Follow-up: All Canada Chapters Virtual Meeting – February 5, 2026

Thank you to our Canadian FSHD Community for the incredible turnout at our second Canada-Wide Chapter meeting on February 5th, co-hosted by our Alberta and Quebec Chapters. It was wonderful to see so many of you there. It really shows how much our community cares about the future of FSHD patients and our drive to find a treatment! 

We had representatives from FSHD Canada Foundation, Scholar Rock, Myologica, Avidity, Lumiio and CNDR walk us through some of the most promising research and studies that are on their way. There is so much remarkable work underway, fuelling our belief that we’re just a handful of years from a treatment. 

If you missed the call, or want to listen again, please find both the recording and the transcript HERE. 

As Neil Camarta mentioned, the most important thing you can do right now is register, register, register. Get yourself on the Canadian Neuromuscular Disease Registry, if you haven’t already. Look out for the upcoming release of BetterLife FSHD in Canada, then register there as well. These clinic-focused and patient-focused registries are designed to work hand-in-hand to not only inform research and studies, but to support FSHD patients in their journey. 

Many of you are also aware that Avidity’s Phase 3 Trial is underway. Recruiting is happening in Calgary and Ottawa, with Edmonton and Montreal to follow imminently. If you’re interested in participating in this study, or any others that are expected this year, find details at clinicaltrials.gov and reach out to your clinic to see if you are eligible.