On a day where scarves are definitely an asset in Toronto, Olympic world champion Adam van Koeverden would like you to consider buying one with a special message: Be Fair 2 Rare.
Today is International Rare Disease Day, marking the one-year anniversary of the Be Fair 2 Rare campaign launched by the iBellieve Foundation. The campaign, aligned with the Canadian Organization of Rare Disorders, seeks to increase awareness, funds and advocacy for the rare disease community in Canada.
These diseases aren’t as rare as people think when you consider that 1 in 12 Canadians suffer from one of over 7,000 different rare diseases.
Yet Canada is the only developed country in the world that doesn’t have a national health care policy supporting research into cures. Canada also doesn’t support existing therapies, meaning patients can’t access therapies that could save or dramatically improve their lives.
Rare diseases are usually life threatening or life altering – and children represent 75 per cent of those afflicted.
The force behind the Be Fair 2 Rare campaign is Simon Ibell, whose former work as an athlete co-ordinator at Right To Play and friendship with the likes of Steve Nash and Dirk Nowitzki has created numerous connections in the sports world.
Ibell has Hunter syndrome, or mucopolysaccharidosis II (MPS II), a rare metabolic disorder. In a great feature on Ibell, the Star’s Megan Ogilvie wrote of the disease: “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.”
Also championing the campaign is Olympic and world kayaking champion Adam van Koeverden, who blogged about the cause today. He didn't bring his scarf with him to the team's current training camp in Florida, though.
“I’m 100 percent involved because of Simon Ibell,” said van Koeverden. “He’s a good friend of mine. He’s an inspiring guy. He’s brought to light a lot of very interesting facts and figures and realities about the world of rare disease.
“By nature, rare diseases don’t get a lot of consideration or attention because they’re so rare. But as a group, they’re so significant that they really can’t be ignored. Similar to Simon in that he’s so smart and inspiring and concise in his messaging that he can’t be ignored, either.
“Simon is a great role model for activist leaders, for people who engage athletes and the community of Canadians, as most Canadians do. Simon’s just reaching out to develop some awareness and I think it’s a fabulous campaign.”
The campaign is looking for people to sign the petition to support the adoption of a federal rare disease policy at their website www.befair2rare.com, where donations can be made and scarves can be purchased. The scarves also also be sold at Roots.