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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
Alkarim Jina PDF Print E-mail
Alkarim Jina

I recently rode up Coleman Valley Road on the Sonoma coast, part of the Tour De California Preview route. The legs screamed, the lungs scorched and the crank whined:" stop, pain, stop, pain". The task ahead finally dawned upon me - over 800 miles and three mountain ranges! Coleman's 1200 ft in elevation paled in comparison to the daunting Rockies. "Those are hills, we have real mountains in Canada" I would often boast to my local friends. Images of the few Cystic Fibrosis patients I had seen in the ER over my 16-year career flashed through my mind - anxious, exhausted, muscles fatigued, working harder just to breathe. Perspective fell into place.

This year I am part of the Southern contingent on the GearUp4CF ride. I'm a Canadian who has lived in San Francisco for close to 10 years. A reformed injury prone runner (read boomeritis), I have been riding in earnest for two to three months. Every time I sit down I'm reminded of the learning curve!

Born in Tanzania, East Africa, I immigrated to Edmonton, Canada in the early 1970's, partly in response to the Idi Amin expulsion of Asians in Uganda recently portrayed in "The Last King of Scotland" and "Mississippi Masala". I am a part of the grateful Ismaili Community, known in Canada and worldwide for their charitable works such as the Aga Khan Foundation A graduate of University of Alberta's Medical School and McGill's Family Practice Residency, my interest in Medicine has been Native American health. I've had the good fortune to work in diverse places such as Chisasibi, Mistasini and Kujuarapik in the James Bay /Hudson Bay region; to the Chickasaw Nation in Oklahoma; from Inuvik, NWT in the Western Arctic, to Lourdes de Blanc Sablon on the Quebec/Labrador border (Montangnais); West Vancouver Island to Navajo Nation in New Mexico and Arizona; Turtle Mountain Chippewas in North Dakota to Lakota Sioux in Pine Ridge and Rosebud, South Dakota; Central Montreal to Central Oakland amongst others.

My most recent incarnation was covering the ER at the Crow Northern Cheyenne Hospital In Crow, Montana, nearby the Little Bighorn Battlefield of Custer's Last Stand Fame. I recall the optimism that flourished when the gene responsible for Cystic fibrosis was discovered, 1989/1990 at the Toronto Children's Hospital. Great strides have been made in the ensuing 17 years with the life expectancy increasing to over age 36, but we still talk about "living with Cystic Fibrosis". One in 25 people of European Descent and one in 29 people of Ashkenazi Jewish descent is a carrier of a CF mutation.

I am riding to fulfill that optimism of 1990, celebrate life and express gratitude. My goal is to raise $5000. Help power me up those mountains! Thanks to Julie Brown, Valdez Hill, Steve Wedgewood, Chris Thomas and other great Aids Life Cycle Training Leaders for helping me train. Thanks to Robin Abrams and the Santa Rosa Cycling Club "A's" for the rides and company!

Sponsor Alkarim Jina
 

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.