Founded in 1960, Cystic Fibrosis Canada (CFC) aims to end cystic fibrosis by funding research for a cure and advocating for high-quality patient care. Cystic fibrosis (CF) is an inherited disease that can cause severe damage to the lungs, digestive tract, and other organs. It involves uncontrolled mucus buildup in the body, which can lead to nutrient deficiencies, chronic infections, and death in most patients. Cystic Fibrosis Canada states that CF is the most common fatal genetic disease affecting Canadian children and young adults. It currently estimates that more than 4,370 Canadians live with CF. CFC’s main office is in Toronto.

Cystic Fibrosis Canada runs four main programs: Research, Healthcare, Education, and Advocacy.

Research represented 51% of program spending in F2020. CFC’s research funding has resulted in many significant developments in CF research, including the discovery of the CF gene in 1989. In 2019, Cystic Fibrosis Canada funded 45 research projects and 27 post-doctoral or graduate fellowships. Research topics included CF-related diabetes, lung inflammation, and personalized medicine. 

Healthcare programs made up 20% of program costs in F2020. CFC funds a network of 42 CF clinics across Canada. The charity also runs an Accreditation Site Visit program to ensure accountability by reviewing each clinic’s programs on a rotating basis. It visited four clinics in 2019, determining that each provided the highest level of care available for patients.

Education programs were 19% of program costs. CFC maintains the Canadian Cystic Fibrosis Registry, a collection of national CF patient data to measure trends in CF and improve understanding of CF among medical professionals. The most recent report on the CFC registry from 2018 found that 18% of CF patients must travel over 250 km to receive care. Cystic Fibrosis Canada aims to use this data to inform future patient care initiatives.

Advocacy represented 9% of program costs. Cystic Fibrosis Canada runs provincial and national advocacy campaigns to raise awareness and increase support for CF patients. In January 2019, CFC held a one-day forum to bring together patient groups, researchers, and activists to discuss improved personalized care. It also helped develop an eight-part webinar series on CF and family planning.

Cystic Fibrosis Canada is a Large charity with $15.4m in donations in F2020. Administrative costs are 12% of revenues (less investment income) and fundraising costs are 37% of donations. This results in total overhead spending of 49%. For every dollar donated to the charity, 51 cents go to the cause. This falls outside of Ci’s reasonable range for overhead spending, which has been the case for the past three years.

CFC has $8.9m in total funding reserves, of which $94k is donor-endowed. Excluding donor-endowed funds, the charity can cover 81% or nearly ten months of annual program costs with its reserves.

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

Updated on August 17, 2020 by Eric Zhao.