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HRH The Prince of Wales meets members of the CF community at St. James's Palace
The Future of Cystic Fibrosis event, which took place at St. James’s Palace, marked the progress that has been made since the CFTR gene that causes CF was discovered over 30 years ago. It also highlighted the challenges still facing people affected by the life-limiting condition, and the importance of continued investment in research and treatments to help those with CF live a life unlimited.
Dr Caroline Elston, Chair of the UK Cystic Fibrosis Medical Association and our Chief Executive, David Ramsden, were joined by people from across the CF community, including clinicians and researchers, who continue to drive forward progress in CF treatment and care.
Jenny Agutter, our ambassador, whose niece has CF, also attended the reception, she said:
“I’m delighted to have attended the reception to mark the progress that has been made since the CFTR gene was first discovered. Cystic fibrosis is a condition that is very close to my heart and I’ve supported Cystic Fibrosis Trust since my niece was diagnosed with CF over 40 years ago. A lot has been achieved in that time and, although there’s still a lot more to do – the future is looking brighter.”
HRH the Prince of Wales, also met Cicely Mathews, age 24 from Romsey. Cicely talked about what it’s like to live with CF and her hopes for the future. She said:
“It is fantastic to see cystic fibrosis being recognised by HRH The Prince of Wales. I think people forget that living with a chronic illness like CF is like having another full-time job – we’re constantly managing it and never have a day off.
“I’m so happy that other people with CF can now access drugs like Kaftrio, but it’s bittersweet – these drugs don’t work for my type of CF, and it feels like everyone’s at a party I haven’t been invited to. Although modulators aren’t a cure, I’m hopeful that there will soon be a drug that targets my mutations, but I always wonder, how long that will take? What state my health will be in? Will I even be alive? At the moment I’m just trying to live a ‘normal’ life – I hope that one day the burden of CF will be reduced for me, so that I can live my life to the fullest.”
“It’s an honour to have met with our Patron, His Royal Highness, to showcase the work of the Trust, and share the experiences of people living with the condition. At Cystic Fibrosis Trust, we are committed to funding vital research, improving care, and raising the voices of the CF community. While more and more people now have access to effective treatments, these don’t work for everyone and are not a cure. We must now redouble our efforts to find new treatments by investing in research, and we won’t stop until everyone with cystic fibrosis can live a life unlimited.”
David Ramsden, Chief Executive of Cystic Fibrosis Trust
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
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