strategies, and equipment recommendations to improve physical function and quality of life.
• Insurance, Social Security & Medicare: Strategies to navigate healthcare systems, manage medical expenses, and access necessary treatments.
• Caregiver Resources: Tools for managing caregiver stress, accessing support networks, and ensuring the well-being of caregivers and their loved ones.

 

New Professional Sessions

MDF's Professional Track began with the Cardiac Endpoints Workshop, co-hosted with the DMCRN, covered cardiology care standards, neuromuscular cardiology, electrophysiology, cardiac imaging, and clinical trial outcome measures. 

That afternoon, the 5th Edition of Euro-DyMA's Pharma Day, presented in partnership with MDF, connected pharmaceutical innovators, researchers, clinicians, and patient organizations together for technical presentations and face-to-face discussions on DM drug development.

Special thanks to our Lead Sponsor, Avidity Biosciences, our Diamond Sponsor, Dyne Therapeutics, our Platinum Sponsors, PepGen and Vertex, Gold Sponsor, Sanofi and Bronze Sponsor, Lupin Neurosciences, for helping make the Cardiac Endpoints Workshop and PharmaDay possible.

On Saturday, professionals were invited to attend the Young Investigators' Workshops, which focused on providing personalized guidance on advancing the careers of the next generation of DM researchers.

Interested in the DM research? Click here to view the 2025 Research Poster Abstracts!

 

Our Program & Recorded Sessions

With over 70 sessions spanning clinical care, research, advocacy, and wellness, the 2025 MDF Conference offered meaningful learning and community-building opportunities for everyone in the DM community.

Click here to download a PDF of the MDF Annual Conference Program Book!

Missed a session of want to revisit a favorite? MDF is actively working to make recorded sessions publicly available on the Digital Academy!

What is the MDF Digital Academy? It's our free, on-demand video catalog where you can re-watch and share your favorite conference sessions, webinars, technical explanations, and stories of hope from the DM community. Click here to start exploring the MDF Digital Academy.