Our amazing supporter Duane McCreadie from Northern Ireland cycled 200 miles from Wicklow to Donaghadee in July this year, raising over £10,000 for the Trust. Here he chats about his fundraising, his 2-year-old son Xander, who has a rare cystic fibrosis (CF) mutation, and his hopes for a future without limits for his little boy.
From developing CFTR modulators and antibiotics to new physio techniques, clinical trials play a vital role in helping ensure people with cystic fibrosis can access the newest treatments being developed. In 2017, we launched the Clinical Trials Accelerator Platform (CTAP) and the CF Trials Tracker database with the aim to create more opportunities for the CF community to take part in clinical trials. Five years (and over 1,000 trial recruits) later, we look at how these platforms have changed the CF research landscape, and speak to people from the CF community about their experience and motivations for taking part in CF research.
The Trust is supporting and enabling the delivery of a broad and dynamic portfolio of world-class research to help ensure every person with CF in the UK can live a long and full life.
Researchers at the University of Cambridge have applied new techniques and methods of scientific analysis to understand more about the serious lung infections in people with CF caused by Mycobacterium abscessus bacteria, part of the NTM group of infections. Their exciting findings have moved us a step closer to being able to treat this infection much more effectively.
The Oriel Yr Aelwyd Hearth Gallery at University Hospital Llandough are hosting ‘You Scrub Up Well’ until 5 September 2022, by artists who have participated in their CF Voices project. The project aims to create a future CF 'service’, which would be able to meet the needs of people living with CF and hospital staff.
We’re delighted to announce the launch of a new Strategic Research Centre opening at the University of Nottingham, which aims to establish the causes of gut symptoms in people with CF. As the research gets underway, Katie Gathercole, who lives with CF and chairs the Patient Advisory Group within this SRC, quizzed principal investigator Professor Alan Smyth about why this area of research is so important, how people with CF can get involved, and the difference it could make to the CF community.
Our latest CF Registry report revealed a rising number of people with CF becoming parents, with over 100 people with CF having a baby in 2021 – nearly double the number from 2020. In this article, we speak to Dr Imogen Felton, consultant in adult CF and respiratory medicine at the Royal Brompton, about a first-of-its-kind antenatal clinic set up at the hospital to support women with CF on their pregnancy journey.
Our highlights from the fifth Cystic Fibrosis Clinical Trials Conference, on the themes of genetic therapies, diversity in clinical trials and working together as a CF community.
We caught up with Gary McNally, Employability Manager at Cystic Fibrosis Trust, to hear more about his role, some of the challenges facing people with CF when it comes to work and employment, and our exciting new programme of employment support, Work Forwards.
