Driving the cystic fibrosis story in Canada

A story of outstanding progress

Since we were founded in 1960, CF Canada has worked with healthcare professionals and our passionate community to dramatically change the CF story for the better. Here are some important milestones. 

1960

Cystic Fibrosis Canada is established by CF parents Doug and Donna Summerhayes  

1962

First research grants are awarded to Dr. Morley Lerzman in Winnipeg and Dr. Victor Marchessault in Montreal.  

1964

Shinerama, a post-secondary school fundraiser, launches. To date, Shinerama has raised approximately $29 million for cystic fibrosis research and care.  

1965 - 1967

Cystic Fibrosis Canada’s annual research grants and awards competition officially launches. The clinic Accreditation Site Visit program begins to share best practices and ensure consistent high-quality care across Canada.  

1969

First cystic fibrosis clinic for young adults opens in Montreal.  

1973

Canadian Cystic Fibrosis Registry is established.

1981

Association québécoise de la fibrose kystique is founded by the Mouton Family.

1987

Kin Canada formally adopts cystic fibrosis as a National Service Project and, to date, has raised over $52M for Cystic Fibrosis Canada.

1988

The world’s first successful double-lung transplant for a person with cystic fibrosis takes place in Toronto.  

1989

The cystic fibrosis gene is discovered by Cystic Fibrosis Canada-funded researchers in collaboration with the U.S. Cystic Fibrosis Foundation.  

2005 - 2007

The national Walk To Make Cystic Fibrosis History launches, which has since raised over $41 million. Cystic Fibrosis Canada successfully advocates for cystic fibrosis newborn screening (NBS) in Alberta. Today, all provinces have cystic fibrosis NBS.  

2009

The Clinical Fellowship Award is introduced to encourage cystic fibrosis training for medical doctors. To date, 16 Clinical Fellows have received the award and all have gone on to work in a CF clinic.  

2010

Cystic Fibrosis Canada persuades Health Canada to recommend pancreatic enzymes as “prescription-requiring drugs,” saving many people with cystic fibrosis about $20,000 a year.  

2014-2016

Cystic Fibrosis Canada successfully advocates for public drug coverage of Kalydeco®. 

2016

Cystic Fibrosis Canada invests in Laurent Pharma for testing of Lau7b, a cystic fibrosis drug that targets inflammation and resulted from 10 years of Cystic Fibrosis Canada funding. CF Canada publishes three papers in peer-reviewed academic journals. 

2017

Quebec becomes the final province to implement newborn screening for cystic fibrosis. Today, 66% of new cystic fibrosis diagnosis are discovered through newborn screening across the country.   

2021

All provinces and territories fund Trikafta for 12+ with at least one fdel508 mutation.  

2022

All provinces and territories fund Trikafta for 6+ with at least one fdel508 mutation.

2023

Health Canada approves Trikafta for 2 to 5-year-olds with at least one fdel508 mutation.

2024

• Some provinces and territories announce funding of Trikafta for 2 to 5-year-olds. 
• The development of national Cystic Fibrosis Standards of Care begins. 
• Cystic Fibrosis Canada supports 42 accredited CF clinics serving over 4,400 Canadians with CF.
• Health Canada approves 152 genetic mutations to access Trikafta.
• Median age of survival is 60.

All of the above happened for and because of our extraordinary community.

For the latest facts and figures. see our Impact Report and Annual Data Report.