After a series of health issues, Okotoks extreme long distance runner Dave Proctor was forced to end his quest to run across Canada last month.
Originally intending to complete the endeavor by himself, and raise $1-million dollars for the Rare Disease Foundation, his fundraiser has been nationally supported by fellow Canadian runners, who donated their "logged" miles, the "Out Run Rare" Foundation has managed to make it across Canada several times over.
However, Proctor has not finished his goal of supporting the cause, and earlier this month, attended a meeting with policy makers in Ottawa at Parliament Hill, to discuss rare disease research strategies with policy makers.
Proctor says, these conversations are long overdue.
"We've gone to Ottawa for years for real rare disease policies, and we haven't been getting them for years and years, and I think for the first time our government is now paying attention. I think what they are noticing is Canadians are paying attention, and really...our government works for us."
Proctor says his sentiment is shared by Foothills MP John Barlow, who reached out to Proctor after his campaign was halted, and assisted with arranging the meeting.
"So he ended up meeting with us, and bringing other MP's and other policy makers into the fold, and in my opinion, for the very first time in rare disease history in Canada, we have started real concrete discussions with policy makers in Canada, in Ottawa."
Proctor recounted his experiences dealing with the medical community, when his family was struggling to get a diagnosis for his son Sam, who suffers from a rare disease known as Relapsing Encephalopathy with Cerebellar Ataxia (RECA), that affects his mobility.
"I call it the diagnostic odyssey, its a long road, time and time again you have an experience where you visit a hospital, or visit a medical team, and while they try their best, rare diseases often do not fit the mold, so medical professionals may overlook a problem that's severely affecting either yourself, or someone you love. It can be a very isolating feeling, living with a rare disease."
While his fundraising goal continues, Proctor is more confident that Canadians are tuning in to those struggling with rare diseases.
"If Canadians care, politicians have to create good policies, and I think for the very first time, because of our message and Canadians support, I think the messaging is clear: Canadians care about rare disease, and want Ottawa to do their part."
Send us your news tips, story ideas and comments at [email protected]