Welcome to the Ontario Chapter!
Thank you for visiting the Ontario, Canada Chapter!
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.
Contact our Chapter Director, Carrie Wilkinson directly, via email: OntarioChapter@fshdsociety.org, or by phone (905) 904-3721
Follow our local chapter on Facebook for news and notes about regional happenings. And please become an official member of our chapter to ensure you never miss a thing! Simply click 'sign up today' in the right sidebar.
Trial Participants Needed
The CHEO Research Institute and the Lochmuller Lab in Ottawa is seeking additional participants in Roche's REINFORCE clinical trial.
All details of the trial, including the inclusion and exclusion criteria can be found here: https://clinicaltrials.gov/study/NCT06222827?cond=FSHD&term=il%3D6&rank=1
Please contact the study coordinator, Jessica MacGregor (jemacgregor@ohri.ca, 613-798-5555 ext 19627) to be screened for this trial.
Here is a complete list of all of the clinical research being conducted by the Lochmuller Lab: https://lochmullerlab.org/research-area/clinical-research/
2024 Ontario Walk & Roll to Cure FSHD
Our 2024 annual Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated in helping raise awareness and funds toward reaching our goal of finding treatments and a cure for FSH Muscular Dystrophy. Fundraising will continue through the end of the year.
Learn more about the Walk & Roll to Cure FSHD here.
Stay tuned as we begin planning for our 2025 Walk & Roll to Cure FSHD!
The 2023 Ontario Walk & Roll to Cure FSHD!
Our 3RD ANNUAL Ontario Walk & Roll to Cure FSHD was a HUGE success! 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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CARRIE WILKINSON
Chapter Director
A bit about me. I live on a hobby farm north of Toronto with my husband, John, and our two children. Our daughter was diagnosed with FSHD at the age of six and John was diagnosed shortly after.
Professionally, I work as an Occupational Therapist in neuro rehabilitation. I pour my heart and soul into helping my patients achieve their goals.
I am equally dedicated to build a collective voice for FSHD in our province. Although Ontario encompasses a large geographical area, I know we will come together to support one another, share resources, and actively engage in finding a cure for FSHD.
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.
