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/
Upcoming Events
Ontario FSHD 360
Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA Burnhamthorpe Community Centre 1500 Gulleden Dr, Mississauga, ON, CanadaOntario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA... Read More »
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.
