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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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This is the longest day on the Memorial Route and also the day we say good-bye to half our team as we will split at Keremeos toward the two different destinations. It was decided the cyclist would go in reverse order of their speed so that we wouldn’t get too separated over the long distances. As a result some riders were in the saddle by 7 am after a quick breakfast of cereal and coffee (and bananas, cyclist love bananas). Today we had an extra rider as my son, Hunter, a support driver normally, joined John Edworthy, John Joyce, Brian and myself for the day. Today was long but also a lot of gentle downhill grades as we followed the Similkameen on its journey to the USA for most of the day. This downhill ride was interrupted by a quick climb up to Sunday Summit and then a twisting route past the hairpin creek turns towards Princeton. The long grade by the copper mine allowed for a high speed descent. Mark Nassan, our mechanic, told me later that he experienced a serious high speed wobble at the turn which gave him quite a fright. He is riding a 30 year old steel bike (Colnago, I believe) that was used in the movie Breaking Away (remember the wannabe Italian kid in Iowa who loved to bike). Just past the mine Hunter had his first of 3 flats in succession and depleted our long stem tire supply and so had to wait for the sag wagon. I also saw my second bear of the day (the first just at the exit from Manning Park right by the bear carving). Chris B our German rider who hasn’t seen a bear yet in Canada doesn’t believe any of this of course. We paired up with Hilda, David Strange and James Z and got a very fast ride from Princeton to Bromley Rock, averaging well over 35 km/hr. Lunch was beside the river and I took the opportunity to grab a quick dip to wash all the exertions away. Cold icy baths are all the thing for cyclists after a ride, I just had mine a little early. I told Chris about my bear sighting but he was most unimpressed. Again after lunch we set a good pace with a group of riders including Hunter who was all patched up again, but at a much lesser speed knowing we had 80 km to ride and one big pass to climb. We had a quick break in Keremeos and said goodbye to our Veteran cycling and support companions, at least those who were there and then set off on Highway 3. The Similkameen Valley from Keremeos down, is just a marvel of river flats, dry mountains, wine orchards and mixed farms. The highway had a lot of rolls but the trend was downgrade as we were following the river. Then of course all good things had to end. The river turned South for the border (the Americans are threatening to flood this river even into Canada for a power project) and we started our long ascent up the Richter Pass. It doesn’t show as being that long or arduous on the profile but I guess at the end of a long day a multiplier effect kicks in. Also it didn’t help that there was a false summit to be followed by a short descent and then the real summit exposed itself above us. David and John E. and Brian and I were the first ones in town just before 5 pm. John Joyce joined us shortly thereafter and Hunter came in with Mieko and several others. Over the next hour the rest rolled in for a well deserved beer. One sad turn of events is that Sandi who had been suffering from knee pains for the past few months even during training couldn’t complete the full leg due to the increasing pain and discomfort and had to take a ride into town. Sandi is in superb shape but the knee had the best of her. We will have to see how that unfolds and whether she can cycle in the days to come or at least a portion of the days to come. Well it is now 6 am and the troops will soon be awake. My journal is up to date and hopefully I can find a place to put it on the Internet.
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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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