Piloting a New Format for Chapter Meetings: What We Learned and What’s Next 

By Jenny Gast, Director of Chapter Programs 

As the FSHD Society continues to grow, we’re reimagining how we connect our community across chapters. On June 25, we piloted a new Combined Chapter Meeting format for our East Coast chapters, part of a broader effort to create a more consistent and engaging experience for members nationwide.   

This new virtual format brought together multiple chapters in a single session and featured two distinct parts: an opening segment with Society-wide updates on research, therapy development, and organizational news, followed by smaller Zoom breakout groups organized by chapter. These breakouts provided space for discussion, connection, and peer support, preserving the community feel that makes our local chapter network so meaningful. 

The pilot saw strong participation, with 179 people registered and 71 logging in to attend. Nine Zoom breakout rooms were hosted during the event. The response has been very positive, and we are continuing to gather feedback through a member survey and follow-up conversations with Chapter Directors and facilitators to help refine the format. 

This structure reflects the evolving outlook of our Chapter Program. As we prepare for the potential arrival of approved therapies, it’s more important than ever to ensure that all chapters, regardless of size or leadership, have access to timely, accurate information and meaningful opportunities to engage. The combined meeting format allows us to scale those efforts while continuing to support local leadership and foster community. 

Looking ahead, we plan to roll out this new format more broadly, with the first nationwide implementation expected in late summer or early fall. While the structure may continue to evolve, the goal is to bring chapters together regionally for shared updates and breakout conversations tailored to their communities. We’re also exploring the idea of offering these combined meetings three times a year, spring, summer, and fall, in addition to any local meetings Chapter Directors choose to host. 

Be sure to watch the recording, featuring important updates from June Kinoshita, including highlights from the International Research Congress, clinical trial developments, and what’s ahead in FSHD therapy research. 

Thank you to everyone who participated in the pilot, and special thanks to the volunteer facilitators and chapter leaders who helped make it happen. Your engagement and feedback are helping shape the future of our Chapter Program. Together, we’re building a more unified, informed, and connected FSHD community.