For the second year in a row, Andrew Sedmihradsky (the global mobility coordinator at UTM’s International Education Centre) and his five-year-old son, Max, biked a 600 km route from Ottawa to Hamilton together, in order to raise awareness about Duchenne muscular dystrophy and fundraise towards finding a cure.
Affecting one in 3,500 boys, DMD is a fatal disease that causes muscle degeneration. Those with the disease generally have an average life expectancy of about 25 years.
Sedmihradsky’s son Max suffers from DMD—but that hasn’t stopped him from taking the front seat on his father’s bike and leading the way on their annual ride.
Similar to last year, Max’s Big Ride started in Ottawa at Parliament Hill, on Father’s Day. However, this year, the duo pedaled along the Waterfront Trail and completed the journey in seven days, instead of 11.
“This year, there was a lot more time spent on the bike,” says Sedmihradsky. “The weather made it challenging. We had four days in a row where it was close to 40 C […] But there’s certainly nothing to complain about—I hope it doesn’t come across that way. It was a very enjoyable thing and I look forward to doing it again next year.”
What was also different this year was the recognition that Max’s Big Ride received—particularly the acknowledgement from Prime Minister Justin Trudeau.
This acknowledgement was made possible through Karina Gould, the MP for Burlington.
Following the bike launch at the Urkai store in Burlington, Gould approached Sedmihradsky and offered the possibility of having a reception at Parliament Hill with 40 invited MPs before Max’s Big Ride officially kicked off. He agreed immediately.
“I was really impressed. We didn’t even ask her to do anything. Normally, I was bothering people to do stuff!” he says.
Unfortunately, Parliament unexpectedly broke up a few days before Max’s Big Ride.
“I was so involved in planning Max’s Big Ride that I didn’t even know that Parliament had broken up,” says Sedmihradsky.
However, a smaller meeting still took place at Parliament Hill, where Max’s Big Ride received certificates signed by various MPs and a statement from the prime minister.
“I looked at it about five times before I even read it,” says Sedmihradsky. “I kept looking at the signature, opening and closing it up. It wasn’t even a letter—it was a speech […] It was really [written] to Max—it was cool. But it was a speech, and not a letter. So I was thinking, ‘Oh my God. He was supposed to be there to mark the beginning of the ride.’
“I was just thinking: is this really happening? It’s very surreal to think that we made this website in my basement, and then 18 months later, the leader of Canada knew about it […] It shows that we’re doing something right.”
This year, funds raised through sponsors and donations went towards two causes: funding DMD research (via Jesse’s Journey) and the cost of the drug Translarna.
“Max gained access to a drug called Translarna, which has not been approved here in Canada,” says Sedmihradsky.
While Translarna is not a cure for DMD, it does address the underlying cause of the disease. When Max gained access to the drug, it made the Sedmihradskys the fifth family in Canada to do so.
“We had to strike a deal with the drug company. The drug is worth about $300,000 a year, and we needed to pay a [proportion of that], which is confidential, in order to keep getting that drug.”
Through a GoFundMe page, sufficient money was raised to secure the drug for Max by April 2016. Then all efforts were directed towards raising money for Jesse’s Journey (a Canadian charity dedicated to funding research for DMD around the world).
Over the last two years, Max’s Big Ride has raised over $100,000.
Max’s Big Ride ended on Canada Day. However, that was not the end of their biking adventures for the summer, as the Sedmihradskys went on to hold Max’s Big Climb a mere three weeks later at Sydenham Hill in Dundas, Ontario.
Sydenham Hill is an iconic location. The 143 m-high hill is particularly well-known for serving as a training ground for Clara Hughes, the six-time Canadian Olympic medalist in cyclic and speed skating. In fact, there is currently a plaque dedicated to her (“Clara’s Climb”) on Sydenham Hill
“[The idea] just struck me one day. I was in Toronto, celebrating my birthday and our wedding anniversary […] I felt like this was a good idea [that] has some potential,” says Sedmihradsky. “Max’s Big Ride appeals to people who want to help out with the charity and it has to be something they can relate to […] whereas the Climb was a competitive event where we ask cyclists to come out and race.”
Max’s Big Climb was set to occur on a one km course along Sydenham Hill. Participants were divided into two categories (men and women), then subdivided into seven age categories (14-15, 16-19, 20-29, 30-39, 40-49, 50-59, and 60+). They were then subdivided once more by licensing (OCA-licensed racers and non-licensed riders). Initially, for each subcategory, each rider was allowed to ride twice. Using their fastest times, riders were ranked according to their age and gender groups. The fastest rider in each category was recognized.
Additionally, the fastest four men and women competed in a Semi-Heat race. The resulting winners (two men and two women) then participated in a final race, where winners of each category would be crowned ‘King’ and ‘Queen of the Mountain’ respectively.
Max’s Big Climb was held on Saturday, July 23, where a total of 55 cyclists participated and raised over $4,000 for DMD research through pledges and registration fees.
“We had a guy go up [the hill] on a unicycle—which was crazy. He wasn’t the last person [in the race] so he did quite well,” says Sedmihradsky. “He was also riding the unicycle down the hill, which was insane.”
Sedmihradsky is keen on repeating Max’s Big Ride and Climb next year—especially in time for Canada’s 150th anniversary. However, he now wants to focus more on raising awareness about DMD.
“The money that we raised is great and very much appreciated, but it’s a drop in the bucket in terms of the money that is required to run research labs and bring these changes about,” says Sedmihradsky.
“I felt the need to do something but it’s also [been a] kind of cathartic experience. You can’t just sit and wait for this to happen—you’ve got to fight it. Well, we’re fighting it, but we’re not fighting it enough. So I keep thinking that we’ve got to do more.”
