Welcome to the Ontario 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.
The Ontario chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through.
We provide support, share local resources, and keep you informed on the latest research and care. Whether you’re newly diagnosed or have been living with FSHD for years, we’re here to support you, every step of the way.
Join your local chapter and learn how we can support you on your FSHD journey.
Meet the Team
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Carrie Wilkinson
Carrie lives on a hobby farm just north of Toronto with her husband, John, and their two children. Their daughter was diagnosed with FSHD at the age of six, and shortly after, John was also diagnosed with the condition. This personal experience has inspired her to be a strong advocate for those affected by FSHD.
As an Occupational Therapist specializing in neuro rehabilitation, Carrie is dedicated to helping her patients reach their goals. She is equally passionate about building a collective voice for the FSHD community in Ontario. While Ontario covers a large area, Carrie believes the community will come together to support one another, share resources, and work toward a future with treatments for FSHD.
Contact Carrie directly or visit the Ontario Facebook page.
Volunteer with the Chapter
While Carrie is powering the path forward, we’re always looking for passionate individuals to help with planning events, spreading the word, and working on other projects. Your involvement will make a big difference in growing the chapter and supporting those affected by FSHD.
Contact Beth Johnston, Chief of Volunteer Leadership to learn how you can make an impact and get involved.