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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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June 29, 2008 The final day. In some ways it feels as if we have been riding together forever, one small town melting into another, but then at other times it seems such a short time ago since we pulled out of the parking lot in White Rock. Nevertheless here we are, one good day of cycling from Banff. We have developed quite an entourage as well. Dave Strange’s wife Heather and son Carter will be meeting us in Banff as will Bea, Brian Carlson’s wife. Also here for the final day is Sandi’s husband, Dennis, and his father who used Sandi’s cycling excursion as an opportunity to go on a golfing excursion of their own. John Edworthy’s wife, Heather and my wife Janet drove up to Radium in a boss, black Mustang. As mentioned Eva and her friend Kassia had arrived a day earlier to lend vocal, moral, and artistic support. Facing another day of 35+ temperatures we made the logical decision to start early and get the first climb out of the way before the heat settled into the day. John was first out of the gate and the only one to follow the previous evening’s game plan of cycling to the Husky and continuing on right after breakfast. He departed at 8:00am and the rest of us were on the road within the half hour. As soon as you leave the main highway 95 to Golden and turn off on Highway 93 the climb begins as does the scenery. Right away and still in town we came across a herd of big horn sheep. Then we entered a narrow canyon with a creek rushing along almost underneath us. This presented a perfect photographic opportunity, except that my camera was in the car. After that the grade became steeper and steeper with pitches of 10%+. I don’t have an inclinometer but I know from experience that if I am in my lowest gear and my speed drops to sub 10 then it is 10% or higher. Luckily this only lasted awhile and soon I was able to sit down and spin my way up at a comfortable 11-15 km/hr pace depending on the grade. Initially I had some company but soon I was cycling on my own with only John Edworthy about half an hour ahead. Brian Carlson and I refer to all climbs in SFU units (One SFU unit is a climb from Broadway to the café at the top of SFU university or about 1000 ft). We had it figured out at 1.5 SFU units but that was not the case. It felt more like about 3SFU’s and I required 54 minutes to reach the top. Jan and Heather and the aforementioned black Mustang were at the top of the climb and they had water and Gatorade waiting for us. John had already left at this point. Some of us formed a small group and after a lovely descent we started climbing again but at a very low gradient, just basically following the river up the valley. Wildlife sightings included a bear and some deer and one rather large green frog at the side of the road. Eventually we reached the 80 km lunch break just before our final big climb. By this point the sun had soaked into everything, although, as a cyclist you aren’t aware how hot it is until you slow down and step off the bike. While Fran was setting up for lunch we followed a small trail to the creek’s edge and soaked our overheated feet and legs in the glacial water. Some of the cyclists were quite concerned about the afternoon climb having underestimated the morning’s climb. However the grade was considerably less as was the elevation difference. This however was the Continental Pass divide, the boundary between BC and Alberta and at one point we climbed above Columbia Lake, the source of the Columbia River which drains into the ocean in Astoria, Oregon. Marcel told me that when Hunter traversed the divide into Alberta he let out a big whoop because all of a sudden he was of legal drinking age. From the pass it was a long, steep and quick descent to the junction of Highway 93 and Highway 1 midway between Lake Louise and Banff. We regrouped at the Bow Valley Parkway junction, changed one and all into our colourful red GearUp4CF jerseys and rode as a group towards Banff on the Parkway. I had telephoned ahead and our non-cycling entourage had set up a finish line, final destination at Central Park, right beside the bridge at Banff Avenue and the Bow River. We regrouped again at the train station in Banff and rode from the top of Banff Avenue all the way through the downtown core, with the support vehicles festooned with our signage, and with blinkers flashing. We rode two abreast, whooping and hollering at the bemused and curious weekend tourists thronging the streets of the main thoroughfare. At the end of Banff Avenue our enthusiastic support contingent had balloons out and a crepe blue finish line. Four year old Carter had his face painted Spiderman style and was throwing spinnerets at everyone. Big hugs and high fives all around. Mission accomplished and only minor injuries to report. Later that evening during and after dinner at the Greek restaurant, we had some thank you speeches for all our volunteers and the CF parents thanked all the riders who had supported the cause. As well Eva did a special presentation of her one woman vocal mask “One Day in the Life of Ward 8A”. Rumour also had it that certain individuals, including my son, ended up at the pub and played pool until the early hours. However your hard working correspondent was safely tucked between the sheets in a very hot, un-airconditioned room by 11 pm. That’s it, the ride is over. If you are interested in joining us next year phone the number on this web site, speak to Joyce and get your name on the list. It’s that simple. Oh and raise at least 5000 dollars for the cause. Because after all, that is what it was all about.
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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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