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bike riders for Cystic Fibrosis share hope and strength as they fight the disease

The riders have different reasons for putting themselves through paces, but all hope for a similar outcome - successful treatment or a cure.
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Walter

GearUp4CF organizer and Cystic Fibrosis Chapter President Brian Kerr was busy preparing a lunch in the picnic gazebo at Memorial Park, Monday, June 23 as he awaited the arrival of the first of 21 riders  to the village.

This year’s fund raising, 1,200 kilometre, nine day  ride from Vancouver to Banff was doing better, donations - wise, as the target goal of $250,000 had already been exceeded, Kerr said.

“We’ve been noticing, through our national campaign, “Great Strides” that donations were down this year,” he said, noting the big commitment put into the fund raising by those participating.

The riders had their longest day ahead of them on Monday, travelling from Manning Park to Osoyoos, a distance of 189 kilometres.

As he awaited the cyclists, Kerr discussed the disease and the strategies used to fight it.

“There are different strains of Cystic Fibrosis,” he explained, “it’s caused by a defective gene. If someone who is a carrier marries someone else who is a carrier, therel is a 25 per cent chance of CF in their offspring.”

In Cystic Fibrosis, mucous builds up in the lungs, resulting in infections and ultimately the loss of lung function. It also has an effect on the body’s enzymes, resulting in difficulty in digesting fats and proteins, and vitamin deficiencies due to loss of pancreatic enzymes.

“It’s not uncommon for CF patients to have a complicated daily routine with pill intakes exceeding 60,” Kerr said.

Today’s ride contains a mix of riders, some of whom have CF, others who have had a lung transplant, and others still who have family members afflicted with the disease. A few others are simply riding for the cause.

Janet Markvoort provides volunteer support to the cyclists, her husband Bill among them. The couple lost their daughter, Eva, to CF at the age of 25 in 2010. Bill, who turned 65 on May 9, resolved to raise $65,000 in memory of his daughter. This year was his second ride.

“It’s been a beautiful ride,” he expressed later in the afternoon as riders filtered into Memorial Park.

“We had been making really good time until we hit the wind at Bromley Rock.” Bill has already exceeded his  personal fund raising goal, but showed no signs of slowing down on Monday afternoon, looking forward to the final 50 kilometres or so up Richter Pass and down to Osoyoos.

“CF affects the ability of the body to pass chloride, or salt,” Janet Marvoort explained. “CF has a variety of genetic mutations - everyone afflicted has a different manifestation of the disease.”

 

One hundred cyclists took part in the first 100 kilometres of the trek, which began in Crescent Beach on June 21. They biked to Chilliwack, where an additional 15 riders accompanied the group to Manning Park. From there, the core group of 21, meeting in Memorial Park Monday afternoon, headed east on their way to Banff.

Norm, one of the  riders stopped in Kermeos for lunch, said it was his second ride.

 

“I really enjoyed this stretch - from Princeton to Keremeos - the most,” he said, noting stronger head winds this time. Norm was participating in support of the cause.

This year was Mike’s third time to do the ride. He’s 26, and afflicted with CF.

“I’m doing okay, my lungs are getting better,” he said Monday, coughing slightly as he took a break on the cool cement floor of the gazebo. Mike  said he took, “a decent amount of pills” to combat the disease - about 20 a day.

Walter’s riding in memory of his second daughter, who died of CF at age 12,  11 years ago, and for his first daughter, Ali, now 21, who had a lung transplant two years ago.

“The lung transplant was a life changer for Ali,” he said, “she was able to take part in the 100 kilometre ride at the start of the ride this year.”

Walter is accompanied on the ride by wife Lisa, who also serves as one of the volunteers assisting the group. The family knows the family of the donor of Ali’s lungs. They continue to stay in touch with each other.

“We’re all grateful for the fact their daughter’s lungs were used to help someone else to live,” Walter said.

Walter noted the variety of cyclists participating in this year’s GearUp4CF campaign.

“It’s a nice ride,” he said, “There is such a variety in strength of riders, who are all here to fund raise.

“People are  here to raise money to fight CF, and the pain of this nine day bike ride is what they put themselves through to raise more.” He paused, momentarily, looking at several of his fellow riders resting under the gazebo.

“Then there are the bikeaholics,” he chuckled.

 

Anyone interested in donating to GearUp4CF can find more information and make donations at: http://www.cfvancouver.ca/home/events/gearup4cf/