In once describing her friend Simon Ibell, Olympic cross country ski champion and clean sport crusader Beckie Scott once said: “He's pure gold.”
That's a big part of the reason Ibell has been to recruit an impressive array of Canadian sports celebs – including his good friend NBA star Steve Nash (they're pictured together on the right) – to wear 'Be Fair to Rare' scarves to help publicize the campaign today on International Rare Disease Day. Ibell will also be at Parliament Hill handing out the scarves to every MP.
If you want to get a good idea of what Ibell's about, you have to read this wonderful feature written in the Star by my colleague Megan Ogilive. She's also got a story in today's Star on the 'Be Fare to Rare' campaign.
Ibell has Hunter syndrome, or mucopolysaccharidosis II (MPS II), described in Ogilvie's feature as “one of a group of six rare metabolic disorders. People with MPS diseases lack an enzyme needed to break down long chains of sugars, called mucopolysaccharides, in their cells. Over time, the sugar chains, which are used to build bone and connective tissue, accumulate to dangerous levels. The backlog of waste damages organs and can lead to death.”
But Ibell is not just campaigning for himself. He's a smart and driven young guy who's got the courage and charisma to fight for the approximately 2.8 million Canadians – about 1 in 12 – who are also living with a rare disease.
As Ibell points out, that's more than cancer, HIV/AIDS and heart disease combined. He's not trying to say that less should be done about those diseases, but the shocking thing is that Canada is the ONLY developed country with with NO health care policy to support rare diseases.
Not only is that embarrassing for a country that prides itself on its health care, but it also means there's no funding to help patients get access to the rare disease treatments that are available and there's no funding supporting rare disease research.
You'd be hard pressed to find a better advocate than Ibell, who made a lot of friends while working as a dedicated athlete liason for Right To Play before leaving to start the iBellieve Foundation. Among those joining him in the 'Be Fair to Rare' campaign are Olympic champions Clara Hughes, Hayley Wickenheiser, Adam Van Koeverden, ski racers Emily Brydon and Bryan Stemmle, Ron MacLean of Hockey Night In Canada, Right To Play founder and Olympic legend Johann Olav Koss, and many NHLers and other athletes.
People can visit www.BeFair2Rare.com to:
Here's Olympic champions Jon Montgomery and Silken Laumann modeling their scarves: