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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 28, 2008 If on any day this spring and early summer our ride had ended at Radium Hot Springs, Sandi, Mieko, Brian and I most assuredly would have jumped into the hot springs. Today our ride ended at this lovely resort area in the mountains on a day that reached 37 degrees. The only thing that we could think about immersing ourselves in was some cold water over our head and several cold beer. Our intention was to set off early in the morning from the resort, and back track the few kilometres to the highway and then continue on Highway 95. However our starts have been later and later each morning and we did want to enjoy not only the great breakfast buffet at the 19th hole but just to soak in the luxury spa ambience of the St. Eugene Mission Resort. After all we were only doing 150 km. today with only a modicum, of climbing. Eva joined the entourage today and immediately set out to paint the trailer and both vehicles with some GearUp 4CF artwork. She also gave Hunter a sporting blue facepaint that he wore all day. At lunch Kassia and her boyfriend Dan joined us to provide further support. Then shortly after we arrived in Radium Hot Springs my wife Janet and John Edworthy’s wife, Heather rolled up in a black Mustang. Quite a family gathering to see us cycle on our last day to Banff Our cycling day went pretty much according to plan. We rode single file, there were no chases and breakaways other than David Strange who likes to ride Triathlon style to ease his aching back. There was a pact to keep our speed at 27 and under unless there was a following wind and for most of the day we did indeed have a tailwind. The heat started early and initially we had rough pavement on the shoulders forcing us to ride on the actual roadway. This got us a few dirty looks and honks as the locals couldn’t understand why we chose to ignore an eight foot wide shoulder. My Cervelo RS which has two Paris/Roubaix victories in its short lineage was the perfect bike for this type of roadway as the skinny, curved seat stays dampen out a lot of road vibration. Our lunch destination was Canal Flats 80 km from our start but there was not the usual idyllic spot beside a river. Instead we were in a bit of a gravel quarry underneath the highway overpass with a train track (and subsequently a train) not 10 feet away. In the afternoon five of us settled in for a shared ride and slowly the kilometres melted away as we in turn wilted in the heat. A few hills but nothing major. The only casualty of the day was Mieko who fell off her bike not once but twice and has skinned knees and an elbow as well as a sore hip to show for it. Mieko is usually a very careful rider but this time she almost hit Sandi and fell down as she spun into gravel and then collided with Anne Gregson at the top of the big hill overlooking Columbia Lake. We are all a little worse for the wear. Sore rear ends, aching shoulders and necks, some strained knees, and significant overexposure to the sun are common complaints. We will persevere until tomorrow afternoon. Chinese dinner on the lawn by the gazebo was followed by presentations from Sandi and Mieko to each and every rider and support person highlighting some foible, or character tic that the girls had noted for just this type of evening. Let us say that mine involved a diaper and leave it at that. Avi received some girls thongs that he had to model, Mark Lavigne received some extra chest hair for a missing patch that only the girls had noticed, and Su Ling received a tattoo from all of us to accompany the tattoo that all the men had noticed on her dip in the river at Johnny’s Motel. You get the drift. Tomorrow is our final day. It involves a 500 metre climb right out of the gate and then a gradual climb to the divide and then a drop into Banff. But that’s tomorrow. This evening it’s still hot and I think that I will drink another bottle of water. Or maybe a beer
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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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