Inside a Sixty Five Roses Club event
The Sixty Five Roses Club is made up of our wonderful supporters who give a minimum of £1,000 annually to help the Trust fund vital projects that support people with CF and their families when they need it most.
Members of the Club get access to bespoke events, including the Club’s annual reception, quarterly Sixty Five Roses Club newsletters with updates on the work your donations have helped to fund, acknowledgement in the Trust's annual Impact Report, a rose pin badge and a personal contact at the Trust who will keep you updated with all the exciting ways your money is helping to make a difference for people with cystic fibrosis.
Our Chief Executive David Ramsden kicked off the Sixty Five Roses Club event. He spoke to our members about recent activity at the Trust, including our prescription charges hand-in, the financial challenges currently facing those with cystic fibrosis, and the ongoing research to help ensure everyone with CF can access the treatments they need.
David introduced our three key speakers: Dr Belinda Cupid, Senior Impact Adviser at the Trust who updated members on the recent James Lind Alliance research priority refresh; Dr John King, who spoke about his research into using dogs to detect Pseudomonas aeruginosa lung infections; and Jamie Fox, who ran the London Marathon last year shortly after a lung operation due to his CF.
Dr Belinda Cupid, Senior Impact Adviser at Cystic Fibrosis Trust
Belinda spoke passionately about the recently updated CF research priorities and how they will guide future research into CF.
Five years ago, the Trust worked with the CF community, the James Lind Alliance team at the National Institute of Health and Care Research (NIHR) and researchers at the University of Nottingham, to find out the top research priorities of people with CF, as well as their families, carers and CF teams. These priorities have helped us decide what research we fund, and they have allowed doctors and scientists to focus the direction of their studies.
Belinda explained how five years on, the CF landscape looks very different, with access to CFTR modulators and improved health of those with CF meaning that those research priorities may not be so relevant anymore.
So, in 2022, the partnership was re-formed and a priority refresh project called QuestionCF was launched, asking the community for their views on what the research priorities for CF should be.
Over 1,500 people took part, and the refreshed research priorities included four areas from the first project that were still relevant to people with CF, with new themes around access to and the effect of CFTR modulators on the CF community, gastro-intestinal symptoms and treatments, the effects of aging, and genetic therapies, among others being raised.
Belinda updated the Sixty Five Roses Club on the exciting next steps for the priority refresh and how we will be working with researchers and the CF community to address the top 10.
If you want to read more about the priority refresh project and find out exactly what the ten research priorities are, you can visit our research priorities page.
Dr John King, Clinical Research Fellow at Imperial College
John is a Clinical Research Fellow in Professor Jane Davies' research team at Imperial College in London. He joined us to speak about his research, into using medical detection dogs to identify lung infections in people with CF. John’s talk was especially relevant as the most recent James Lind Alliance priority refresh found that ‘What is the best way to detect lung infection when there is no sputum present, eg, children and those on modulators?’ was the second highest priority.
John spoke about the difficulties in detecting Pseudomonas aeruginosa infections when collecting a sputum sample isn’t always an option (in young children or adults taking Kaftrio, for example). With two out of three adults with CF having persistent Pseudomonas aeruginosa chest infections, which can lead to permanent lung damage and reduced lung function, John spoke about the need for alternative detection methods to improve early detection of the infections.
He spoke about his research, adorably named Paws for Thought, which investigates the use of dogs to detect lung infections in people with CF. The aim is to develop a method of testing that everyone can have access to regardless of whether they can produce sputum. With funding from a Trust Strategic Research Centre grant, the study is developing a method of non-sputum-based collection, suitable for home testing.
John also showed supporters some very cute pictures of the dogs; Jody, Oakley and Pru are all Labradors who have been trained to detect the lung infections in partnership with the charity Medical Detection Dogs.
The study has shown that the use of dogs to detect lung infection is highly successful and a positive move forwards for research. However how to collect a non-sputum based sample is still a work in progress. John concluded by saying that research is still very much moving forwards in this area and there is definitely a future for using dogs to detect infections.
Jamie Fox, London Marathon runner
Our last speaker at the event was Jamie, 37, who spoke to us about his experience running the London Marathon last year. Jamie has cystic fibrosis and was diagnosed at six months old. He talked about deciding to sign up for the marathon, sharing how his CF motivates him to do impossible things and how running the marathon had been on his bucket list since 2012.
Training for the race was difficult and Jamie admitted that there were days where he really struggled, but that he still really enjoyed the focus and the challenge. He remembered how race day itself was an amazing experience. Every single photo of him on the actual day, Jamie is smiling and happy. He didn’t listen to music at all because the atmosphere, seeing all the other Trust runners, and the CF supporters and cheer squads was so amazing. When he finished the race he couldn’t sit down or bend his knees but being met by the cheer squad was amazing and surreal. Jamie finished by speaking on his upcoming Ultra IronMan, which is taking place in August 2023.
The event was wrapped up with a Q&A with our members and our speakers. Thank you to everyone who attended or spoke at the event.
If you’re interested in joining the Sixty Five Roses Club, you can find out more on the Sixty Five Roses Club webpage, or email [email protected].
