How to help fight cystic fibrosis, a disease so common yet so little known

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      The month just past has been a month of raising public awareness in Canada about a disease called cystic fibrosis.

      It may have passed by without you even being aware of it. One of the reasons for the illness’s seeming obscurity—even though it is the most common inherited fatal disease in the country affecting young people—is a lack of funding and other resources to get the message out.

      Disease's multiple effects

      One would think that might not be a problem with an inherited condition that affects so many people and has so many potential effects on the lungs and the digestive systems of those affected (it can even impair reproductive ability, cause a unique type of diabetes, and be responsible for liver, gallbladder, pancreas, intestinal, and eye damage, among other complications).

      That relative anonymity is one of the reasons for CF Month: raising funds, along with awareness, in order to educate people about a disease so ubiquitous that any crowded city bus probably has at least two passengers carrying the gene responsible. The month concludes this Sunday (May 31) with the Carstar’s Great Strides Walk, the major fundraiser of the year for Cystic Fibrosis Canada.

      Local fundraising walk Sunday

      Locally, the walk takes place in Queen’s Park in New Westminster (see here for details on attending or donating).
      Because CF—as a cause, volunteer avenue, or fundraising and research opportunity—lags well behind “major” illnesses like cancer and heart disease in terms of public perception, it doesn’t have the huge administrative bureaucracies and physical infrastructure that need to be financed and maintained. (Of course, that means CF only gets a small fraction of the research funding as well.)

      Great CF advances over the years, more to come

      As a result, though, your contributions, however small, arguably go much further in comparison with regard to impact on research for a cure or control of CF.
      Amazing strides, “great strides”, have taken place over the past few decades in terms of scientific understanding and control of the disease, including identification of the gene responsible for CF and a national median age of survival that is just over 50 years of age, although too many young people still succumb to the many physical manifestations of CF. Only 40 or so years ago, a child with cystic fibrosis was lucky to survive until kindergarten.

      Major uses of donations are investing in research and ongoing improvements in CF patient care, including access to life-changing (and potentially life-saving) medications and advocacy for initiatives like universal newborn screening programs.

      Millions goes straight to research

      CF Canada’s major donors this year, and others, include Carstar, Siemens, Vertex, and Kin Canada, and their contributions and those from people like you will fund more than $5 million worth of innovative research projects, training awards, and partnerships aimed at improving the quality of care received by CF patients, more than 60 percent of whom are now adults, an amazing advance after only a few decades of study.

      Please think about donating to CF Canada’s Carstar’s Great Strides Walk this Sunday, or go here to see how you can help in other ways (of course, you can donate any amount at any time of the year). For local opportunities to fundraise, see here for information on the upcoming GearUp4CF cycling events that take place in the Lower Mainland and the Interior.

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