This summer, Andrew Sedmihradsky, the global mobility coordinator at UTM’s International Education Centre, and his seven-year-old son Max, cycled 600 kilometers from Hamilton to Ottawa for the fourth year of Max’s Big Ride. They began their seven day journey on June 11, and reached their destination of Parliament Hill on Sunday June 17, Father’s Day. They created their initiative, Max’s Big Ride, to increase awareness about Duchenne muscular dystrophy (DMD) and raise money to support researchers in finding a cure.

When Max was diagnosed with DMD, a fatal disease characterized by muscle degeneration and weakness, Sedmihradsky decided he needed to do something to educate the community while fundraising for research. He took his original plan to bike with his son across Canada and modified it to a ride between Hamilton, where the Sedmihradsky family lives, and Ottawa. For Sedmihradsky, Ottawa, the final stop on their route, is a “symbolic place because there are a lot of decisions around health care made there.”

For the past four years, Sedmihradsky pedalled his son Max in a cargo bike, a special bike with a large wooden box attached to the front. Equipped with padded seats and seatbelts, Max and his two-year-old sister Isla, a new addition to the annual cycling trip, ride in what Sedmihradsky refers to as “the best seat in the house.”

            All of the funds raised during Max’s Big Ride go towards supporting Jesse’s Journey, a charity based in London, Ontario, and the research conducted by Patrick Gunning’s lab, a professor in the department of chemical and physical sciences at UTM. From the initiative’s first three years alone, the Sedmihradsky family has raised over $140,000.

“We chose [Jesse’s Journey] because they’re the only charity in Canada that exclusively funds Duchenne research and research is where we feel the hope lies. We want to help find a cure,” explains Sedmihradsky.

Max’s Big Ride met Prime Minister Justin Trudeau

After an administrative meeting run by Principal Krull, where he encouraged staff to share their stories, Sedmihradsky crafted an email detailing Max’s Big Ride, and sent it to Principal Krull, who later forwarded it to Patrick Gunning.

“Patrick Gunning is doing some amazing research around brain cancer and he has molecules that he feels may have a significant impact on [Duchenne muscular dystrophy]. I told him I was interested, so we met at his office. [Gunning] was interested too, but cautioned me a bit because he had no idea if his molecules could have any impact on Duchenne. We set up an agreement where the money I raise in the summer goes towards funding Ph.D. students in Gunning’s lab,” Sedmihradsky says. “Last year we raised $36,000. This year our goal was $39,000, we’re not there yet but we’re not done.”

In addition, Jesse’s Journey will provide Patrick Gunning’s lab with $300,000, divided into $100,000 yearly installments.

Similar to last year, an Ice Cream Ride and Max’s Big Climb accompanied Max’s Big Ride. Held on Saturday June 23, the Ice Cream Ride featured two separate routes, a family-friendly, car-free 6 km route around Hamilton’s waterfront trail and a 29 km route that follows bike paths and bike-friendly roads. During the event, participants were provided with an ice cream at the halfway point, an ice cream at the finish, and lunch from a local Hamilton bakery called Cake and Loaf.

When asked about the origin of this event, Sedmihradsky laughs and recalls his initial attempt to convince Max about his cycling idea. “The original way I convinced Max, at age 4, to do this was I told him we were going to ride our bike from ice cream shop to ice cream shop. He was all for that idea, and everyday we’d have an ice cream. I thought if it worked for him, maybe it’d work for other people.”

Max’s Big Climb, held on Saturday July 21, allowed cyclists to tackle Sydenham Hill, a 112-metre high, steep hill, while raising money for Duchenne research.

Unlike last year, Max and his father managed to add some new events to their itinerary, including a meeting with Prime Minster Justin Trudeau, an Arkells concert, and a trip to a local Hamilton brewery to craft a signature beer.

The day after reaching Parliament Hill, Max and his family were invited for a photo opportunity with Prime Minister Justin Trudeau, a task that Sedmihradsky had been hoping to achieve for three years.

Only a few days later, on the same day as the Ice Cream Ride, Max Kerman, the lead singer of the Hamilton-formed rock band Arkells, invited Max and his family to their concert at Hamilton’s Tim Horton’s Field. After reaching out to the band and claiming that “Max’s have got to stick together,” Sedmihradsky laughs as he remembers his son enjoying the night.

“We got to go for sound check and we met the band. Max got some drum sticks. We went to the concert and had an awesome time. Max was up way past his bed time and he had this little towel that he was waving above his head. Isla doesn’t know she missed the concert, but she’ll probably be upset when she realizes later in life,” he recalls.

To conclude their eventful summer, Max’s Big Ride collaborated with a local Hamilton brewery called Grain and Grit to create Max’s Big Beer, a beer where a portion of the proceeds goes towards supporting Duchenne. Quickly, Lindsey and Joe, the owners of the brewery, asked for Max’s favourite flavours and Sedmihradsky supplied them with a list including peach, vanilla, olives, and pickles. They then created a milkshake India Pale Ale with peach and vanilla, and allowed Max to participate in the brewing process by completing tasks such as pouring in the peach puree. At the beer’s launch, they donated all the money collected from draught sales and 50 cents from every can sold.

“It was more about raising awareness, I wasn’t trying to make a ton of money. I thought, ‘Okay, there’s a bunch of people who drink beer that don’t know about [Duchenne] so let’s try to capitalize on that,” Sedmihradsky says.

When asked if there will be a fifth Max’s Big Ride next summer, Sedmihradsky claims that he “has no plans on quitting anytime soon.”

“In the beginning, I was embarrassed to even say we’re trying to find a cure for Duchenne, there’s tons of brilliant minds and people working on this. So I felt stupid telling people this is what I’m trying to do, and we haven’t done that yet, we’re only a tiny piece of the puzzle. I don’t think we’re finished,” he says. “I’m very grateful for the people that have come out and supported us along the way, whether it’s media who is willing to cover us or people who come out of the woodwork with donations or share our story. I’m just amazed every year that something unbelievable happens.”