This past weekend, the FSHD community in Canada came together in a powerful display of unity, resilience, and purpose. Hosted by the FSHD Society Alberta Chapter and the FSHD Canada Foundation, the Walk & Roll event in Calgary was more than a fundraiser — it was a celebration of connection, advocacy, and hope.
With nearly $50,000 raised — double the original goal — the event was a resounding success. Families, friends, researchers, and advocates gathered to raise awareness for facioscapulohumeral muscular dystrophy (FSHD), share stories, and strengthen the bonds that make this community so unique.
At Project Mercury, we believe that local action fuels global progress. Events like Walk & Roll are a testament to the power of grassroots leadership and the importance of community-driven momentum. They remind us that while FSHD may be rare, the determination to overcome it is anything but.
We were especially inspired by conversations around BetterLife Canada, an initiative launching soon in partnership with the University of Calgary and the Canadian Neuromuscular Disease Registry. This patient-powered platform will play a vital role in improving care and accelerating readiness for future treatments — a mission that aligns closely with Project Mercury’s global objectives.
As we continue to build a coordinated, international strategy for FSHD treatment readiness, we draw strength from events like this. They show us what’s possible when communities mobilize, when voices are amplified, and when every step — or roll — is taken together toward a shared goal.
To everyone who made the Walk & Roll possible: thank you. Your leadership is shaping the future of FSHD care, not just in Canada, but around the world.
Together, we are building a global movement — one community at a time.