Cystic fibrosis: the unknown, and most common, fatal inherited disease in Canada

A low profile makes it tough to fundraise, but donors get real bang for their bucks

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      The opportunity to do something that really makes a difference doesn’t come around all that often in our lives.

      Consider the fight against serious illnesses like cancer or heart and lung diseases. There are multiple fundraising walks and gala events to which you can contribute your time and money, and they are all worthy causes.

      But because of their increasing prevalence in society and the fact that almost everyone has been touched—personally or through a family member or friend—by these diseases, they tend to gather the lion’s share of attention, energy, funds, and scientific research.

      "Big" diseases get the big money

      Those causes also have, by far, the most money to put toward educational outreach and publicity.

      Then there are the diseases that--despite the best efforts of those afflicted, their loved ones and friends, support organizations, and dedicated medical and research personnel—seem to fall through the cracks in terms of public awareness.

      Cystic fibrosis is one of them.

      Cystic fibrosis affects more people than you think

      Although it is the most common inherited fatal disease in Canada, and even though in your average crowded city bus there will be two people carrying the gene responsible for CF (and even though, within your immediate or extended family or circle of friends and acquaintances you probably are close to someone with CF), the average person doesn’t know much about the illness and its effects.

      It is a disease that affects multiple organs to varying degrees, but its most serious impacts are on the lungs and digestive system as the result of a chronic internal buildup of thick mucous. (If you want to cut to the chase about how you can help--really help--go to the bottom of the article for a link to CF Canada's Vancouver branch.)

      Afflicted often appear healthy

      Because of the insidious and cumulative nature of CF and its internal ravages, sufferers often don’t show external signs of the seriousness of the disease.

      Paradoxically, at least between the frequent hospitalizations, those with CF appear to be the picture of health. Another thing most people don't see are the multiple, sometimes dozens, of medication doses taken every day just to stave off infections and be able to digest foods.

      But it’s the accumulation of scar tissue on those infection-prone lungs that, ultimately, necessitates consideration of life-saving lung transplants.

      Sadly, this drastic procedure is not always an option, or successful, or even available to all CF patients.

      Verge of a breakthrough?

      The good news is that, over the past few decades, the development of digestive enzymes, antibiotics, special vitamins, and targeted physiotherapy, among other things, has significantly extended the lifespan of those born with CF, although many afflicted individuals still succumb to the malady at far too early an age.

      One drug, known as Kalydeco, shows wonderful promise and may even be a lifesaver, but it only works for about four percent of those with CF. (There are 1,900 mutations of the gene that causes CF.)

      The struggle is still ongoing with some provinces to assure funding for the very expensive drug, but try telling those 120 or so Canadians for whom the therapy works that the effort to raise funds for research isn’t worthwhile or won’t pay off.

      Success story raises hopes

      They are the living—living!—proof of the effectiveness of persistence, vision, and generosity of both compassion and finances.

      Currently, trials are ongoing to test a version of the drug that might be of value to the other 96 percent, but scientists and those with CF are not letting go of their vision of the ultimate reward of their long quest: a cure for cystic fibrosis.

      Which brings us back to the how the average person can help make a difference.

      Great Strides walk is a chance to help

      The month of May is CF awareness month in Canada, and on May 25, Cystic Fibrosis Canada holds its annual, and largest, nationwide fundraiser, the Great Strides walk.

      Last year, the Lower Mainland Great Strides walk raised $165,000. Nationally, the walks generated more than $3.2 million.

      Those amounts sound large, and they were a fantastic affirmation of the unflagging energy and enthusiasm of those involved, but they pale by comparison to the money raised by the huge organizations behind some other annual fundraising campaigns.

      Bang for your buck

      But just consider what such relatively small amounts have done so far in supporting those with CF.

      No matter how small or large your donation, you can be sure the majority of your contribution is going to necessary, possibly critical, ongoing support, education, and research.

      Whether you decide to sponsor an individual Great Strides walker, a walking team, or want to become a “virtual” walker yourself (or just want to make a tax-deductible donation to CF Canada anytime), this is the time to do it.

      Register to walk or sponsor a walker

      The Lower Mainland Great Strides walk takes place in a week, on Sunday, May 25, in Queen’s Park in New Westminster. Go to the Great Strides website to get all the information you need. You can register as a walker so you can collect donations yourself, or you can donate to the team of your choice.

      Remember, it’s not often you can make this type of contribution and know that it isn’t going to be mostly eaten up by a vast administrative bureaucracy.

      Think of it as getting some real bang for your (charitable) buck.

      And know that it is helping someone close to you or close to someone you know—even if you don’t know it yet.