This summer was the fifth successful year of an inspiring initiative that has fundraised over $190,000 towards the research and raising awareness of a fatal disease. The Medium sat down with Andrew Sedmihradsky, global mobility coordinator at UTM’s International Education Centre, father to bright eight-year old Max who has Duchenne muscular dystrophy, and president of Max’s Big Ride, to discuss the initiative.
Sedmihradsky explains that Duchenne muscular dystrophy, or DMD for short, is a “degenerative disease that affects mainly boys. [The disease] can be hereditary or, like in [Sedmihradsky’s family’s] case, be a result of a spontaneous mutation that occurs in the womb.” The disease is fatal and weakens the muscles. As Sedmihradsky states, it is a “pretty grim and prolonged situation” and causes loss of mobility and respiratory system issues among other health issues.
Max’s Big Ride was inspired by how Sedmihradsky and his family used to ride bikes in Australia. Sedmihradsky is also a passionate Tour de France fan and enjoyed riding his bike as a child.
The main event itself ran from June 3 to June 10 this year and involved three activities. There was the Big Ride in which Sedmihradsky biked with his son from Hamilton, where Sedmihradsky’s family lives, to Ottawa which is symbolic to Sedmihradsky because of the “decisions that can be made there in terms of healthcare.”
Another fun activity was the Ice-cream and Donut Ride which was inspired by how Sedmihradsky used to tell his son that they would be biking from ice-cream shop to ice-cream shop when Max was younger. The Ice-cream Ride has “evolved over the years and this year, riders got a donut from Donut Monster”—a widely popular donut shop in Hamilton. Riders were also awarded at the finish line with a dessert from the well-known Eva’s Original Chimneys.
Sedmihradsky states that this year’s ride “had a great turnout.” His coworkers and students came out to support the ride along with Olympic athlete Sue Palmer-Komar, a Pan American Games competitor, and elite cyclists from a Toronto cycling club. Cyclists looking for a challenge were invited to participate in the third activity which was Max’s Big Climb. This activity involved a gruelling one-kilometre ride uphill.
The hill was renamed Clara’s Climb in 2013 in honour of Olympic cyclist and speed skater Clara Hughes who used to train on the steep hill for seven years.
An administrative meeting held by Principal Ulrich Krull prompted a partnership between Sedmihradsky and Patrick Gunning, a professor in UTM’s chemistry department. As Sedmihradsky recounts, “[Gunning and himself] talked and [Gunning] said he would ask one of his Ph.D. students to look in to Duchenne. About two weeks later, [Gunning] seemed pretty excited and said that they had discovered a few molecules [which] could have an impact on Duchenne muscular dystrophy.” When Gunning expressed his interest in investigating DMD further, Max’s Big Fellowship was formed. The fellowship raises money to place a Ph.D. student who will work on trying to find a cure for DMD in Dr. Gunning’s lab.
Sedmihradsky feels that this collaboration “speaks to the type of community that UTM is. The idea that [he] works in the same building as Dr. Gunning’s lab and where the cure for DMD may be discovered is pretty amazing.”
One of the most memorable moments for Sedmihradsky was when he and his family met Prime Minister Trudeau. As he relates, “MP Karina Gould arranged for Trudeau to deliver a speech in the House of Commons to Max about Max’s Big Ride.” However, Parliament broke up early that year so the speech did not happen. In 2018, Sedmihradsky and his family met Trudeau for a quick photo, and this year in 2019, “[they] were lucky enough to go into his office and have a conversation with [PM Trudeau].” Sedmihradsky says that PM Trudeau remarked that “[he] always knows that it is the beginning of summer when Max’s Big Ride rolls into town.”
Another proud moment for Sedmihradsky was when Grain and Grit, a local brewing company, agreed to make a fundraising beer named Max’s Big Beer and donate proceeds to DMD research. The brewery consulted Sedmihradsky regarding Max’s favorite flavours and created a vanilla peach milkshake India pale ale. Max was involved in this process as he got the opportunity to add Fuzzy Peaches—a gummy candy—into the vat. Max’s Big Beer was one of the most popular beers sold by Grain and Grit and was the second-biggest seller ever at the brewery. According to Sedmihradsky, the beer also aids in “raising awareness as people who haven’t heard about Max’s Big Ride or DMD can pick up a can of beer and find out about DMD.”
Sedmihradsky is highly appreciative of all the support he has received from several individuals including UTM students. Through the Centre of Student Engagement’s Social Innovation projects, students have been helping out with Max’s Big Ride for the past three years. This year, students played an important role as they encouraged him to pursue his idea of distributing merchandise with the logo ‘FCK DMD.’ The logo is based on rap group Run-D.M.C.’s logo and stands for Fundraising, Care, and Knowledge of DMD. The logo ties in with slogan “In the fight against DMD, the only thing that is missing is ‘U’.” Students in Max’s Big Ride’s Social Innovation project helped Sedmihradsky make over a thousand buttons and a social media campaign. Other merchandise included bracelets and t-shirts and were shipped all over the world. Through this venture alone, Sedmihradsky and his team were able to raise $600.
Sedmihradsky thinks that “it is really cool to see student involvement on campus” and encourages students to participate in Social Innovation projects. Max’s Big Ride will be one of the projects this semester and will entail working on a documentary about empowering individuals to take action. If students are interested in participating, they can go online to the Centre of Student Engagement website and register for the project.