Gearing up for the summer this year, Andrew Sedmihradsky, the global mobility coordinator at UTM’s International Education Centre, and his son Max will bike from Hamilton to Ottawa for the fourth year of Max’s Big Ride. Funds raised from the ride will go towards raising awareness about Duchenne muscular dystrophy and research towards finding a cure. Similar to last year, this year Max’s Big Ride will be accompanied by an Ice Cream Ride, and Max’s Big Climb. All funds raised will go through Jesse’s Journey to support research carried by Patrick Gunning’s lab at UTM, as well as research at the University of Ottawa.
“On our first day, riding from Hamilton to Ottawa, we’ll stop by at UTM,” says Sedmihradsky to The Medium, “I’ve actually got a meeting just after this with colleagues in advancement who are going to help with our arrival to campus. We missed that last year because of the date we had to be in Ottawa, so we stopped by campus on a Sunday, and obviously nothing is happening at UTM on a Sunday.”
The whole ride is due to finish on Father’s Day in Ottawa on Parliament Hill, which Sedmihradsky says is “sort of symbolic.” He continues, “The first time we did Max’s Big Ride, we started on Father’s Day, but that was just by accident, and the press was like ‘It was a great idea starting it on Father’s Day,’ and that is when I figured out it was Father’s Day.”
The Ice Cream Ride will also be returning for the second time, but as Sedmihradsky says, “This year we are adding a second distance. Last year it was just one, about 25 kilometre route, but to get more families out and people with little kids, we’ve added something that just goes along the waterfront trail in Hamilton and it’s completely car-free; it’s on a paved bicycle path.” With the path being around a six kilometre round-trip, he says, based on the same idea as last year, “People will get an ice cream at the halfway point, then an ice cream at the finish, and also a lunch from a bakery in Hamilton that’s quite popular called Cake and Loaf, so that’s on Saturday, June 23.”
With Max’s Big Climb scheduled to take place on Saturday July 21st, Sedmihradsky says, “We might change up the format a little bit this year. The main idea of this event will be to get people out each year. We might get the ride to be a part of a youth cup series, so we can get cyclists ranging in age from about seven to 16 and making it about a one or two-day event. And then, we’ll have the hill-climb.” He continues to say, “I think it will be great to cultivate youth cycling, and hopefully some parents can come out and be part of the race as well.” Sedmihradksy says, “So, all these things are happening, and I only got my permit for them last week, so I haven’t really started any promotions. And so, we’re re-doing the posters again for this year and probably the next week we’ll start promoting.”
In reference to the Max’s Big Ride Community Innovation Project, run in collaboration with the Centre for Student Engagement (CSE), Sedmihradsky says, “Yasir [Raouf] is one of the students who works in Patrick Gunning’s lab and he’s the one who has received Max’s Big Fellowship for this year, so he is involved on a daily basis with the research. And he was also hired by CSE to head up Max’s Big Ride Community Innovation Project, and they’ve been working over the year and will be culminating in an activity that’s occurring over exam jam.” The activities, according to Sedmihradsky, will be an opportunity to raise awareness about Duchenne muscular dystrophy and have students participate. The global mobility coordinator adds, “So Yasir and his group are finalizing some details on how it’s going to happen, but Max always comes to Exam Jam. It’s the highlight of his year I think. Like last year in the fall, I brought him to exam jam and he loved it.” He continues to say, “And the next day, [he] pretended he was sick at his regular school because he wanted to come back here.” As Sedmihradsky shares, Max “eventually disclosed that he’s not really sick and just wants to go to daddy’s work, and I had to explain that’s not really how it is every day at my work. We’re not sitting around playing Lego and making buttons—and he had spent the whole day at the Lego table [at Exam Jam], and he made about a dozen buttons, so he absolutely loved it.” As Sedmihradsky says, “But super excited to have them helping, and it’s great that these students supported us in this way.”
He also highlights that when the UTM Undergraduate Commerce Society (UCS), UTM CPA Ontario, and the UTM Archery Club organized “Aim for Max” in January, “They got their members to come out and they got a chance to try archery, and they paid a small fee to do archery. All the money that was collected went to Max’s Big Ride.” As Sedmihradsky says, the student groups collected over $350 which was donated to Jesse’s Journey.Not too long ago, at UCS’s Show Me the Green case competition, Sedmihradsky says, “They gave out bags to all the delegates that had come and they asked if we wanted to put in some Max’s Big Ride brochures, and we printed out some fliers and stuff and that was awesome.”
Sedmihradsky notes, “This year it’s been really cool too, because I spend a lot of time emailing […] getting people to kind of give us some help. But this year it has been really cool that UTM UCS approached me.”
He also highlights the print shop at UTM and their sponsorship. “So, we get some free printing through them, the office. I had been printing through them probably since the beginning, and they approached me this year and said they had asked their bosses and their bosses had agreed to donate some money. [. . .] It’s really pretty awesome to see. [. . .] It’s rare that someone comes to me without being asked. And when asked, people are often very helpful and willing to help. It’s great to have people reaching out, it feels good.”
In response to how it feels to have seen Max’s Big Ride grow over the years, and seeing Max’s almost-celebrity status at UTM, Sedmihdrasky says, “I don’t know, it’s certainly a long road. I mean when this first started I felt kind of stupid saying I’m going to try and find a cure for Duchenne. Certainly, I’m not claiming I’m doing this by myself, but even stepping into this area, and trying to do this, because there are already so many smart scientists and people doing this and big groups doing this, it felt dumb to think that I could make a difference and it was kind of embarrassing. But you know now Patrick Gunning is working on Duchenne because of some questions that I asked that I really had no business asking,” Sedmihdrasky laughs, further emphasizing, “So it’s kind of amazing how it has happened.”
According to Sedmihradsky though, they are not at the end goal, which is to find a cure, but as he says, “it keeps me busy and it has other benefits […] it’s also a cathartic experience for me, to keep me not thinking about the bad parts of the disease.” In terms of how Max feels, Sedmihradsky says “Every year at the end of Max’s Big Ride, I ask him ‘Do you want to do it again?’ and he said I want to do it 10 or 11 more times, so I’m like okay good.”
According to Sedmihradsky, Max’s little sister Isla, also likes it, and Max “seems to enjoy it.” He continues, “[Max] definitely loves the ride and in the seven or eight days, however long the ride is, he’s a celebrity and everybody gives him presents wherever he goes. [. . .] After the ride when he goes somewhere, and people aren’t giving him presents anymore, [. . .] I have to tell him, ‘Max, that’s not how it is.’” Sedmihradsky continues to say, “He seems to be taking it in stride, and I kind of sometimes wrestle with—am I doing the right thing? And when Max is 16, will he be happy that I splashed his face over all these things? But I honestly don’t see another way of doing it, and hopefully he’ll understand the reasons for doing it, and I honestly don’t know what he thinks, but he’s never had anything bad to say about it. [. . .] We try and answer all his questions about Duchenne as honestly as we can, so as long as he’s happy to do it.”
In reference to research, Semihdrasky says, “We raised some money this summer for Max’s Big Fellowship, and a funny story about Max. I told Max that it was on Halloween that we were going to do the cheque presentation to Patrick Gunning and to UTM, and I didn’t want to bring Max because he would miss out on his Halloween stuff. And any other day I would’ve brought him but I wanted to let him be a kid and I didn’t want to take him away because of Max’s Big Ride stuff.” As Sedmihradsky was telling Max about Max’s Big Fellowship, he says, “[Max] wasn’t really listening to me, but I just like telling him. So, I got back home from work, and he asks me, ‘So how is Max’s Big Boat?’ And I was like ‘What?’ and he says, ‘You know, the thing you were doing, with Max’s Big Boat.’ And he thought that we were launching this large boat in his honour, so if he came he would be disappointed to see a cheque. It was a super-sized cheque, but not a boat.” Sedmihradsky adds, “I thought it was funny to see his take on this, and I posted it on Facebook. [. . .] People were like ‘You should do Max’s Big Boat Trip,” but I’m not a sailor.”
In terms of the research, Sedmihradsky says they are trying to iron out details for the agreement, “Because I fund money to Jesse’s Journey, and they give it to the Gunning group lab, and we’re just hammering out the agreement guide, and basically I am going to try and raise $39,000 each year for the next two years. [. . .] That money would be to hire human capital, to either get more Ph.D. students working in the lab or to fund one student for longer.” Additionally, Jesse’s Journey will donate $300,000 in total, distributed as $100,000 per year, from which they are working with a researcher in University of Ottawa.
He also says, “You know, originally, Patrick’s molecules are designed for cancer, but he thought maybe they could benefit here too. [. . .] We’re really lucky that we are benefitting from 10 years of previous research, so it’s super exciting.”
Sedmihradsky also reflects, “Sometimes I pinch myself; it’s so serendipitous that you know we work in the same building and it speaks also about UTM, because perhaps if I worked somewhere else, I wouldn’t have the possibility of this connection.”
On March 21st, Sedmihradsky had a meeting with a brewery in Hamilton, “A local brewery called Grain and Grit, and they’ve agreed to do a Max’s Big Ride Beer this year, so it’s a charity beer and more prevalent in the states. [. . .] I originally found about them for things like ‘Save the Ocean’ where you buy a beer for a $1 and the money goes towards the charity.” Sedmihradsky then wrote to all these breweries and says, “[I] had a meeting with them and they want to do it. [. . .] It’ll probably have Max in the name, something like Max’s Big Beer, and they’ve asked me for a list of his favourite flavours. [. . .] Obviously he won’t be drinking it but it’ll be influenced by him in some way […]. And this will be more about raising awareness, because a whole group of people who don’t know about Max’s Big Ride may drop by the brewery and pick up a six-pack and become aware of it […]. So I’m super excited about that and had some beers to celebrate after,” he laughs.
Max and Andrew will start the ride on June 11 in Hamilton and finish 600 kilometres later in Ottawa on Father’s Day.
