全加分会全国会议 – 2026年2月5日 

by Karen Camarta, Alberta Chapter Director 

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The Canadian FSHD Community gathered on February 5第 for the second Canada-Wide Chapter meeting, co-hosted by our Alberta and Quebec Chapters. The incredible turnout really showed how much our community cares about the future of FSHD patients and our drive to find a treatment!  

We had representatives from FSHD 加拿大基金会, Scholar Rock, Myologica, Avidity, Lumiio and CNDR – who walked us through some of the most promising research and studies that are on their way. There is so much remarkable work underway, fueling 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 这里.  

As Neil Camarta mentioned, the most important thing Canadian FSHD patients can do right now is register, register, register. If you haven’t already, get yourself on the Canadian Neuromuscular Disease Registr (CNDR). Look out for the upcoming release of 美好生活 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 临床试验 and reach out to your clinic to see if you are eligible.