Dave Proctor gets attention for rare diseases at Parliament Hill meeting

Ultrarunner Dave Proctor, whose attempt to break the cross-Canada speed record on foot has been halted by a back injury, met with MPs and senior policy advisers on Parliament Hill today to discuss funding for rare diseases, the cause he hit the road for in late June. Proctor, along with his family, Maureen Smith of the Canadian Organization for Rare Diseases (CORD), and Isabel and Tyler Jordan, founders of the Rare Disease Foundation, met with Conservative party officials and Alberta MPs in Ottawa.

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“It was neat to see key policymakers taking an interest in our event,” said Proctor today. “What began as a running event has become so much more. This is the beginning of a conversation. Rare disease has been lobbying for years, but now we’re getting more attention because this affects the average Canadian.”

Proctor reported that a representative from Conservative leader Andrew Scheer’s office expressed strong interest in the cause.

“We are the only industrial country that doesn’t yet have a rare disease strategy,” Proctor continued. 

Proctor has continued his journey across the country to raise awareness, just not on foot. A back injury sustained before his run began took him off the road after 28 days and more than 2,600 kilometres. Proctor’s son has a rare disease (RECA–relapsing encephalopathy with cerebellar ataxia) that affects his movement, took years to diagnose, and that could flare up at any time.

Proctor holds the 24-hour, 48-hour and 72-hour Canadian records for continuous running. Outrun rare has achieved approximately one-quarter of their goal of raising $1 million towards research into rare diseases. 

“The awareness piece is more important,” Proctor said after this morning’s meeting. “And the response from Canadians has been fantastic. Our appeal to people to donate their kilometres and and send a strong message to Canadian families that they are cared for has had tremendous results.”

Runners can donate at www.outrunrare.com