British Columbia Chapter of FSHD Canada

Welcome to the British Columbia Chapter!

hank you for visiting the British Columbia, Canada Chapter of the FSHD Canada Foundation!

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 FSH Muscular Dystrophy.

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.

The goals of the Chapter Program here in British Columbia are to:

  • Increase awareness and educate families throughout Alberta.
  • Help build connections among patients, care givers, health care providers and others affected by this disease.
  • Harness the power of those shared connections allowing us all to gain strength, support and encouragement as we push forward in finding a cure for FSHD.
  • Last but not least let’s HAVE SOME FUN while we accomplish these goals!
Walk and Roll to Cure FSHD

Stay tuned for our First Annual British Columbia Walk & Roll to Cure FSHD!

 

Want to know more about the Walk & Roll? Learn More

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To contact us directly, please email: BCChapter@fshdsociety.org

Please join us! Simply fill out the form in the sidebar to become a member of the British Columbia chapter

Upcoming Events

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FSHD Radio: Community Profiles

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Tuesday, April 11th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD... Read More »

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Priscilla Sharun

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

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

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