Dr Archie Norman MBE, who was instrumental in establishing the specialist CF centre at Great Ormond Street Hospital (GOSH) and helped to found the Cystic Fibrosis Trust, has passed away.
Martin Smith is the face of the Cystic Fibrosis Trust’s Christmas campaign this year, and the author of the best-selling children’s books, the Charlie Fry Series, which feature an 11-year-old boy called Charlie who has cystic fibrosis (CF). We caught up with Martin about his passion for writing, his journey with CF and his mission to raise awareness of the condition.
Innovation and research, the changes and challenges in life with cystic fibrosis (CF), and the future of therapies… the UK Cystic Fibrosis Conference 2019 (UKCFC) is just around the corner and this is not one to miss!
In the last couple of weeks we’ve been busy reflecting on some of the ground-breaking work that took place under the last research strategy, made possible by our incredible supporters, and looking ahead to where we’re heading with the new one. To whet your appetite for the UK CF Conference from 9-10 September in Birmingham, here’s a closer look at some of the research taking place right now.
Rachael Bass is the Trust’s first Physiotherapy Fellow, based in the Newcastle Hospitals’ CF centre, and she has been traveling around the UK (and across the pond to the USA!) to complete her Fellowship programme and learn more about physiotherapy and cystic fibrosis. Here, she gives us a snapshot of five days in the life of a Physiotherapy Fellow.
A round up of research funded by the Cystic Fibrosis Trust and presented at the North American Cystic Fibrosis Conference (NACFC) in November 2019, including CF registry research on lung function and bone marrow density, and three updates on projects tackling Pseudomonas aeruginosa infection in cystic fibrosis.
As we develop new virtual activities and ways to bring the CF community together, we are asking adults with cystic fibrosis (CF) to tell us what they want and need. Your views can help shape a new series of online events which we hope to pilot in the coming months, mirroring work we have been doing recently for young people with cystic fibrosis. Jacqueline Ali, Head of Information, Support and Programmes, talks about the background to this and explains how to get involved.
Take a look at some useful tips for managing financial pressures around Christmas time from Sangeeta, the Cystic Fibrosis Trust’s Welfare and Rights Advisor, including staying in the know about benefit payment dates, applying for financial help from your energy supplier, and information about the Cystic Fibrosis Trust’s grants and Helpline hours.
