Founded in 1960, Cystic Fibrosis Canada (CFC) is 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, causing destruction and loss of function of the lungs, which eventually leads to death in most 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 54% 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, 30% 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 15% 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.  

Other program costs make up the remaining 1% of program costs.  

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 to 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. Excluding endowed funds, the charity's reserves can cover program costs for 1.2 years. 

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

Updated on June 4, 2019 by Caroline McKenna.