Thursday, 19 July 2018 01:16

Ultra runner crossing the prairies on record-breaking attempt to raise funds for rare disease research

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Ultra runner Dave Proctor receives a warm welcome from his three children in Swift Current, July 12. From left to right are nine-year-old Sam, who suffers from a rare genetic disease, seven-year-old Adele and 12-year-old Julia. Ultra runner Dave Proctor receives a warm welcome from his three children in Swift Current, July 12. From left to right are nine-year-old Sam, who suffers from a rare genetic disease, seven-year-old Adele and 12-year-old Julia.

Alberta ultra runner Dave Proctor is making his way across the prairies on a mission to run across the country in a record-breaking 66 days while raising $1 million for rare disease research.


He started the Outrun Rare record-breaking attempt in support of the Rare Disease Foundation on June 27 in Victoria, B.C. and reached Swift Current on July 12, where he made a brief stop at Staples, a sponsor of his run.
“The beginning was a big struggle,” he said. “I would say the first six, seven days were the hardest. I was dealing with a lot of body issues, with tendinitis and sleep deprivation, ... but I was able to get over that hump and the body kind of corrected itself and I was able to get into a groove and find what’s most important, and now I’m into a bit of a groove. So I’m clicking off 105’s, 110’s every single day and it seems to be going very well right now.”
He will have to run an average of 108 kilometres every day to achieve his goal of a new Guinness World Record of running 7,200 kilometres in 66 days. The previous record of 72 days was set in 1991 by Canadian long-distance runner Al Howie. Proctor is confident he can keep going for the entire distance.
“I really do believe at this point you don’t run with your legs anymore,” he said. “You run with your heart, and my heart is with my son Sam. I guarantee you, I’m going to break this record and run into St. John's, Newfoundland, in record time.”
His main motivation for this journey is his nine-year-old son Sam, who lives with a rare genetic disease Relapsing Encephalopathy with Cerebellar Ataxia (RECA). He is one of only five people in the world that is known to have this disease. He has a lack of balance and coordination, as well as slurred speech, and he uses a walker to walk to school in Okotoks, where the family lives.
It took about six years before the family received a diagnosis and Proctor noted that on average a rare disease diagnosis in Canada takes over five years, which he believes needs to improve.
“We take our health care system and we lift it up and we think it’s the world’s best, but yet we’re lagging behind most other major countries in the world when it comes to rare disease research,” he said. “We don’t have a rare disease strategy moving forward with rare disease at a federal level, and we can do better than that.”
He thinks Canadians will be willing to support rare disease research if they have a better understanding of the issues.
“One in 12 Canadians has a rare disease and one quarter of children with a rare disease die before their tenth birthday, most of which don’t know what they have when they die,” he said. “These statistics are staggering and I think Canadians will step up and support rare disease research.”
The money raised by his record-breaking attempt will be used by the Rare Disease Foundation to fund micro grants for rare disease research studies.
“These micro grants cost $5,000 to $6,000 in order to manufacture a study to benefit families living with rare disease,” he explained. “So we can end up supporting a lot of research and I think that’s exactly how we can benefit most families living with rare disease. ... It's helping those doctors to be able to help those families, because those doctors want so desperately to help those families, but when they say 65 per cent of studies last year revolving around rare disease got thrown into the garbage because we couldn’t get funding, what are you going to do?”
Families are facing many challenges when they have to deal with a rare disease, but according to Proctor the issue that every family encounters is a feeling of alienation.
In the case of major diseases there are foundations and support groups that are helping individuals and families to connect and to form a community, but there are over 8,000 rare diseases and it is therefore more difficult to find that support.
“A lot of these people don’t feel like they’re getting the support that they need from the medical system, from research, from doctors, but then as well too, they’re not around other people that are going through a lot of the same things that they are,” he said. “So they feel alienated and that’s not a great place for humans to be.”
For more information about Proctor's record-breaking attempt and to support his fundraising goal, visit the Outrun Rare website at www.outrunrare.com or go to the Facebook page @OutrunRare

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Matthew Liebenberg

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