As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re sharing the story of John Fisher from Mississauga, Ontario.
When John Fisher was diagnosed with mitochondrial myopathy in 1982, which he notes he probably had since he was 6 or 7 years old, he was told he was one in a million.
The words stayed with John. They made him feel unique, but also isolated. His diagnosis was confirmed by Dr. Humphrey, and during that same period, Dr. Crawford, an ophthalmologist at SickKids, performed a surgery to attach his eyelids to his eyebrow muscles to keep them from drooping again. Later, John learned the condition he had was called chronic progressive external ophthalmoplegia (CPEO).
For years, he lived with that diagnosis on his own. “I’ve faced misunderstanding, ignorance, and even discrimination because of how I look and sound. Physically, I couldn’t always do things to the level I wanted, especially in sports or activities that required strength. But I learned to adapt, and I’ve done quite well,” says John. Living with mito for over 40 years has given John a deep understanding of its challenges, but also of the resilience it takes to live well in spite of them.
As time went on, John began to realize that his condition wasn’t as rare as he had once been told. Through his neurologist, Dr. Mark Tarnopolsky, and his own research, he started learning more about mitochondrial disease. That’s how John found MitoCanada, and, “how I connected with Kate Murray. It was her passion for this cause and her relentless advocacy for the MitoCommunity that inspired me to get involved,” shares John. He became a monthly donor because he wanted to help fuel that energy and make a difference wherever he could.
What stands out most to John about MitoCanada is the sense of community. When he was first diagnosed, there was no one to talk to. It took him 40 years to have a real conversation with someone else living with mito. John shares, “Now, thanks to MitoCanada, people have a place to turn, share experiences, find understanding, and know they’re not alone. That means a lot to me.”
John doesn’t give for his own benefit anymore. He gives for others, for the newly diagnosed, for families still searching for answers, and for those who might not have the strength or the voice to advocate for themselves. John finds comfort in knowing that his monthly gift helps MitoCanada do work to educate, to connect, and to push for better care and understanding.
John says, “I believe deeply in the human spirit and in the power of generosity. As Jack Welch, founder of my MBA program, used to say, we need ‘every brain in the game,’ and we all carry a ‘generosity gene’ that should be used more often.” To John, MitoCanada embodies both ideas. He believes it’s a place where compassion, knowledge, and action come together to make life better for everyone touched by mitochondrial disease.
Looking ahead, John hopes his support helps MitoCanada continue to grow, by expanding the patient registry, by building networks of specialists who truly understand mito, by ensuring mental health care is part of the conversation, and by showing that mito doesn’t only affect children, it affects people of all ages and walks of life.
John shares, “After 40 years, I no longer feel like one in a million. I’m one of many, part of a community that understands, supports, and believes in each other. That’s what MitoCanada has given me.”
We’re grateful to John for inspiring our MitoCommunity by sharing his journey and dedication to MitoCanada.
Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.
