A dad, a son, a bicycle and maybe a cure
On Father’s Day, Andrew Sedmihradsky pedalled a Dutch-made cargo bike onto Parliament Hill, ending his trek to raise money for Duchenne muscular dystrophy research. In the box at the front of the bike: his seven-year-old son, Max, who has the incurable muscle-wasting disease known as MDM.
Sedmihradsky, a University of Ottawa graduate who now lives in Hamilton, has been making the 600-kilometre ride for four years. His goal is to help find a cure for a disease that robs patients of mobility and, eventually, their lives. He has raised about $160,000. “I not saying we’re going to cure it. But maybe we’ll have a bit of an impact,” he said. “I decided that we would fight it. And here we are.”
DMD is a genetic condition. People who have it, almost always male, are unable to produce dystrophin, a protein that protects muscle cells. Even with the best medical care, most patients don’t survive past their early 30s.
For Sedmihradsky, the ride started out as a cathartic exercise, to put his energy into doing something. But Max’s Big Ride has branched out in many different directions.
There’s the Ice Cream Ride, a family-friendly event that rewards participants with frozen treats. There’s Max’s Big Climb up a hill in Dundas, near Hamilton. There’s Max’s Big Beer, produced by Hamilton’s Grain & Grit brewery.
“It has hints of Max’s favourite flavours: peach and vanilla milkshake,” says Max’s mother, Kerri.
Then there’s Max’s Big Fellowship. Sedmihradsky bumped into superstar researcher Patrick Gunning at the University of Toronto, where he works. Gunning’s research focuses on the development of small molecule architectures to reverse a protein’s aberrant role. Could it apply to DMD? Sedmihradsky asked.
Gunning was skeptical. He works in oncology, but asked a graduate student to look into it. This year Sedmihradsky set a goal of raising $39,000 a year over the next three years to help fund PhD students in Gunning ’s lab.
Meanwhile, Max has been taking a new drug and is in a clinical trial. “It’s helping, but it’s not a cure,” said Sedmihradsky.
“We are running out of time. All of the boys start to lose mobility at 12 or 13,” he said. “There will be a point where the disease catches up with him.”
This year’s ride took the pair from Hamilton to Toronto to Kingston to Ottawa.
“It’s a long road and I know what’s ahead of us,” he said. “But I am optimistic.”