Welcome to the British Columbia Chapter!
Thank you for visiting the British Columbia Chapter!
We are here to build a local community of patients, family, and friends, and to help them connect and advocate for themselves and each other. Our hope for the future is to find a cure - until then, we hope to bring greater awareness to the community and to help improve the quality of life for all those affected.
We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
To contact us directly, please email BCChapter@FSHDSociety.Org.
You can also sign up for our email, follow us on Facebook, or join in the conversation on our private Facebook group.
FSHD Canada Foundation has partnered with the FSHD Society to support and grow the FSHD communities across Canada with the shared goal to deliver treatments and a cure for FSHD Muscular Dystrophy.
2024 BC Walk & Roll to Cure FSHD
Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media and via email, and invite others to join you in getting us closer to a cure!
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support.
BC Chapter - 2024 World FSHD Day Celebration
It was SO lovely to see so many of you come out to celebrate World FSHD Day. We want to thank all the first timers for making the effort to join in the festivities. And of course, big thanks to all the familiar faces for attending. Wonderful to have such a great turn out!
We were treated to an update from Solve FSHD’s Executive Director, Eva Chin, on all the latest news in the areas of research and development. Exciting to hear about everything that is in the pipeline!
A big thanks to the FSHD Society and Solve FSHD for co-sponsoring this evening filled with food, fun, and fellowship!
The 2023 British Columbia Walk & Roll to Cure FSHD
Our 1ST ANNUAL British Columbia Walk & Roll to Cure FSHD Celebration was a huge success! Please stay tuned as we begin planning for our 2024 event.
Learn more about the Walk & Roll to Cure FSHD HERE.
Upcoming Events
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Priscilla Sharun
Chapter Co-Director
Hi! I am excited to join Cheryl and form the BC Chapter of the FSHD Society. We have been a small, but connected group of people in BC that Zoom and chat regularly to navigate this FSHD journey together.
I was diagnosed a few years ago after having my second child, and found the diagnosis hard to process. I found my way through and a large part was the support of the local community and resources. It is my hope that the community will continue to build, so no one needs to feel alone as they move through the disease.
I have two younger kids, a supportive husband and love spending time with my family outdoors. My disease progression has thankfully slowed, and I put lots of energy into my personal wellness including diet, supplements and exercise. I post my FSHD activities on my Instagram account FSHD Wellness.
Cheryl Hooge
Chapter Co-Director
Hello! My name is Cheryl, and I am so glad you found us! I am excited to co-direct the FSHD BC Chapter along with Priscilla!
My daughter was diagnosed with a spontaneous case of FSHD at the age of 16. I am always trying to learn as much as I can from literature and from other people living with the disease, on how to cope and to keep up with research.
The FSHD community is an awesome resource for patients, family members, caregivers and so many others. It is this value that I hold in community that has inspired me to build our community closer to home, and to be able to provide support and friendship with local FSH-ers. It is also a very crucial time because as treatments are being developed, we need clinical trial sites. We would love to have one here!
We are looking forward to meeting you!
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
