In 2005, Ibell took a marketing and fundraising job at Right to Play, a new charity founded by his friend Johann Koss, the gold-medal speed skater, to improve the lives of children in developing countries through sports. Ibell was quickly promoted to talent management and spent his days convincing star athletes to donate their time and names to the cause. It was a sports fan’s dream job. Ibell used his charisma and contacts to send Chicago Blackhawk Steve Montador to Rwanda and Tanzania, Olympic kayaker Adam van Koeverden to Liberia and Boston Bruin Zdeno Chara to Tanzania to work with and promote the organization.
Koss remembers the time Ibell charmed a group of NHL players and then introduced them to his boss for what’s known as the Big Ask. “One of the players told me, ‘I really trust Simon, and if you’re with him, you must be good, too,'” says Koss. It’s a common sentiment heard in reference to Ibell. Former coaching colleague Triano compares him to an elite athlete: “Some athletes reach the top and stop working. But the really successful ones carry the same values they always had even after they’ve reached the pinnacle.”
Simultaneously, Ibell worked on his own foundation, slowly and steadily raising awareness about Hunter syndrome. But in February 2010, just before the Winter Olympics in Vancouver, a new health scare renewed his sense of urgency. He came down with pneumonia, which is potentially fatal for someone with a weakened immune system. Ibell cancelled his trip out West to recuperate. “I had a bit of time to think,” he says, “and I realized maybe it was time to make the next move.” When he recovered, Ibell made the difficult decision to leave Right to Play, rented a small office in downtown Toronto and devoted himself to iBellieve, the new, larger incarnation of Bike 4 MPS.
His goal is to raise enough money – $30 million by 2018 – to find a cure for Hunter syndrome and build a dedicated research facility in Chapel Hill, which, thanks to Dr. Muenzer, is already the leading centre for research and treatment of MPS disease. Rare diseases receive little funding, and therapies are often more expensive than those for more common illnesses. Case in point: Ibell’s Elaprase regimen costs $400,000 a year. In 2008, Ibell successfully lobbied the Ontario government to cover the cost of treatment for everyone with Hunter syndrome. He knows that other people with rare diseases are not so fortunate. “More people suffer from a rare disease than the big three combined: cancer, heart disease and HIV/AIDS,” says Ibell. “And we get no funding. No funding for current treatments and no funding for research for new treatments.” So, in addition to iBellieve, Ibell has founded Be Fair 2 Rare, an initiative to bring attention to rare diseases and the one in 12 Canadians who suffer from them. At the launch event held last February in Toronto, he raised $20,000 in two hours.
Awareness-raising is exhausting and competitive business, but Ibell is both a natural-born optimist and a seasoned activist. As Triano put it when talking about his one-time protege, “I would never bet against him.” Why would you? Simon Ibell isn’t just playing to win – he’s playing to live.