How one father's advocacy sparked hope and a path to translational research

When Andrew Sedmihradsky’s two-year-old son Max was diagnosed with Duchenne muscular dystrophy, a rare and progressive muscle-wasting disease, he was living with his family in Australia, working in international education. The diagnosis was devastating. But instead of retreating into despair, Andrew decided to act.

“I couldn’t just sit there and wait for this disease to take my son. So I decided to do something,” he recalls.

He did. In 2015, after returning to Canada, the Sedmihradskys launched Max’s Big Ride, a cycling fundraiser from Hamilton to Ottawa, with Max sitting in a Dutch cargo bike. The idea was simple: raise awareness and funds for better outcomes in Duchenne, and draw attention to this disease in Ontario and Ottawa, where health policy decisions are made.

Over the next decade, the initiative evolved into an annual event and eventually a not-for-profit organization. It raised significant funds for research, including that done at the University of Toronto.

What began as a desperate attempt to take control of an uncontrollable situation became a movement - and eventually led Andrew to the Translational Research Program (TRP) at the University of Toronto’s Temerty Faculty of Medicine.

“I’d taken Max’s Big Ride as far as I could on trial and error,” Andrew explains. “I wanted to learn the skills to do it better, to expand my networks and take a more strategic approach.”

He came across a flyer for the TRP at a graduate program fair at The University of Toronto Mississauga campus (UTM), where he works as administrative staff, and instantly knew it was the right fit. As a mature student juggling full-time work and family responsibilities (including parenting two children, one with complex medical needs), Andrew says the TRP’s flexible delivery and applied curriculum made it possible.

“It’s the only time in my life I’ve ever been motivated in school and really applied myself,” he says. “I was working on things I cared about - grant writing, advocacy, patient engagement - right there in class. It never felt like work. It was so powerful. Either I was working directly on something I wanted to do, or it was a very clear pathway to me about how I could apply it – I have never been in a program like that”.

He credits the TRP with helping him bring clarity to his goals. “Before, I was like a shotgun - just spraying ideas everywhere. The TRP helped me refine my thinking and speak the language of healthcare professionals and researchers. That gave me more confidence and influence in my advocacy.”

While Andrew downplays his technical knowledge “I’m an expert in bothering people”, his advocacy led to real research impact. Thanks to connections made through his role at UTM, Max’s Big Ride began funding research at the Gunning Group Lab, exploring new molecular treatments for Duchenne. That partnership birthed Max’s Big Fellowship, a PhD studentship supporting research on muscle-targeting compounds. Publications followed.

“There was nothing happening on Duchenne in that lab before, now there is. That’s meaningful.”

Andrew’s Capstone research project in the TRP tackled a personal pain point: how to help families source shoes that fit over the ankle-foot orthotics (AFOs) used by kids like Max. He and his group developed a patient resource and are working to implement it at Hamilton’s Ron Joyce Children’s Health Centre.

More recently, he helped launch a project with the U of T-affiliated PRIME Precision Medicine initiative, exploring how AI can be used to accelerate the discovery of connections between existing treatments and rare diseases like Duchenne.

Andrew emphasizes that the TRP is uniquely suited to people who don’t fit the “traditional” innovation profile. “I’m not starting a business. I’m just trying to help my son. A lot of innovation programs are built around tech or products. The TRP supports people doing all kinds of healthcare innovation - including advocacy and systems change.”

Though he was much older than some of his peers, Andrew never felt out of place. “The sense of community was amazing. I learned as much from my classmates, doctors, PhD students, global professionals, as I did from my instructors.”

He calls the program “a no-brainer” for anyone working to make healthcare better - no matter their background.

Today, Andrew is back in the TRP, this time as an instructor. He proposed, and now teaches, a new course on meaningful patient engagement, helping current students think critically about how to involve patients and caregivers in their projects.

“What I learned through TRP now helps me teach others how to bring patients to the table in research, care, and innovation.”

After 10 years, Max’s Big Ride continues in a new format, drawing participants and supporters across Canada and around the world. “We might not be riding to Ottawa anymore, but we’re still moving forward,” Andrew says. “And thanks to the TRP, I know how to make that journey count.”

Find out more about Max's Big Ride

Watch a video all about Andrew's work with the Gunning Lab (YouTube)

Donate to the Duchenne Muscular Dystrophy Research Fund at the University of Toronto Mississauga