Todd Neil might as well have been diagnosed with the deadly disease himself when he found out his brother Kevin had colorectal cancer in 2011.
The Niverville man wondered how he could lose 38-year-old Kevin to a disease that shouldn't affect someone so young.
But his diagnosis was even more troubling: experts said Kevin most likely had Lynch Syndrome, a genetic condition that made him more prone to developing cancer.
And since Kevin was his identical twin, chances were Neil had the same genetic predisposition.
Three to five per cent of patients diagnosed with colorectal cancer have Lynch Syndrome, say medical experts.
Meanwhile, Neil found out the province does not cover Lynch Syndrome testing for most people. If the brothers wanted the test, they would have to pay $3,000 to $7,000 dollars each. (Even though Neil has not been tested, he is being screened for colorectal cancer regularly, as if he has Lynch Syndrome.)
Since then, Neil, a software manager for an equipment leasing company, has joined forces with Lynch Syndrome International and has rallied the Manitoba government to fund Lynch Syndrome testing for all patients at risk of the genetic mutation.
"They are ticking time bombs just waiting for their turn. If they can be screened properly for those kinds of things and catch things earlier... I don't see why people shouldn't have that option," says Neil, whose mother, aunt and grandfather all died from cancer before they turned 50.
"My involvement with the government is to nudge them along and make sure that they are aware of this kind of thing," says Neil.
His lobbying efforts appear to have paid off.
In April, he received an email from Health Minister Theresa Oswald saying the province will begin testing for four gene mutations associated with Lynch Syndrome sometime this year.
"It's better than nothing. But you still need that sacrificial lamb in the family -- somebody to get colorectal cancer. That will open the book for the family and see what's happening."
Further helping his cause is Saturday's Kick-Butt For Colorectal Cancer, a fun walk/run at Kildonan Park. The event starts at 10 a.m., with registration beginning at 8 a.m.
All proceeds from the run will go to the CancerCare Manitoba Foundation, specifically towards testing for Lynch Syndrome.
Neil and his brother have participated in the event since 2011 and were surprised to learn the funds raised this year will go toward their specific cause.
Colorectal cancer survivor and Kick-Butt founder Sid Chapnick says he decided to earmark this year's proceeds for Lynch Syndrome after hearing about it from an acquaintance who was tested.
Chapnick founded his Kick-Butt run in 2007 with his wife the year he was diagnosed with cancer.
He's now cancer-free after undergoing chemotherapy, radiation and several surgeries.
"I think it's important to get the word out about this dreadful disease," says the Crescentwood father and husband.
Chapnick was diagnosed at age 57, three years after experiencing diarrhea-related problems he initially attributed to milk intolerance.
It turns out he had a cancerous tumour the size of an orange.
He was a recreational runner prior to his diagnosis, but Chapnick admits his health in other aspects of his life was never a high priority.
"I was overweight. I was smoking while I was running," says Chapnick, who ate red meat daily. "I ate anything and everything I wanted at that time."
Today, after five arduous surgeries, Chapnick, 63, has changed his ways. He feasts on vegetables daily and shuns red meat, except for once a month when he splurges on a hamburger.
He also walks and swims several times a week and plans to participate in Saturday's Kick-Butt event.
"It's not for me. It's for the families who have lost someone, who are going through treatment with someone. (It's for) the survivors who lead off the run in yellow shirts. This run is very important to them," says Chapnick.
For more information, log onto www.kickbuttrun.com or email Sid Chapnick at firstname.lastname@example.org.
Registering the day before the event is not required.
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