New appeal launches to find better treatments for infections and help ensure no one with CF goes into hospital and never comes home
Going into hospital with an infection is a frightening time for anyone with CF. And the devastating reality is that some people never get to come home.
To launch the Trust’s new appeal and the need to fund research to find better treatments for everyone with CF, we share Chloe’s story.
In 2006, Chloe had just landed her dream job, but despite her passion, drive and determination, a chest infection meant she became very ill again. Chloe, aged 23, went into hospital, but she didn't come home.
Tom and Grace, Chloe’s parents, said: “Chloe was a very bright lassie and academically did very well. We had a normal family life, we’d get the CF out the way, and carry on. Chloe went to festivals when she was older and we would always worry but we knew she needed her independence. She left home at 18 and had a flat with her friend. She was a rebel – she had this stud in her bottom lip and her tongue, and pink streaks in her hair. It’s what teenagers do, she just happened to have CF.
“She was a young leader in the Rainbows and helped out there right up until the end. She loved young children and wanted to be a mother, but it wasn’t to be. She’d have loved her two little nieces. She was quite accepting of her CF but sometimes would say it wasn’t fair. But she had such a wonderful life. We want Chloe to be remembered as she was - a happy, cheerful girl.”
The money raised from this year’s appeal will help fund life-changing research, like the Trust’s Venture and Innovation Awards (VIAs) - short-term projects that make game-changing research possible.
Professor Martin Welch – understanding the strains that stop people coming home
Professor Welch, at the University of Cambridge and his team have developed a laboratory model that can study the effects of how different disease-causing bugs interact inside the lungs, replicating the conditions inside the lungs of people with CF more closely than ever. With new funding, they will use this model to study hard-to-treat strains of Pseudomonas – a common cause of lung infections in people with CF. Find out more here.
Professor Jane Davies – can an MS drug fight the most resistant strains?
Professor Jane Davies, at Imperial College London and her team worked in collaboration with researchers at Aarhus University and a biotech company to show the potential benefits of a drug already being used to treat multiple sclerosis (MS), to increase the effectiveness of antibiotics when used to treat infections. Now further work is taking place with funding from LifeArc, a not-for-profit medical research organisation, to understand how a combination of medicines could be used. To build on these findings, we’ve awarded a VIA to assess the impact of an MS drug against a broader range of CF bacteria. Using the new funding, the researchers will be looking at whether the drug might work on the infection caused by the fungus Aspergillus fumigatus.
One family who have already benefitted from previous research is Bob, Claire, and their young daughter Katy.
Bob’s health had been stable for a long time, however he developed a persistent chest infection which became extremely hard to treat, and Bob ended up staying in hospital for 6 months.
Claire said “I remember him getting a chest infection and having to take an IV drip at home, but unfortunately the infection just wouldn’t go away. Bob was admitted to hospital, and this led to two years of hospitals visits and when it was most severe, Bob had to stay in hospital for six months - it was a very difficult time for us.”
Bob left the hospital but was still reliant on oxygen to support his breathing. Claire wasn’t sure if his health would improve, but thankfully he was offered the chance to trial modulators, and before long was taken off oxygen.
CF continues to make too many lives too tough and too short, and Cystic Fibrosis Trust will not stop until everyone with CF can live a life that’s not limited by their condition. To help Cystic Fibrosis Trust fund more important work, click here.
Our e-newsletter
Sign up for our monthly newsletter to get the latest CF news and research, stories from the CF community, and lots of ways to get involved in our work.