One Step at a Time Against Cystic Fibrosis

Drazen Seslija

On Sunday, May 31, 2026, the “Make Cystic Fibrosis History” Walk took place in the Outaouais region at Dalton Farm Park in Gatineau. The “Make Cystic Fibrosis History” Walk is a national event organized by Cystic Fibrosis Canada to raise awareness, celebrate the resilience of people living with the disease and their loved ones, and raise funds. Once again, this year, a committee of volunteers organized the event in the Outaouais region.

Cystic fibrosis is a genetic disease that primarily affects the respiratory and digestive systems. It causes the production of thick secretions that prevent the lungs and pancreas from functioning properly, among other things. Several variants of the disease, ranging from mild to severe, affect those living with it in different ways.

A lively atmosphere: face painting, food, music, and much more

Upon arrival at Parc de la Ferme-Dalton for team registration for the walk (including individual participants), at least five teams were formed. On-site, there was no shortage of fun activities set to a mix of summer songs playing one after another, including face painting, Frisbee games, balloons and balls available to play with, food (candy, cookies, pizza, among other things), warm-ups, and much more! Participants then walked along routes ranging from 1 to 4 kilometers.

Fighting Cystic Fibrosis

Maureen, the event’s lead organizer and coordinator in Gatineau and mother of Isa-Maude, who has cystic fibrosis, spoke to the Bulletin about the solidarity within the community in the fight against cystic fibrosis and the importance of getting involved. “At first, when our daughter was 2 years old, we didn’t know she had cystic fibrosis; we found out later, and since that day, we’ve been involved with the foundation fighting cystic fibrosis. It was good for me to get together with other parents and families who are going through the same thing we are. When our daughter was diagnosed, we were told her life expectancy was 35 years, but now, with advanced research and evolving care, the median age is 56. Our daughter has been taking a medication that’s been available for at least three years now—Trikafta—and her health has improved significantly. Before, she had flu-like symptoms from September to April. She used to take antibiotics at least three times a winter; now she no longer takes antibiotics, and her weight and overall health have improved, which is great. Maureen points out, however, that Trikafta is very expensive, costing around $300,000 a year, Of course, financial support is available through certain insurance plans, such as the Régie de l’assurance maladie du Québec (RAMQ), and other programs in Quebec, subject to certain conditions, but it remains a high cost, and not all human genes are compatible with the medication. “That is why it is important to talk about it, to raise awareness of the disease, to continue our outreach efforts, and to raise funds so that research can continue, to improve care, and eventually find a cure for a complete recovery.”

Sonia, Charlie’s mother, who has cystic fibrosis, praises the support of everyone who has joined the cause to fight cystic fibrosis: “He’s our only child. He’s growing up just fine; he’s a normal child. We’re being treated at the Children’s Hospital of Eastern Ontario (CHEO); we’re getting excellent care, and the medical team is very dedicated. There are many fundraising activities; it takes time, but we see the difference it makes in our daily lives, especially with the discovery of Trikafta, a new medication approved by Health Canada that makes a big difference—things are moving forward. New treatments are essential,” she explained.

Every donation counts

As Maureen mentioned, every donation counts and makes a huge difference in the fight against cystic fibrosis—from research to care aimed at improving the quality of life for those affected, and toward one day finding a cure that will allow people with cystic fibrosis to fully recover.

To donate, visit the Gatineau Walk website at the following address:

https://marche-fibrosekystiquecanada.crowdchange.ca/128167/donate