Cystic Fibrosis Trust launch new fundraising appeal to help people live healthier for longer

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Cystic Fibrosis Trust has today launched a new appeal to raise vital funding for research to help people with cystic fibrosis live longer and healthier lives, and better understand why they are at higher risk of other serious illnesses including heart disease, cancer, and diabetes.

Spring cash appeal leafletData from the UK CF Registry 2022 indicates that almost a third of people with CF over the age of 10 will develop cystic fibrosis diabetes (CFD) . The chance of developing CFD increases with age. People with CF are also five times more likely to develop bowel cancer than the general population, and this risk increases to 30 times more likely following a transplant. However, the risk of an individual with CF developing bowel cancer still remains low.


Research has also found that people with CF and bowel cancer had an average age of diagnosis of 52 years, which is significantly younger than in people without CF, which is an average of 73 years. 


Urgent research is needed to understand the cause of this increased risk, and why it affects people with the condition so heavily. Cystic Fibrosis Trust’s new appeal aims to raise £750,000 to help fund a new Strategic Research Centre to investigate the link between CF and bowel cancer and look to use existing drugs to reduce cancer risks. Preliminary research has found that this increased risk may be due to a faulty CF gene, increased inflammation in the body and bowels, and the use of high and low fat diets to manage CF.


Janine, whose son Alan passed away from bowel cancer in 2020, has shared her and Alan's story for this new appeal to help raise awareness of cystic fibrosis and the increased risk of bowel cancer.


Janine lost her son Alan to bowel cancer when he was 39, shortly before his 40th birthday. Alan had cystic fibrosis and dealt with digestive issues and stomach problems all his life, often being admitted for bowel blockages and being unable to keep weight on. In his twenties Alan was in and out of hospital with infections and persistent lung infections, though became much healthier after visiting after signing up to the gym and visiting a nutritionist. After falling ill on holiday in 2018, Alan was diagnosed with bowel cancer.


Before he was diagnosed, he was in the best shape of his life. He looked amazing and I was certain he’d outlive me. We had such big plans for his 40th birthday. Part of me feels guilty that I didn’t keep researching his CF and cancer risks like I did all those years ago when he was first diagnosed. We all got tested for anything genetic and got the all clear – but it was his CF that caused his cancer. There needs to be more research into CF related cancers and better screening.


The new Strategic Research Centre is being led by Professor Steve Renshaw, a Cystic Fibrosis Trust funded scientist, respiratory physician and Head of Medicine at the University of Sheffield. 

It’s becoming clear that as people with CF get older, they have an increased risk of developing other life-threatening diseases such as heart disease, cancer, and diabetes and we need to better understand why this is. There is a clear link between cystic fibrosis and an increased risk of bowel cancer and if our lab studies prove our approach is effective, we hope to launch further research to test existing drugs targeting these pathways in a clinical trial. This could mean in future we have a simple and easily affordable treatment to help people with CF spend more time with their loved ones.

Professor Steve Renshaw

We hope that this new research can address one of the most pressing factors of an aging CF population, which is the increased risk of cancer and other life- threatening diseases. We urgently need support to help raise funding for this new research, which we hope will one day help us prevent the risk of bowel cancer in those with cystic fibrosis, and create a future without the limits of CF.

Dr Lucy Allen, Director of Research at Cystic Fibrosis Trust

Find out more about cancer and CF here.


Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11, 148 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

Your donations help us fund vital research. Donate today to help everyone with CF live a life unlimited. 

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Read more about the Strategic Research Centre

Our new Strategic Research centre, led by Professor Steve Renshaw aims to understand why people with cystic fibrosis are at a higher risk of bowel cancer, and to investigate ways to reduce this risk.

Read about current research into bowel cancer and CF

The current research into bowel cancer and CF suggests people with CF are five times more likely to develop bowel cancer than the general population.

Reach out to our Helpline

While the risk of of an individual with CF developing bowel cancer still remains low, we understand this can be concerning for some. Please reach out to our Helpline if you need to talk. 

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