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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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Friday June 28, 2008 This was a day of contrasts. A day of almost no hills when the prior three days had all been big hill days. A day of a big busy highway (no’s 3 and 95 heading North South) when the previous few days had consisted of secondary highways) and a large contrast in accommodations from the morning’s slightly dated, still smelling of 50 years of cigarette smoke Downtowner Hotel in the noisy heart of Creston to the evenings surprise lodgings at the 4.5 star St. Eugene Mission Resort. The ride itself was relatively uneventful. The only real excitement were the self made breakaways and catches by one group of riders on another. Hunter took both a turn as the breakaway group when he and Brian Rose were captured by a few of us in pursuit (Su Ning, Mark Lavigne, David Strange and myself for those with an interest) and later Hunter did the pursuit and caught up with us and was part of the fast group that led out after lunch and cycled the 30 km’s into Cranbrook at a 35+ pace. We only cycled about 110 km (a few months ago this would have been a major undertaking but now this distance with no big hills is seen as more of a Sunday ride). The major event of the day happened when we arrived in Cranbrook. Marcel informed us that the Sandman had let our reservations go, mistaking the cancellation by CP (rail) who did cancel for CF (us) who had not. But Dan the manager made up for it big time. He made arrangements for us to stay at the St. Eugene Mission Resort about 10 km North of town. So that is where we spent the night at a lodge that combined beautiful surroundings, superb beds, showers that ran at the proper temperature and a great luxury hotel ambience. Sometimes God smiles on you. Even the cycle out here was on a secondary road and was the best cycling of the day. Life was very good last night. We all congregated at the 19th hole and had a few pitchers of beer and a high end pub dinner. Whoever made the call on this,,…thank you very much! My only scare of the day is that we are now riding in big traffic and yet the highway was very bicycle unfriendly. The rumble strips wavered all over the cycling lane and they were deep and nasty to encounter at any speed. Sometimes they kept going when the paved shoulder disappeared and forced you to ride into the gravel, or jink left into the traffic lane. The bridges did not have a cycling lane and we had a scary moment when the cyclists all rolled over the bridge with oncoming traffic and a big RV who could or did not slow down. There was enough room, but certainly not enough of a safety margin. So cyclists who read this, shoulder check before you cross the bridge and be prepared to wait. You don’t want to be dead right. I also had two family visitations. My nephew Stephen Brine and his wife Laura and 2 children came into town from Kimberly and had dinner with Hunter and I. Later that evening Eva and friends rolled into the resort. They spent the night camped out and we just finished breakfast this morning. Eva and Kassia and friends are going to give us support today. Tomorrow night Jan arrives at Radium. Till later then its time to suit up and ride.
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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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