For Immediate Release
Father and son bike across Ontario to raise funds to cure rare muscle disease
Max and Andrew will be available for in-person interviews from 9:00 am - 10:00 am on Saturday, June 25th at the Centennial Flame on Parliament Hill. They are also available on 289 527 5608 at any point during the ride.
June 23, 2016 (Hamilton, ON) -- Five-year-old Max Sedmihradsky is once again taking his dad Andrew on a big bike ride to fund research to help find a cure for Duchenne muscular dystrophy (DMD), a rare and fatal disease that affects approximately 1 in 3,500 boys. Their ride was recognized in a letter to Max from Canadian Prime Minister Justin Trudeau on June 23rd.
The 600 kilometre ride from Ottawa to Hamilton will begin on June 25 and will raise money for Jesse’s Journey, the only charity in Canada solely dedicated to funding promising research related to DMD.
Duchenne is a devastating muscle disease that gradually weakens the body’s muscles. Of the many types of muscular dystrophy, it is the most common and severe. Boys with Duchenne do not produce enough dystrophin, an important compound needed for muscle growth. Without it, their muscles are easily damaged and begin to breakdown. Most boys will be wheelchair bound by age 12 and experience lung and heart failure in the later stages.
“When you’re told that your child has a fatal disease that has no cure, your world falls to pieces. After crying rivers of tears and experiencing the worst heartache imaginable, we became fixated on learning about treatments and fantasied about the day a cure would be found. While we know that day is still far away, we’re doing everything we can,” says Kerri Sedmihradsky, Max’s mom.
Seeing the benefits of research
Max is one of a few Canadian boys receiving a new treatment, Translarna (atluren), which is not yet approved in Canada but the family has been able to access through Health Canada’s Special Access Programme. While Translarna is not a cure, it has bought Max some much-needed time as researchers work toward one. Since beginning the drug just three months ago, Max’s parents have reported a definite improvement in his abilities.
“He's able to climb to the top of the playground equipment without any help; he can sometimes go up and down stairs without holding onto the bannister; he's walking longer distances without holding our hands, and the other morning he actually ran all the way to school without falling over,” says Andrew.
Because the drug is not yet covered by insurance or government funding, Max’s family is paying for it with the help and generosity of their friends, family and supporters – to whom they are extremely grateful.
Fundraising to help others
Last summer, Max's Big Ride raised over $55,000 and appeared on billboards in Toronto and Ottawa. Max and Andrew hope to meet or surpass last year’s total, raising even more to fund research and raise the profile of Duchenne muscular dystrophy in Ontario and beyond.
This year, father and son will be taking a new route, along the Waterfront Trail and sporting a new logo, designed by the Oscar winning director of the Disney movie ‘Big Hero 6’, Chris Williams. Max will lead the way seated in the front of a cargo bike pedaled by his dad for seven days.
Beginning in Ottawa on June 25, the pair will stop in Smiths Falls, Kingston, Belleville, Cobourg, Oshawa, Toronto, Mississauga, ending at Hamilton’s Bayfront Park. For a detailed schedule and map of their route, visit http://www.maxsbigride.com/2016-route/
On Saturday, July 23, Max and Andrew will host a competitive race up iconic Sydenham Hill in Dundas, Ontario to settle once and for all who is the ”King” and ”Queen” of the Mountain. Max’s Big Climb has partnered with Mountain Equipment Co-op (MEC) and Shawn & Ed Brewing to deliver this exciting race – read more about it here. All (100 per cent) of the proceeds from Max’s Big Climb will go to Jesse’s Journey to fund research into finding a cure for Duchenne muscular dystrophy.
For more information, contact: