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For more information on Cystic Fibrosis please visit the Canadian Cystic Fibrosis Foundation at www.cysticfibrosis.ca
Each province in Canada has active Chapters. There are a total of 50 chapters located in Canada. Individual chapters are made up of volunteers who are deeply committed to finding a solution to CF. They organize and stage fund raising activates, raise awareness of CF in their local communities, and support family and friends who are coping with CF daily.
Click here to find a CCFF Chapter near you.
Contact Us
Canadian Cystic Fibrosis Foundation
Vancouver and Lower Mainland
4050 Graveley Street
Burnaby
British Columbia
Canada
V5C 4A5
Telephone: (604)436-1158
Our chapter office is open
Monday-Friday from 9:30am-5:00pm
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It is actually the beginning of Day 4, I am sitting at a kitchenette table at the Sahara Motel in Osoyoos and it is 4:45 am and the first light is just glimmering over Anarchist Mountain the mountain we start off with in a few hours, but I can’t sleep so I thought I would try to catch up on my journal. Yes it has been difficult to post not because I don’t have time or am too tired but being a social animal I would rather have a post cycling chat and beer with my colleagues. Then it is time for dinner and very quickly thereafter its beddy-bye time. Back to Day 2. I was riding with John Edworthy and my SFU mates, Sandi, Brian and Mieko. We were first out left Harrison quite early at about 8:00, the weather was mixed with some people suiting up for rain and others, myself included, just hoping it would improve as we exited the valley. It did stay cloudy but it didn’t rain so we had an uneventful ride to Hope and made good time on the straight Highway 7 stretches heading into Hope. At Hope we stopped to take photos in front of the May Trucking office (some sponsors there) and then to my real destination, before the climbing started, the Home Café for coffee and ice cream. As were enjoying out treats other cyclists started swinging by on the old highway 3 and Mieko became concerned we might get left behind. I was fairly convinced that our climbing skills would soon bring us back into the pack and that is how it did turn out. Once back on the Highway we swung toward Highway 3, the Crowsnest Route and left a lot of the traffic behind that was heading up the Coquihalla. Yes, 10 mile hill culminating at th Hope Slide was a grind (about 2400 vertical climb but the grades weren’t too steep and we could spin up at 13-14km/hr) After a shirt refuelling at the slide parking lot we headed out and followed the Sumallo River downstream for 15 or so km. before heading uphill again against the current of the Skagit River. Again the second climb was long but not particularly steep except for the last few kilometres where it got to 5% or so I did not find the summit that difficult. Allison Pass peaks out at 4200 feet so there was a lot of climbing involved. The last 10 km was a glorious downhill swoop to Manning Park Lodge, although Avi and David managed to overshoot by 15 km and ended up at Eastgate and were bussed back. The weather had turned for the better and although not hot we could sit on the lawn at the Last Resort and have a beer and everyone took the opportunity to clean their bikes. Well almost everybody as some people paid to have their bikes cleaned (a service offered by Chris Kvan’s brother Dave who set up a this service for ten dollars a bike). A few middle aged guys jumped all over this offer and we had some very shiny bikes the next day. That evening the Kinsmen from Coquitlam served us a big spaghetti dinner, and afterwards some of us went for a hot tub followed by beer and pool at the Manning Park pub. I also heard stories of some hanky-panky in the Pinsky room with Max and many other women but I won’t comment on that. Also on a separate note photos will soon be posted of what is left of Sandi's Ipod after it took a turn through the chain and rear wheel of her bike.
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Is there a cure?
As yet, there is no known cure for CF, but there is real hope. Comprehensive treatment programs have dramatically extended the life expectancy of persons with CF and many are living into their 20s, 30s and beyond.
Recent years have seen remarkable progress in CF research. Since 1989 when Canadian researchers discovered the gene responsible for CF, global research to find a cure for the disease has brought us closer and closer to a solution.
The astonishing pace of CF science suggests that there is good reason to feel optimistic about the future.
How does CF affect daily life?
For persons with CF, life includes a daily routine of therapy and periodic visits to a CF clinic. Otherwise, most individuals with cystic fibrosis lead normal lives, for many years, in terms of education, physical activity, and social relationships. Eventually, however, lung disease places increasing limits on daily life.
Thanks to the advances in research and clinical care, growing numbers of children with CF are surviving into adulthood. In 1960, when the CCFF was founded, a child born with cystic fibrosis rarely lived four years. CCFF is one of the few organizations that maintains extensive records, tracking a CF patient from first diagnosis. This data base called, the Canadian Patient Data Registry, is proving that advances have been made with the recent announcement that the median age of survival of Canadians with CF has reached its highest point ever: 37 years of age. This means that Canadians with CF now have a 50% chance of living beyond the age of 37. While this is positive news, the need for a cure is crucial for the 50% who won't reach the age of 37.
Over 41% of all Canadians with CF are over the age of 18 years. These men and women are pursuing post-secondary education, careers and many are having families of their own; a tremendous accomplishment, but not enough.
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