Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
by Beth Johnston, FSHD Society
“It’s not just about giving back—it’s about growing, having fun, and being part of something truly impactful.” – anonymous
“Seeing so many faces (on my Zoom screen!) with enthusiasm, joy and eagerness…was just the uplift that I needed. I’m ready to roll forward.” – Ranae Beeker, Washington
“It was humbling to hear the stories of those impacted by this disease and connect with so many amazing people.” – Jane Roberts, Alberta, Canada
“I’d highly recommend that anyone consider exploring what may be a good fit for you.” – Zach Allison, Oklahoma
“These annual meetings give us opportunities to see old friends and make new ones, to collaborate on news ideas, and learn the direction for the year ahead.” – Kathy Senecal, Connecticut
For the seventh consecutive year, the FSHD Society brought together its volunteer leaders from across the United States and Canada for the annual Volunteer Leadership Summit. Held on February 1-2, 2025, this hybrid event combined in-person gatherings at Chicago’s Hilton O’Hare with virtual participation via Zoom. The weekend was a dynamic mix of learning, collaboration, camaraderie, and even a touch of fun.
The summit’s theme, “Powering the Path Forward,” underscored the pivotal year ahead for FSHD clinical research, community engagement, and advocacy efforts. The event began with inspiring talks from Archer Sverdrup and Tim Hollenback, who shared their personal journeys and encouraged attendees to reflect on their own paths within this mission-driven community.
Participants engaged in a variety of educational sessions designed to equip them with tools and insights for advancing FSHD initiatives. Topics ranged from “building a treatment-ready ecosystem” to updates on the latest therapy developments and clinical trials.
Afternoon breakout sessions offered opportunities for smaller groups to delve deeper into subjects such as “Government Advocacy in 2025,” “Using BetterLife,” storytelling techniques, and collaborative roundtable discussions aimed at generating fresh ideas.
The summit concluded on an emotional note with remarks from Jack Gerblick, who reminded volunteer leaders of their profound impact. “Never forget that one can inspire many,” he said. “You are the reason families find hope. You are the reason voices are heard. Together, we are not just dreaming of a cure; we are building a legacy of love and resilience.”
This year’s summit reinforced the collective strength of the FSHD Society’s network of leaders. As they move forward into 2025, these dedicated volunteers remain united in their mission to drive progress and bring hope to families affected by facioscapulohumeral muscular dystrophy.
We have all types of roles for volunteers – to suit any level of time, skill or desire. Contact Beth Johnston to explore these opportunities. Maybe we will see you at the Volunteer Leadership Summit next year!
