In only its second year, Max’s Big Ride is making a huge difference in raising awareness and funds to cure Duchenne muscular dystrophy.
Max, 5, and his dad, Andrew Sedmihradsky, are taking a well-deserved rest these days after a tiring but fun adventure took the pair on an 11-day trek from Ottawa to Hamilton aboard a cargo bike. It’s the second time the duo has embarked on a marathon fundraising ride.
“As I was planning for this year I wondered how we would ever top….last year,” said Sedmihradsky. “But I feel like we did. Having an Oscar winner (Chris Williams) design our logo, getting a letter from the prime minister and meeting (Toronto) Mayor John Tory is a pretty amazing combination and would have been unthinkable when we first started Max’s Big Ride in early 2015.”
About 18 months go, Sedmihradsky rolled up his sleeves and began a determined effort to thwart the disease that is threatening his young son’s life. Max has Duchenne muscular dystrophy, a fatal and progressive genetic disorder that gradually weakens the body’s muscles.
“I won’t just sit by and let this disease take my son without a fight.”
Sedmihradsky’s efforts are making a difference on several levels.
“I won’t just sit by and let this disease take my son without a fight,” he said. “So on a personal level, it is very important to me to be active and fight.”
Max’s Big Ride has also raised $100,000 — $75,000 for research via the registered charity Jesse’s Journey and $25,000 to pay for a new drug called translarna.
Along with raising funds, awareness of Duchenne muscular dystrophy has been a key component of the ride.
“The prime minister, Mayor of Toronto and federal health minister all know about Max and DMD – and this will be important as more drugs come on the market and we need support from those in power to get them approved and funded,” said Sedmihradsky.
Max is currently one of a few boys receiving translarna through Health Canada’s Special Access Program. It is not a cure, but it is buying much-needed time while researchers work to find a cure.
Meanwhile, the bright and funny five-year-old kept his dad very well-entertained during their travels from Ottawa to Hamilton. Although he had some toys on board the cargo bike, Max preferred to chat. The Sedmihradsky boys made plans to form their own band called “Ice Cream,” remarked on the passing scenery and made up superhero stories.
“I always tried to work Max into the stories somehow and we had one rule — no stories while we were climbing hills — I was too out of breath,” said Sedmihradsky.
To learn more about Max’s Big Ride, Max’s Big Climb or to make a donation, visit www.maxsbigride.com.