Ibell brought that same competitive team spirit to Bike 4 MPS, the charity he created in 2002 to fund research into Hunter syndrome and related disorders. He founded it after attending a conference set up for the small group with his disease (in addition to the 30 in Canada, there are between 350 and 500 people with Hunter in the U.S. and a total of about 2,000 worldwide). “I realized I had a voice to help others who literally don’t,” he says. “I thought I could make a difference, through my own voice and my network.”
Ibell asked his friends across Canada to collect pledges and held a fundraising night at his old high school. But it was an email to Mark Cuban, the billionaire owner of the Dallas Mavericks – a connection through Nash – that had the biggest impact. The day after Ibell fired off his email, Cuban was fined $125,000 for a courtside dispute with a referee. The hotheaded businessman had a habit of matching his frequent NBA penalties with gifts to charities, and the email from Ibell was fresh in his mind. Including the $125,000 that Cuban kicked in, Ibell was able to raise a quarter of a million dollars by the end of the summer.
As fundraising for Hunter syndrome research picked up, Ibell’s own future was increasingly precarious. Doctors were predicting he had only a year or two to live. As difficult as the news was to hear, it wasn’t a surprise – the National Institutes of Health, one of the world’s leading medical research centres, estimates that people diagnosed with early-onset Hunter syndrome will likely die between the ages of ten and 20. Over the years, Ibell had tried numerous experimental – and painful – treatments; by the time he was in his teens, he told his parents he was done being a guinea pig. “I just wanted to get on with my life and deal with my circumstances,” he says. With their reluctant blessing, he ceased treatments and focused on doing the most he could with the time he had left. Twenty-five years old and increasingly fragile, he was in a holding pattern.
Then, in September of 2003, things began to look up. Ibell heard about a Phase 3 clinical trial at the University of North Carolina at Chapel Hill. Run by an international expert on the treatment of Hunter syndrome named Dr. Joseph Muenzer, the trial would involve weekly trips to Chapel Hill, where subjects would receive hours of intravenous infusions of a new drug called Elaprase, a genetically modified enzyme that replaces the one missing in Hunter patients. Ibell was accepted into the study, and he and his mother, Marie, moved to Toronto to make the commute easier.
The treatment worked. Within a year and a half, Ibell’s disease was more or less shut down. After having come to terms with their son’s imminent death, the Ibells were shocked and overjoyed. Elaprase couldn’t undo most of the damage already wreaked: Though his organs had shrunk back to their normal size, Ibell’s fingers wouldn’t unfurl, he would always need hearing aids, and he wouldn’t magically shoot up a foot and a half to join Nash on the court. However, the drug had changed his prognosis. For the first time since he was a kid, Ibell was optimistic about his future, and he was determined to make his mark.
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.