We can change the future of FSHD. Double your impact while matching funds last!
We can change the future of FSHD. Double your impact while matching funds last!
by Beth Johnston
Earlier this month, we added the 4th Canadian Chapter to the roster of our growing FSHD Communities! The Quebec Chapter is led by father/son duo Sylvain and Louis-Vincent Côté, who live just outside of Montreal in Mont-Saint-Hilaire. We are thrilled that they have joined our ‘Army of Advocates’ to grow active communities across Canada and the U.S.! “One of the reasons why we decided to get involved as chapter co-directors is because we noticed, in our journey with FSHD, that there was a lack of resources and information about this condition. Our objective is to become a reference for patients and their families. We want to mobilize as many patients as possible to build a strong community and make the province an attractive location for clinical trials.” Learn more about this awesome team HERE.
The growth of our Canadian Chapter program began back in 2021, when Carrie Wilkinson from Sunderland, Ontario reached out to the Society.
“My daughter had just been diagnosed with FSHD and I was feeling overwhelmed and alone. I found the FSHD Society’s website, and noticed there wasn’t a chapter near me, and thought ‘we need to get something started here for families like ours’”, Carrie explained. “Since then, we have met numerous people with FSHD and have a real sense of community now.”
The Ontario Chapter was born, and the first Canadian Walk & Roll to Cure FSHD was held in September of 2021 in Mississauga, ON. Join them this year on September 13th for their 5th annual event!
The FSHD Society already had a relationship with the FSHD Canada Foundation, which was founded in 2010 by Neil Camarta and Craig Kelley, from Calgary, Alberta. As Neil explains “It all happened in Vegas! The Camarta family attended the FSHD Patient Connect conference in Las Vegas in 2010. That’s when we realized that finding a cure for FSHD wasn’t going to happen without a lot of help from the patient community – including Canadians. Craig was also at this conference and together we decided to create a Canadian charity to help fund FSHD research.” Fast forward 12 years, as therapy development was getting real. “By 2022, the pipeline of therapies to cure FSHD was well in place – and growing”, Neil says. “Then the alarm bell went off. We found out that Canada is typically three years behind the rest of the world in getting access to new drugs. We couldn’t let that happen to our Canadian FSHD patients. So we reached out to the FSHD Society to develop a gameplan to speed up the approval process in Canada. That project was code-named مشروع الزئبق – and has now gone global.”
A driving force in speeding the development and delivery of therapies in any country is an active patient community. Neil partnered with the FSHD Society to expand the number of Canadian chapters and begin to grow the communities.
The Alberta Chapter was next to launch in 2023 by Karen Camarta and Jennie Cherniwchan (Camarta), Neil’s daughters, who also have FSHD. “We have had a great time watching our FSHD community grow; hearing each other’s stories, making friends, and realizing you’re not alone in this journey has truly been a gift”. The Alberta Chapter planned and hosted the first Canadian FSHD 360 Conference in March of 2024, co-hosted by the team at the University of Calgary (Dr. Lawrence Korngut), and sponsored by the FSHD Canada Foundation. Since then, both Ontario and BC have hosted 360 events in Toronto and Vancouver this past May.
Neil added, “Our patients and the families really enjoy and appreciate these FSHD 360 events – and we enjoy hosting them. We hope to host an FSHD 360 conference in Quebec next year.”
Cheryl Hooge & Priscilla also stepped up in early 2023 to lead the British Columbia Chapter. BC already had an active group of FSHDers, and Cheryl and her husband Terry have hosted 2 fundraising gala events (prior to the launch of the chapter in BC), in honor of Cheryl’s daughter, who was diagnosed with FSHD at the age of 16. Kristina is now 33 and lives in Toronto, working in a role that capitalizes on her communication skills and her passion for advocating and supporting disabled youth and other marginalized groups.
“Our chapter has several core members and as more and more find us, we hope to continue to support them through regular zoom calls and occasional in person events”, says Cheryl. “We are looking to grow our community but more importantly to engage the members and to eventually host a Walk & Roll somewhere in the Greater Vancouver Area.”
With these chapters leading the charge for families all across Canada, no one need travel their FSHD journey alone. “Canada is a big country”, Neil says. “And we have FSHD patients everywhere. Our goal is to ultimately have an FSHD chapter in every province and territory.”
If you would like to learn more about starting a chapter in your area, please reach out to Beth Johnston at the FSHD Society (Beth.Johnston@fshdsociety.org) to learn more.
Upcoming Walk & Roll to Cure FSHD events in Canada:
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