RDR: Simon Ibell: Rare Disease Patient and Advocate (1979 – 2017)
June 1, 2017
Thank you to Rare Disease Report for this tribute post.
Simon Ibell passed away peacefully in his sleep on Friday May 25, 2017. He was 39 years-old.
Simon was a 4 ft 8 in motivational speaker and a passionate crusader for the rare disease community.
Born with mucopolysacharridosis II (MPS II or Hunter syndrome), he never let his disease define him. Rather, he let his response to the disease define him.
Born in Canada, Simon received his degree in Sports Administration at the University of Victoria and his love of sports lent itself well towards his crusade to raise awareness of rare diseases and finding ways to improve opportunities for people with disabilities.
Teaming up with sports legends like basketball legend Steve Nash, 2000 Olympic triathlon gold medalist Simon Whitfield, Dallas Mavericks owner Mark Cuban, and English football star Steve McManaman, Simon help bring awareness about rare diseases to the masses.
In 2003, Simon was named Canadian Spirit of Sport Story of the Year for having biked 500 kilometres over 10 days on Vancouver Island and raising $250,000 for MPS diseases.
Defying the Doctors
When Simon was a toddler, he was diagnosed with Hunter syndrome. At the time, there was no treatment and doctors told his family that he would likely not live past the age of 2 years.
When he was 2, the doctors said he likely would not live to be 5.
The doctors also advised the family that Simon should avoid sports. Simon and his parents disagreed and let Simon play sports.
He never finished first or even placed in his various track meets. But he did finish.
Eventually, sports became too difficult to compete but that did not stop Simon from being involved. He started to manage teams rather than play in them.
Elaprase and the Cost of Care
In 2003, Simon participated in clinical trials that eventually led to the approval of Elaprase, an enzyme replacement therapy for Hunter syndrome.
In 2007, the drug was approved in Canada but the price tag of $400,000 was deemed too high for provincial health insurance to cover the drug.
That is when Simon used his sports marketing skills to good use. Simon, along with his friend Steve Nash, fought back. In a youtube video, their campaign compared the Ontario government to people driving past a car accident and not stopping to help.
The campaign worked. Later that year, the province of Ontario decided to pay for Elaprase.
That video is below.
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