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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 going to be a very short post as it is almost 10 pm and we have the toughest climb of the trip ahead of us tomorrow. The Salmon Creston Pass. This is 20 km of 8% grade and the words used by the experienced cyclists is , unrelenting and unending.
Today was also had a tough day, the toughest day for me at least on the trip yet. What we expected to be a relatively easy day turned out to be anything but. The first 30 km. were quite relaxed as we followed the Granby River Valley South to the Christina Lake turnoff. I now call Highway 3 the political highway. If there were no border South of us there would be no Highway 3. Everytime the Highway wants to follow the valley South the border interferes and the road has to turn East and climb over another mountain range. First it was the Cascades over the Hope Princeton, then over the Okanagan Range at Richter Pass and at Anarchist Mountain. Todays flavour of the day was the Monashee Range as once again we turned left from a nice flat valley just to avoid bumping into the American border and headed to Christina Lake. It was all fun and games until we hit the far side of Christina Lake when we started a slow but steady ascent up a creek valley. Unlike yesterday at Midway we got the wrong side of the creek in that we had to climb up the grade instead of following it down. Gradually the grade steepened and what had been 2-3% soon became 4-5% and then 7-8%. This climbing went on for kilometre after kilometre with every curve presenting another long climbing straightaway. Sometimes it would appear we should be picking up speed as it seemed we should be going downhill but instead we had a tough time holding 18 km/hour and then when looking back it became apparent we were still heading up. Finally at one point we crossed a high bridge which gave a long view back down the valley. However this wasnt the summit and it just got steeper and warmer. Finally a group of us including Mark Nassan, Hunter, John Joyce, John Edworthy, Avi Ostry, David Strange, Brian Rose and I came over the Paulson summit at 1535 metres (5500 feet for you Imperialists)and headed for the long ride down to Nancy Green Lake where lunch was planned. Due to a minor mishap with a misplaced car key lunch was a little long in arriving and we had time to soak our limbs in the Lake and rest a little
After a great lunch we headed out again for our second not quite so major climb of the day as we aimed toward Red Mountain, Rossland and finally Trail. We stopped in Rossland for awhile to allow everyone to catch up (some of our group descend with a little more sense and use of their brakes than others). This gave Sandi and Mieko a little time for shopping as it was Leonas birthday today and we wanted to gussy up her bike a little. Six, hairy, 10% grade, winding kilometres underneath Rossland Trail finally braked into view and only one of us overshot the motel and had to climb a few hundred back up the highway. I wont say it was Sandi but if anyone guessed this to be so I wouldnt say they were wrong either. Anyway Sandi and Mieko prettied up Lionas bike with streamers, baseball cards, crepe paper, and a fine purple wig and we had a wonderful presentation in the parking lot. Later at dinner John E. and Sandi with help from everyone else sang a full rendition of the Theme from Gilligans Island which starts Now sit right back and you will hear a tale and goes on and on from there. John knows every word
every word. Okay so we had a few more beer, some champagne and a nice bottle of red, not exactly a training regime but a fitting way to end a birthday nevertheless. That was Day 5. Tomorrow is likely the toughest day on the Tour. Good night and sleep tight.
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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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