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“Falling down is a part of life, but getting up is living”: UTM faculty member reflects on fundraiser Max’s Big Ride

Max’s Big Ride sets up for its eighth year with the support of the U of T Translational Research Program
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When your child is first learning to walk, you can expect some instability. In 2013, UTM’s Global Mobility Coordinator, Andrew Sedmihradsky, thought the same thing about the movement of his two-year-old son, Max — that his child was experiencing no more than little falls. It was only when the falls became more severe that Andrew and his wife Kerri became concerned.

Andrew and Kerri consulted various doctors, but they did not flag anything out of the ordinary. It was only after one doctor referred them to a specialist that things began coming to light. After running numerous tests, completing scans, and carrying out physical exams, the specialist briefly mentioned one possible diagnosis: Duchenne muscular dystrophy (DMD).

Though some assessments were still needed to make a final diagnosis of DMD, Andrew grew restless because of the stress. 

“I remember [the doctor] saying, ‘Don’t Google it,’ and… I Googled it,” said Andrew. Though he didn’t tell his family what he’d learned, the next few days were tormenting. Andrew went back and forth between believing what he read online and hoping he’d only stumbled across results about the worst parts of DMD.

Muscular Dystrophy Canada defines muscular dystrophy as a neuromuscular disorder, where there are mutations or alterations in certain genes in your DNA. These genes may impact either the muscles themselves or the nerves connected to the muscles. DMD’s symptoms include general muscle weakness that, in early childhood, could cause difficulty walking or even speaking. As these indications can be linked to many different diseases, it is common for doctors to not immediately diagnose it. 

Furthermore, DMD is a genetic condition that only affects one in every 3,500 boys. With no history of DMD in the Sedmihradsky family, it was difficult to believe this condition could be the cause of Max’s instability. 

At the Royal Children’s Hospital in Melbourne, Australia, Max’s tests came back with extremely high creatine kinase (CK) levels. CK is a protein that leaks out of damaged muscle cells; this was strong evidence that Andrew’s worst fears were coming to life. By September 2013, following genetic testing, it was confirmed that Max had DMD. 

“When you get news like this, it’s just shattering,” Andrew said. This news had caused countless sleepless nights for him and his wife, Kerri. The couple soon needed sleep podcasts to get their minds off of the “nightmare” that they were living. Even worse, there was really nothing the doctors could do to improve Max’s condition, as DMD is incurable and would progressively get worse, further weakening both the skeletal and heart muscle. 

Doctors told Andrew and Kerri to enjoy this phase of Max’s diagnosis as a “honeymoon period,” before Max was eventually put on steroids to help preserve the muscle tissue and slow down effects of the disease. 

Despite these drugs showing a lot of promise, they also induce many negative side effects when used long-term, including weight gain, weak bones, high blood pressure, and behaviour changes. When discussing these side effects, the irony of his family’s situation was unreservedly clear to Andrew: “It’s hard to make the decision to give your child something that you know is going to hurt them, even though it’s helping them.” 

In 2014, Andrew and his family moved from Australia to Canada, a plan that was set in place prior to Max’s diagnosis. In Canada, they would have support from Andrew’s parents and the new medical team from the London Health Sciences Centre. Canada is also where Andrew joined UTM in 2014, as the campus’ Global Mobility Coordinator. 

Despite struggles ranging from getting Max’s medication approved to trying to find applesauce for Max from Costco, Andrew remained hopeful. One thing that kept his mindset from falling was a memory of a simple card from a museum gift shop that said, “Falling down is a part of life, but getting up is living.” When recalling the memory, Andrew said, “With Duchenne, eventually you can’t get up, but metaphorically, that is the attitude I choose to take.” 

In light of Max’s diagnosis with DMD, Andrew could not simply sit around while his family went through such a difficult time. “We need to take action when something like this happens,” said Andrew. And act he did: on Family Day of 2015, Andrew launched Max’s Big Ride, a charity bike ride that raises money for DMD year round. Little did he know, he was going to be making some of the biggest connections of his life in the next few years.

Taking action

In 2014, Andrew connected with John Davidson, the founder of Defeat Duchenne Canada and father of Jesse, a young boy with DMD. The Davidsons’ charity began with a walk across Canada and the hopes of a father and son to raise money for DMD research. Their story inspired Andrew to create Max’s Big Ride to partner with them and help with fundraising.

Max’s Big Ride is not your average campaign. To raise awareness and funds for research around DMD, Andrew and Max have been cycling from Hamilton to Ottawa — about 600 kilometers over the course of five days — to get people’s attention. 

Bike rides had always been a special activity for the Sedmihradskys, and Max’s Big Ride was no different. Since 2015, Andrew and Max have ridden on a cargo bike with a specially designed place for Max to sit comfortably. Kerri drives a van alongside the bike with Max’s younger sister, Isla. 

After joining Defeat Duchenne Canada in 2014, Andrew’s confidence in fundraising grew progressively. “I didn’t know anything about fundraising… I didn’t know what I was doing, I just knew I wanted to do something,” he said. 

With the support and expertise of his new partners at Defeat Duchenne Canada, Andrew was able to create and organize new fundraising events himself. He was able to learn how to design websites, make Max’s Big Ride t-shirts and swag, and engage with the media to get his story out there. 

Later, Ulrich Krull, the then-principal of UTM, encouraged Andrew to connect with Dr. Patrick Gunning, a brain cancer researcher and head of the newly launched Centre for Medicinal Chemistry at UTM. A literature review of current research in DMD showed evidence that Gunning’s work in STAT3 protein pathways overlapped with this field, driving him to partner with Andrew. Then, the pair’s work truly began.

In 2017, Andrew decided to separate from Defeat Duchenne Canada in order to fully support the Gunning Group with the donations from Max’s Big Ride. He was able to create Max’s Big Fellowship, a scholarship that sponsored PhD students at U of T in research projects involving DMD. 

In the eight years since Max’s Big Ride began, Andrew has raised almost $300,000 to further the Gunning Group’s DMD research. This includes Max’s Big Ride’s newer connection with the U of T PRiME initiative to create the PRiME Fellowships with U of T, including the Clinical Catalyst scholarship, where researchers are directly paired with someone in the hospital for their research project. With these funds, the Gunning Group has already worked with different proteins, such as STAT3, which transmits signals for the maturing of immune system cells, and HDAC2, a potential component of cellular antiviral response.

A Max’s Big Fellowship recipient and Gunning’s PhD student, Yassir Raouf, has been able to come up with a novel approach for inhibiting HDAC proteins to help grow muscle cells, although the research has primarily focussed on cells rather than living systems. 

In 2022, Dr. Gunning and his group received the University of Toronto Connaught Innovation Award to continue the work being done for DMD. “We’re hoping that we can get some really good data with a view to [run] a preclinical model, which is quite expensive, in the not too distant future,” says Dr. Gunning.

Since 2015, Max’s Big Ride has continued to expand their outreach with the help of their connections. It has also created smaller fundraisers to encourage the community to raise money for DMD, such as The Ice Cream Ride in connection with Rudy’s, an all-natural, locally sourced vegan ice cream and paletas shop in Hamilton. Here, unlike during the Big Ride, “You consume more calories than you burn.” 

Andrew and Max have also created an extra challenging event called Max’s Big Climb, in which bikers race up Sydenham hill in Dundas, Ontario — the same hill that Olympian medalist Clara Hughes used in her training. Other fundraisers include Max’s Big Beer, with a company Grain & Grit Beer Co. that annually brews Max’s Big Sour — based on Max’s favourite candy, Sour Patch Kids — and donates 50 cents from each can sold to Max’s Big Fellowship. 

As for the ride itself, Andrew chose Parliament Hill as the final destination because of the roles that politics and government play in the approval of new drugs and research funding. Following the ride, the group holds meetings with politicians to continue raising awareness about DMD and have discussions on the importance of research towards the disease. Max, now 11 years old, gets involved in the program to tell his story as well, even getting the opportunity to speak with Trudeau himself.

When speaking to The Varsity about his opinion on the ride, Max said, “I enjoy it when we do it in person, when we get to see a bunch of new people and new places.” He further elaborated, “[The ride] is important to me because if we do raise enough money, it would help me a lot.” 

This year, Max’s message is being heard and taken on by a new group of U of T students — members of the Translational Research Program (TRP), a Master of Health Sciences program in the Faculty of Medicine that focuses on turning laboratory observations into interventions to improve health of individuals and the public.

Expanding outreach

Alongside the TRP, Andrew has inspired action for Max’s Big Ride, both from others and himself. “I [had] felt like I reached a point with Max’s Big Ride, where I’ve maybe taken it as far as I could, just through trial and error and experimentation, and I wanted to learn more skills,” Andrew said. 

When joining the TRP, however, he noticed that what he was learning could be directly applied to what he wanted to do with Max’s Big Ride. The TRP’s main focus is person-centric research projects. Dr. Richard Foty, a TRP assistant professor and early advisor to the program, describes it as “a very applied program [where we] teach students first how to identify unmet medical needs [and then teach] them ways to expedite innovation in order to improve healthcare.” Here, Andrew was also able to find support from his cohort members, professors, and guest lecturers.

“Professor Richard Foty has really embraced the cause and is riding. [We’ve] also gotten a bunch of other students on board, the majority of [which] are not cyclists… so they’re really challenging themselves,” Andrew said when asked about his cohort’s participation. “I can sense there’s some apprehension, nervousness, and anxiety around [the 500-km ride], but I think it’s amazing they’re still pushing themselves. That means so much to me.” 

In the TRP, some students have taken on the roles of logistics and social media coordinators to help spread the word and work behind the scenes of Andrew’s fundraiser. As of July 4, the Instagram account for Max’s Big Ride has 1,054 followers; seemingly a result of its new logistics team adding stories about the riders themselves and showing the collective distance the group has travelled.

Andrew has gained a sense of community through connecting with Pat Furlong, a guest lecturer with the TRP and founding president and CEO with Parent Project Muscular Dystrophy. Speaking at conferences worldwide and considered as one of the greatest influences for DMD advocacy, it’s no wonder she has been an inspiration for Andrew, even prior to joining the TRP. 

“She’s an example of someone that we could become from the TRP,” Andrew remarked. “I [may not be able to] do everything Pat has done, but I can take some lessons out of her book and maintain that relationship with her [to continue to] learn from her.”

When asked about Andrew, Foty remarked, “It was clear in the interview: Andrew had a reason to be in this program. He’s got an unwavering energy and enthusiasm and positivity which is infectious.” 

Similar statements were made by other riders Andrew had encouraged to join the cause. “Andrew has put so much heart into it, and I’ve never seen someone so passionate about something,” said Nathalie Trinh, a student with the TRP who will be participating in the ride this June. 

Even riders outside of Andrew’s cohort have been drawn in by his drive. U of T student Julia Jenkins connected with Andrew through her sister, who is a member of the TRP. Jenkins commented not only on Andrew’s passion, but also on how he and his family “were determined to create hope where a lot of people found hopelessness.” As a member of the Panhellenic community and an undergraduate student in economics and humanities, Jenkins’ participation in Max’s Big Ride opens new doors for outreach and support outside the medical community. 

From this program, Andrew is beginning to learn more effective ways to expand his reach and form more connections than before. The main goal of the TRP is to involve communities in the development of person-centred projects; Max’s Big Ride has taken on that goal, just as the TRP has taken on Andrew’s challenge. 

For the eighth annual ride, which was completed on July 1 and was the third Max’s Big Ride at Home, Andrew set up a stationary bike on his front lawn and tracked his kilometers through Strava, a GPS cycling and running app. With this app being able to track cycling from smartphones, stationary bikes, and smart watches, there is a way for everyone to participate in the ride. 

While still in its preliminary stages, Max’s Big Ride hopes to continue its expansion to include more members and riders in the future. With the connections Andrew has made in the past year, from worldwide advocates to energetic students, no perspective is being left out as he develops his fundraiser. As Andrew said, “You get support from all sorts of places, even places you wouldn’t expect.” 

As for his attitude towards his riders, Andrew remains motivating and supportive, since in his eyes, “It doesn’t really matter if you don’t make 500 kilometers… You’re still helping.” Max’s Big Ride has never been about the distance; instead, “It’s about letting people know about the cause and why we’re doing it.”

 

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