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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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Day 6 June 26, 2008 This was the big day for most cyclists. The really steep climb up the highest and longest peak on our trip. The infamous Salmo Creston ride with unrelenting grades climbing at plus 8% for 20 kilometres. And it was all true. We started the morning in Trail at the RayLyn Motel, some choosing breakfast at the restaurant across the way and some of us opting for cereal and fruit at the motel. Part of Leona and Max’s sizable suitcase contained a French coffee press amongst other food items and I was able to cadge a good cup of coffee from her to ward off the early mountain chills. We aimed for an 8 am departure and managed to get off by about 8:30. Sandi led us down into Trail proper (shed had already visited the day before on the overshoot) which is not a pretty town. A big smelter hulks above the town proper and you can imagine the pollutants that must have hung in the air in previous decades as well as all the wastes that were dumped into the Columbia River. The houses and town have a “company town” feel to it, sort of a depressing socialist order kind of sameness. The one bright note was the huge mural painted on the side of the hockey arena commemorating the Trail Smoke Eaters of half a century ago, back in the days when Canada could field a small town amateur hockey squad to the worlds and return as lopsided champions. The Russians finally fixed that with their military hockey program and Canada did not win again until the 1972 Series with Henderson’s famous goal. I digress. We rolled out of Trail which is big enough to warrant a Wal Mart and other strip mall amenities and followed the Columbia downstream for a pleasant few miles. All to soon we closed in on the American border and instead of following a big beautiful valley all the way to Vancouver , Washington, we jinked left back on Highway 3B and climbed up and out of the valley at Montrose (elevation 1948 feet and population somewhat less). It was a quiet secondary road traversing through Fruitvale direction Salmo. We had an unfriendly encounter with a flag person who got his signals mixed up and found ourselves half an hour later being waved over by RCMP Officer Bill who after a few words of explanation by everyone quite rightly ended up posing for photos with us and reminding us to ride single file. We followed Highway 6 after Salmo going downhill with the Salmo River. That all ended just after lunch as we again had to bear East to avoid the border and regained Highway 3. This is the famous Salmo Creston climb. The initial climb was reasonable as we followed the creek upstream into the Selkirks. Then of course we had to lose the stream as we climbed out of the valley to gain the pass. It was a steady 8+% grade and slowly my speed dropped from 15-17 down to 13 then 12 then 11 and finally at the final grade to sub 10km/hour. If you look at a profile map it looks like a child’s graph of a fever with a high temperature spike and an even faster downslope. There was some chat of a King of the Mountain for this stage. John E. John J. Brian Carlson and I left first from the lunch stop, but soon John Edworthy gained a gap. Once the real climb started I was on my own with only John ahead. I worked hard to close the gap and get on his wheel but I did not want my heartrate above 145 as I knew we had 10km to go. I just about made it, within 10 metres actually. Then a miracle happened. John was suited up with an Ipod and had loaded up on Queen tracks. Just then Freddy Mercury cut loose with Prince of the Universe, John picked up the pace and that was the last I saw of him and his Ipod. Soon he was a red speck in the distance. At the summit David Strange closed on me and we rode to the top together. However, King of the Mountain, John overshot the CF lunch stop at the top and had to be ignomiously hailed back by the vehicle. It served him right for wearing an Ipod and not paying attention to his surroundings. Over the next hour everyone else wheeled in and we had lunch inside the warming hut because it was so windy. This was a great accomplishment for every rider and we high-fived the riders as they came in. The Kootenay Pass at the summit of the Salmo Creston route peaks out at 5820 feet (1773 metres) and is the highest all year pass in Canada. A young moose even made a guest appearance at the top. With fierce cross winds the descent from the top became quite hairy and I experienced my first speed wobble on the Cervelo. Luckily I had changed out the brake pads that morning and I was able to put on enough brake to keep it under control. A little further down the mountain the winds dropped and I could hang it out to60+ km/hour. It’s not often you get to descend steadily for 35 kilometres and that was a rush. A short ride through the valley bottom and we were in Creston at the somewhat ratty, dark, Downtowner Motor Inn. Beer and pizza night….yahoo. It was a quiet night and by 10 all the lights were out. 120 km. and 1300 metres of climbing (4300 feet). Tomorrow a relatively easy day. Double yahoo. Bill
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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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