For the sixth consecutive year and despite the unforeseen conditions, Max’s Big Ride returns with its inspiring mission to raise awareness on Duchenne Muscular Dystrophy (DMD). Andrew Sedmihradsky, the global mobility coordinator at UTM’s International Education Center, whose nine-year-old son Max suffers from this genetic disorder characterized by progressive muscle weakness and degradation, began the 600 km cargo bike ride from Hamilton to Ottawa in 2015. Since then, his initiative has raised over $200,000 towards research with no plans to stop anytime soon.
Duchenne Muscular Dystrophy, the most common muscle disease for children, affects about one in 3,500 boys. Those affected with DMD struggle to produce the muscle protein dystrophin. As muscle cells weaken, they break down, and individuals with DMD experience frequent falls, weakness in the legs and hips, and eventually weakness in heart and lung muscles. Signs of feebleness begin to appear when boys are between three and five years of age.
Since Max’s diagnosis at the age of two, Sedmihradsky decided that although unsure how, he was “going to fight” this disorder. Sedmihradsky combined his passion and favorite family activity of riding bikes with his dedication and devotion to find a cure for Duchenne Muscular Dystrophy. “It was something that Max enjoyed as a little kid – he would sit on the back of my bike in a carrier and just loved being out on the bike. And so, we settled on the idea of a ride across Canada and then one from our home in Hamilton to Ottawa.”
The usual ride would bring them to their final destination of Parliament Hill. This was an intentional aspect of the initiative as Ottawa is where important decisions are made on rare diseases, drug approvals, and funding.
This year, due to the global pandemic, Max’s Big Ride At Home occurred from June 1 to June 7. All 600 km were still traveled, but on a stationary bike from the safety of Sedmihradsky’s front yard and via a virtual cycling app called Zwift. Max and his younger sister Isla accompanied Sedmihradsky for the whole ride.
“We used the same cargo bike but we hooked it up to a bicycle trainer,” says Sedmihradsky of the changes. “It’s just basically a contraption that holds the back wheel of the bike and it’s attached to a fly-wheel, which is then attached to my laptop and syncs up to Zwift, which tens of thousands of people use around the world for virtual cycling.” In a novel way, Andrew was able to interact with his community with this set up. Supporters, family, and friends came by his front yard on his daily rides to raise awareness and support the initiative. Seeing the community support firsthand kept Max’s Big Ride going amid these challenging times.
Although some of Max’s Big Ride’s partner initiatives such as the Ice Cream and Donut Ride were not able to occur this year, Jacob, a student at the University of Guelph, approached Sedmihradsky with an Everesting challenge to show his support and raise awareness. This initiative had Jacob continuously riding up a hill on Sydenham Road in Dundas until he had ridden the equivalent height of Mouth Everest, 8848 metres. Jacob rode the hill 85 times. Of Jacob’s commitment and initiative, Sedmihradsky says, “To watch him do that was so inspiring and was pretty incredible.”
All money raised through Max’s Big Ride goes directly to the Gunning Group Lab at the University of Toronto Mississauga. The Gunning Team, led by Patrick Gunning, a UTM chemistry professor, has already shown promising results in creating the chemical compounds capable of fighting DMD. Max’s Big Fellowship has also raised money to sponsor a Ph.D. student to work on finding a cure for DMD in Dr. Gunning’s Lab using molecules previously synthesized in the lab’s 12 years of cancer research.
Sedmihradsky says, “Whenever I talk to Patrick, I think I understand one in every three words but he looks excited and animated and I take that to be good news. He just gave us a report at the beginning of the summer, written in layman’s terms so we could use it as part of our promotional efforts.”
This collaboration between Max’s Big Ride and the Gunning Group Lab truly points to UTM’s strong community. Having these also connections brings hope to Sedmihradsky’s home and is truly serendipitous. “It’s amazing to think that the building that I work in, the Davis building, houses potentially the cure to this disease that my son is affected with,” says Sedmihradsky. “It really makes me appreciate the type of community that UTM is, I don’t feel alone at UTM. It’s really cool.”
While Sedmihradsky continues to garner awareness for DMD and fundraise for a cure, he also hopes to make connections with individuals willing to partner with the Gunning lab and advance what is being done. Sedmihradsky adds, “I just found out that another professor, Professor Bryan Stewart at UTM, a biology professor, has also just started some work on DMD, which is really exciting as there are now two labs working on DMD at UTM.”
“COVID-19 has affected everybody and I think in some ways, we live with some of the things that are scary about COVID-19. A fatal disease being on your doorstep. [But] when you look back on this summer, there are a lot of cool things that happened and maybe next summer the physical ride to Ottawa isn’t necessarily what we’re thinking. I think there are ways to have a virtual ride that you can involve people around the world in.”
As the world moves towards this era of digital connectivity, Max’s Big Ride may do the same with future initiatives, allowing greater exposure and participation.
“The biggest thing was that I just didn’t want to give up. In the face of this disease, I didn’t want to say, ‘well we can’t do it.’ That just doesn’t sit well with me.” Max’s Big Ride’s ability to adapt and persevere demonstrates the strength, the passion, and the dedication of the initiative. Sedmihradsky, like he has said annually since the founding of Max’s Big Ride, states, “I have no intention of stopping.” To donate to Max’s Big Ride visit www.maxsbigride.com, where 100 per cent of the contributions go to DMD research.