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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 20, 2008 Well it’s Friday, the day before our departure and we are ready to go. The fundraising is almost completed and overall the cyclists have raised over $170,000 for CF. Mind you there is still plenty of room for donations so please log onto the website if you want to add to the total. Donate to your favourite rider or just make a donation in general. It would be great if we can crack the $200,000 mark. We have our send-off party tonight to get our final briefing, there are still some mechanics MIA somewhere between New York and Vancouver but I am sure that will be sorted out by tomorrow morning. Fundraising has dominated a fair amount of my time this past month. I want to take this opportunity to thank the amazing group of people who have donated to the Canadian Cystic Fibrosis Foundation and sponsored me on this undertaking. First I want to thank my first major pool of sponsors, that being all our family and friends and friends of family who were linked by email as a result of Eva’s lung transplant last October. I still had this list and the response to a request for donations to this ride was phenomenal. Secondly I want to thank my daughter Eva, the root cause for my involvement here, who very innovatively put together a YouTube video of a training ride up SFU with Sandi, Mieko and Brian (the hill is a lot steeper than it looks on screen) and intercut it with photos of Eva and I over the years as well as a short clip of her before and after the operation. It resulted in a powerful video and donations have come from all over the world. Thirdly I tapped quite strongly into my work related acquaintances and peers and again received very strong support from this group particularly my own company Probyn Log Ltd. Last and certainly not least our neighbours in New Westminster and Queens Park came out in strength to a garden party last Saturday and collectively made a very significant contribution to the cause. Thank you one and all, I feel both humble and blessed by this tremendous show of support. So I am ready to roll. The weather looks OK for tomorrow with very pleasant temperatures and only a 40% chance of showers (that is a good forecast compared to the past three months). Even Osoyoos which is normally in the mid 30’s this time of year only shows a high of 27 when we cycle through next Tuesday. I have a new body (22 pounds and 2 belt notches lighter) and a brand new bike. It is a Cervelo CS full carbon with a compact crankset and a DuraAce gruppo (for the gearheads reading this blog) and is a dream to ride. My son Hunter is one of our support drivers on this trip, which makes me think of a popular credit card advertisement. New bike $4291…new shoes $250…..new cycling shorts $65….Having your son pack your bags and make your lunch…….Priceless! Hee…hee …sorry Hunter. That’s it. I will be posting during our trip. Send an email to
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if you want to post back or log on to my Facebook under the same name. Again a heartfelt thank-you for your support. 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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