Edmonton Cystic Fibrosis Society
"People don't understand what an ugly disease this is. It doesn't just affect the lungs, it's a multi-system disease, affecting other areas like the gastro-intestinal tract. It takes hours of therapy every day just to maintain a basic quality of life, and it's not what most people would consider a basic quality of life."
Katherine Lauzon is the coordinator of Cystic Fibrosis Canada's Edmonton and Northern Alberta Chapter. She's proud of the chapter's history of fundraising, and is excited about where those funds go. "We're dedicated to using funding for research." Research, she points out, has made all the difference in the lives of people with cystic fibrosis and their families, and holds great hope for the future.
First indentified as a disease in the late 1930s, cystic fibrosis (CF) is a genetic disorder that causes a build-up of thick mucus in the lungs making it difficult to clear bacteria, which leads to repeated infection and inflammation that damages lung tissue. Daily physical therapy is necessary to keep the lungs free of congestion and infection.
In the digestive tract, CF makes it extremely difficult to digest and absorb adequate nutrients from food. People with CF must consume a large number of artificial enzymes and vitamin supplements - up to 40 pills per day - to achieve adequate nutrition.
In the 1960s, most Canadians with CF did not live long enough to attend kindergarten. Today, half of all Canadians with CF are expected to live into their 40s and beyond. Since 1989, when Canadian researchers discovered the gene responsible for CF, research has resulted in new treatments that have made leading a normal, active and challenging life ever more possible for those with CF.
Through the Community Spirit Program donation grant, the Edmonton Cystic Fibrosis Society received $25,000 in 2009 and another $25,000 in 2010. "All the donation grant money was put into research," says Katherine. "As a rule we try to use as little as possible of any funds we raise for overhead. We even try to get the promotional aspects of our fundraising events donated."
Research on a CF cure or control is taking place across Canada and around the world. There are some major projects right here in Alberta:
- At the University of Calgary, Dr. Shawn Lewenza is studying the role of DNA in the formation of biofilm, a kind of sludge that harbours bacterial growth in moist environments. His work focuses on medications that could break down the DNA that holds biofilm together, making the bacteria within more vulnerable to antibiotics.
- Bacteria that cause infections are increasingly resistant to antibiotics. At the University of Alberta, Dr. Jonathan Dennis is studying bacteriophages (or simply 'phages'), viruses that attack only bacteria, as a tool to enhance the power of antibiotics.
- Also at the University of Alberta, Drs. Finlay and Wishart are looking at using phages to actually replace traditional antibiotics. "Phages are the new frontier" says Katherine, "with potentially wide-ranging benefits. They could be used way beyond CF to fight many other diseases."
- Although inflammation of the lungs is a natural immune response, it can be excessive in people with CF, triggering damage to lung tissue. At the University of Calgary, Dr. Chris Mody is investigating the inflammatory response mechanism, which may lead to strategies to regulate the response and reduce damage.
In the what-if category, Katherine's answer is no surprise: "A cure or control for CF. Understand that this is really a family disease, since it demands so much to care for a person with CF, from everyone in the family. A cure would mean new life for people with CF, and so many others."