Cystic Fibrosis Canada

About Cystic Fibrosis Canada:

Founded in 1960, Cystic Fibrosis Canada (CFC) is one of the world’s top three charitable organizations committed to finding a cure for cystic fibrosis (CF). The charity also supports and advocates for high-quality individualized cystic fibrosis care and raises public awareness through its education programs. CF is the most common fatal genetic disease affecting Canadian children and young adults. CF mainly affects the lungs, causing destruction and loss of function, which eventually leads to death in the majority of people with CF.

Many of the biggest advancements in CF research, including the discovery of the CF gene in 1989, have been made by researchers funded by Cystic Fibrosis Canada. In F2019, CFC invested $6.1m to fund 45 research projects and 29 postdoctoral fellowships, making up 38% of program costs. Research topics include gene therapy, CF-related diabetes, lung inflammation, personalized medicine, CFTR proteins, quality of life and lung infections. In July 2018, CF Canada launched CFC Accelerated Clinical Trials Network to build capacity to run clinical trials and increase the participation of CF patients in clinical trials.

In F2019, 21% of program costs were allocated toward CFC’s clinical care and advocacy programs. The charity supported 42 CF clinics, awarding each with Clinic Incentive grants for continued professional development and for travel costs to outreach centres. The 42 clinics support 4,300 Canadians across the country. 

Cystic Fibrosis Canada also has Education and Public Awareness programs that make up 11% of program costs. The 2017 Cystic Fibrosis Awareness Month campaign resulted in 12,601 Canadians signing a petition calling for public coverage of Orkambi, the medication used to treat the most common type of CF.

Results and Impact:

Since 1960, Cystic Fibrosis Canada has invested more than $261 million in research, innovation and care of CF. The 2016 Canadian Cystic Fibrosis Registry shows that the median age of survival in Canada is steadily increasing and is among the highest in the world at 53.3 years.

Since 2006, CF Canada has been calling on the Quebec government to adopt newborn screening for early detection of CF. In 2017, Quebec was the last province to commit to newborn screening for CF, and the program launched in spring 2018.

Financial Review:

Cystic Fibrosis Canada is a Large charity, receiving $17.0m in donations and special event fundraising in F2018. Administrative costs are 17% of revenues, excluding investment income. Fundraising costs are 9% of donations and special event fundraising. For every dollar donated, 75 cents go toward CFC’s programs. This is within Ci’s reasonable range for overhead spending. CFC’s funding reserves of $14.0m include $94k in donor-endowed funds. This results in a program cost coverage ratio, excluding donor-endowed funds, of 123%. This means that the charity can cover program costs for 1.2 years using its existing reserves.

This charity report is an update that was sent to Cystic Fibrosis Canada for review. Changes and edits may be forthcoming.

Updated on June 4, 2019 by Caroline McKenna.