65 Years Strong, But Our Story Is Far From Over 

Sixty-five years ago, a group of determined parents refused to accept that cystic fibrosis (CF) was a death sentence for their children. Today, Cystic Fibrosis Canada stands as a testament to what unwavering commitment can achieve.  

When Doug and Donna Summerhayes brought parents together to “figure out what to do about cystic fibrosis” after their daughter was diagnosed with the disease, kids rarely lived to see their fifth birthday. The Summerhayes rallied people across the country to roll up their sleeves to form what is known today as Cystic Fibrosis Canada to lessen the effects from the fatal genetic disease that targets the digestive system and lungs.   

Today, thanks to groundbreaking research, improved treatments, and game-changing medications like Trikafta, many Canadians with CF are living well into their 40s and beyond. Children born with CF today can expect to live well into adulthood as the median age of survival is now 62. That’s transformational progress. 

Since 1970, Cystic Fibrosis Canada has invested nearly $290 million in cystic fibrosis research and healthcare. It has paid off. Those investments led to the discovery of the gene responsible for cystic fibrosis, in turn paving the way for life-changing cystic fibrosis treatments like Trikafta. Funding also helped develop the revolutionary diets that have been adapted globally and solved malnutrition in cystic fibrosis. We also supported the world’s first device to repair donor lungs, improving transplant outcomes. And so much more. 

Donor dollars also helped the growth of specialized clinics across the country, ensuring that regardless of where someone lives, they have access to expert treatment. The Cystic Fibrosis Canada clinical trial network also ensures our Canadian CF community has access to new treatments, as research teams determine the next best therapy. 

Our advocacy work has been unmatched over the decades. We pushed to make newborn screening standard practice for all babies in Canada, when Alberta led the way in 2006. Since then, Cystic Fibrosis Canada has helped nearly everyone who can benefit from Trikafta gain access to it—for many people, this means dreams have become reality.  

We have also been able to track the changing state of cystic fibrosis in Canada through the Canadian Cystic Fibrosis Registry, one of the world’s longest standing and most complete data repositories for CF. 

So yes, there’s much to celebrate as we ring in this 65th milestone. But here's the sobering truth: many babies born with cystic fibrosis today won't be so lucky. They won’t live to celebrate a 65th birthday of their own.  

Despite all our progress, CF remains a life-limiting disease. Even with the introduction of Trikafta, people are still very sick. Lungs are too damaged. Infections are still hospitalizing Canadians. And too many families still face the heartbreak of losing loved ones far too young.  

Our story is far from over. Every day, researchers are pushing boundaries, exploring new gene therapies and developing new treatments. We continue to push for more affordable access to medications and improved care as the disease changes, supporting families navigating this challenging journey. 

As we look back on all we’ve achieved together, we also recognize the tremendous need still faced by those living with cystic fibrosis in Canada, many of whom are still very sick and others who are facing new needs as they age with CF.  Our next 65 years hold countless untold stories. We don’t have the ending we want or need. Yet. 

Together, we can make it happen. Join us, as we help Canadians live fully, beyond the limits of their cystic fibrosis.