Bringing down ‘Canada’s disease’
Why this Toronto man is on a mission to halt multiple sclerosis.
Chris Bournakas and his brother were young kids when their parents pulled up stakes in their native Greece to move to Toronto. Their aunt and uncle came too, and like many new immigrants, they lived under one roof to make ends meet.
Even when the two families bought their own homes, they remained just a 10-minute drive apart and stayed tightly knit. Chris’s cousins – Jayne, Maria and Julie – were like sisters to him.
“Our families were very close. We were the ones in Toronto,” says Chris. “Everyone else was in Greece.”
So when Maria was diagnosed with multiple sclerosis during her last year of high school, the news hit both families hard.
“It seemed like she went from coping to bed-ridden. There was no middle ground really,” recalls Chris.
At the time, Chris was only vaguely aware of what it meant to have MS, but he quickly learned how debilitating it can be, and that Canada has the highest incidence in the world. One in 340 of us has it, and three more are diagnosed every day.
As Chris discovered, MS is an autoimmune disease that affects nerve cells in the brain, spinal cord and eyes. It attacks the nerve’s protective insulating cover, a fatty material called myelin. When myelin is damaged or inflamed, nerve impulses become distorted or interrupted.
What triggers MS is still a mystery and the symptoms are different for everyone. Vision problems can be a symptom, but there are others. Legs might feel weak, wobbly or unbearably stiff. Exhaustion is common. Some people say their brain feels foggy or fuzzy. Most people with MS talk about pins and needles in their limbs. Some patients might lose their ability to walk, while others might have trouble with memory and attention.
In Maria’s case, the disease was aggressive and brutal. She died in 2013, at the age of 38.
As he worked through his grief, Chris decided he had to do something to help others with MS. So he led a bike-a-thon to raise money for MS research and treatment, calling it “Maria’s Spartans.” It felt good to work for a cause he believed in and it helped him deal with the hole Maria’s death had left in his life.
In November 2017, St. Michael’s announced it was launching a campaign to build the BARLO MS Centre, a world-leading hub for MS treatment and research. “When I heard that, it seemed like a natural fit,” says Chris. “I could do something for both my cousins.”
In fact, Chris was one of the BARLO MS Centre’s first donors. He has also taken an active interest in the project, touring the Peter Gilgan Patient Care Tower where the centre will open next year, and participating in fundraisers.
“I want to make it easier for people with MS, especially knowing how Maria struggled with the disease,” he says.
“The fact we will finally have a centre like this in Toronto is a big deal. It’s spectacular to be part of that. It feels great.”
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