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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
Day 1 White Rock to Harrison PDF Print E-mail
We are now safely in Harrison Hot Springs 112 km from our start in White Rock this morning.The Kinsmen treated us to a wonderful steak and chicken dinner, wine and beer included after also feeding us at lunch in Mission earlier in the day. We met at White Rock at 8:30 this morning, both the Jasper and Banff groups are riding together for the first 2 and a half days so it was a collection of 30 cyclists, four vehicles, many family and friends and a few cycling friends to send us off and ride with us to the Albion ferry. Thank you, Jay and Colin, Lutz and Gord for being there to give us support. Even the mayor of White Rock was there to give us an official sendoff. Finally out of the chaos of packing bags, photo opportunities with family and friends, last minute paperwork, etc, order descended and by 9:30 we wheeled out onto 8th Avenue, towards 200th Street. Well within 10 minutes my game plan had gone out the window. Instead of settling into a 25-27 km pace as I had planned to do, as this after all is a marathon undertaking, I got caught up in riding along with the Big Dogs, James Z, both Chris’s, David, Simone, John Sullivan, Jen and Hilda, mostly in other words the Veterans Group. John Edworthy and Brian Carlson and I hung on for dear life as the peloton moved along at 35 km+. At this pace the Albion ferry wasn’t far down the road. Again on the North side of the river we set a strong pace and arrived in Mission at 11:30. There the Kins clubs had tables and tents set out and a wonderful lunch. The ride after lunch was relatively uneventful but we did encounter headwinds and a pell-mell descent of the hill just past the Harrison River where I very nearly took out both Chris Kvan and myself as I could not hold my turn in the steepest corner of the descent. All went well but lessons were learned. Chris is from Boston and rides with his brother David who helps Chris with his physio, because Chris has CF. When we slow down or stop he has the telltale CF cough but his aerobic capacity is huge and he was in the lead group all day long. Very amazing for all of us but particularly for me as the father of a CF child. Check out Chris’s bio as he also races back East. Everyone is safe and sound but tomorrow is a huge challenge as we climb the Hope Princeton and add on around 130 km. See you tomorrow if I am not too tired to post. Bill
 

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.