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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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Bill Markvoort\'s Blog
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Saturday May 30, 2008
Saturday morning at 9 am found seven of us walking across Peace Arch Park toward the American border for a days cycling in rural NW Washington State. John Joyce led the contingent having made the trip many times before with his Altus Cycling Club. Leona and Max brought Chris Blohmke with them (who had enjoyed a successful fundraiser at the CocoaNymph shop the previous evening) and I showed up in the company of Sandi Saunier and Mieko Rennie my usual cycling companions.
Crossing the border by bicycle is better than having a Nexus card ( definitely a low risk group). NW Washington state once you get a few hundred feet away from the I5 is a lot quieter and rural than the ever busy Lower Mainland. We took the Blaine turnoff right past the customs booth and then right again a few kilometers (oops..miles) on heading Birch Bay. A beautiful ride along the bay in even better weather. I have lived in BC since 1974 and I had never visited Birch Bay. Go figure. So our bike treks are having benefits way beyond CF fundraising. Benefits such as having two extra belt holes available and enjoying the company of very interesting like-minded people.
Its a rural route with the odd rolling hill. We cycled past the Alcoa plant and then the refinery at Cherry Point before entering the Lummi Indian reserve and turned right at the casino and headed down Haxton Way to the waterfront and ferry terminal to Lummi Island. The IR is quite undeveloped and reminded me of what rural America may have looked like 50 years ago.
We then made the long cycle on the Bellingham Bay waterfront back up the peninsula towards Bellingham. Fantastic cycling and Chris and I engaged in a two man breakaway that left me quite winded 8 km. on. Lots of eagles feeding at the shoreline on the low tide.
Lunchtime found us at the market in Bellingham for an extended stay at the pizzeria. Cycle hard
eat big pizzas. More benefits again. John finally corralled us and we headed in the reverse direction although we cut of the final loop to Birch Bay. 135 km of sunny cycling. Great group, great ride
.thanks John for being our guide.. even though you never did get paid.
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Saturday, May 24 saw Sandi Saunier, Mieko Rennie, and I meet Brian Carlson at his home on 173’d Street in North Surrey for a very early coffee and croissant before starting a days riding. We finally had a glorious day in the offing with temperatures promised (and delivered) in the high 20’s and even low 30’s farther up the valley. Which is where we intended to go. This was the big ride day according to the training plan assiduously followed by Sandi and Mieko. The feeling here is that they are probably the only ones on this plan. Sandi met David Speert in a ride last week, one of only a few riders left in town over the long weekend. He asked her how her training was going and Sandi told him about all our trips up SFU and Cypress and Seymour. He stated that she was definitely ready for the hills and that all she needed now was some T.I.T.S. Needless to say Sandi was somewhat taken aback having only met David for the first time twenty minutes earlier. Cycling back up to him she asked him to elaborate. You know he said TITS, Time In The Saddle. Anyway that was our mission today. Time in the Saddle. We rode South somewhere along Glover Road following Brian’s road knowledge and eventually ended up on 0th Avenue right beside the border. A great cycling route because there are few four way intersections. And for a diversion you can always wave at the cameras and border vehicles on the other side of the ditch. At Abbotsford we hooked into Vye Road and headed direction Cultus Lake. We made it as far as Yarrow bucking a strong down valley headwind and had lunch in the park. Of course on the way back the wind died down and eventually switched directions so we faced headwinds on the final leg home. We cycled up Highway 11 into Abbotsford and then toward the Mission Bridge. At Matsqui we cut off this busy road and got back on some quasi country roads (with some very large gated estates). A bit of up and down riding with one swooping descent. River Road past Derby Reach is quite scenic as is the town of Fort Langley in full touristic mode on a sunny Saturday afternoon. A quick stop for an ice cream and we cycled the final leg back to Brians house. 170 km at a 25 km pace. Lots of T.I.T.S.
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Some photos from our Tour de Starbucks Day
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Read more... [More Cypress]
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Page 3 of 4 |
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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