Simon Ibell - The Man Who Refuses to Quit

A rare illness pushed Simon Ibell to the limit. A relentless, no-quit attitude helped him push back. Now he's fighting to help others like him.

By Bert Archer (Reader's Digest Canada, June 2012)












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.

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