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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
Margaret PDF Print E-mail

 

 

 Sponsor the Stranges

 

Eleven years ago I was dying of Cystic Fibrosis.  My only hope for survival was a double lung transplant. 

December 1st 1999 I received the greatest gift of all, my life saving transplant.  A family, in their darkest moment, was able to look beyond their grief and donate their loved ones organs.  In that decision they saved four people’s lives, mine included

 

I am a 50-year-old Cystic Fibrosis survivor and double lung transplant recipient. I have been able to live an extraordinary life despite living with the devastating disease Cystic Fibrosis.

 

Since I was 21, it has been my mission to give back to the CF community by helping to raise funds to find a cure.  Since my transplant, I also give back to the transplant community especially to donor and donor families who have given life to others through donating their loved ones organs.  Promoting organ donation and transplantation and encouraging everyone to register their wishes to be organ donors are very important. Simply put: Organ Donation Works.

 

That is why my husband Brian and I will be taking to the road, on our tandem bike, to raise much needed funds for the Cystic Fibrosis Foundation and to promote organ donation.

 

We will be riding for those living with Cystic Fibrosis and to honour those who lost their lives to CF.   Isabelle Tonolli a vibrant, sweet teenager who was taken too soon, by CF, will be our guardian angel to whom we dedicate this ride.  We are also riding in honour of all organ donors and their families, who have saved so many lives.

 

So get on board our tandem and help us pedal the two-day ride by sponsoring us for a cause that is near and dear to both of us.

 

Thank you from the bottom of my new lungs.

 

Margaret Benson

“Believe”

 

 

Riding for Hannah

 

Hannah entered this world 5wks premature with what seemed to be mild concerns.  These concerns then grew to major breathing problems and then at 3mths old, the suggestion of Cystic Fibrosis.  When first diagnosed, then 5mths old, her family struggled to come to terms with what this would mean for her.  Even though burdened with many medications, ventilators and physio in a day, her one remaining question is..... why don't the other kids need medicine??  Hannah's understanding of CF now, is more doctors and more medicine.  It only remains to be seen if her bossy, energetic and feisty personality helps her become the doctor she aspires to be.  In the meantime she continues to spend free time dressing up, dancing and playing with her brother and 10 cousins.

 

 
 

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.