This year, our annual UK Cystic Fibrosis Conference (UKCFC) will be held entirely online for the first time, on Wednesday 12 May 2021. The conference is an informal opportunity for the CF research community to share their results, generate new ideas and spark interest in new collaborations. Read on to find out about some of the exciting research being presented at UKCFC this year.
When Tim was diagnosed with cystic fibrosis (CF) in 1971, his parents were told he would only live to his teenage years. Instead, he celebrated his 50th birthday earlier this year. Tim, who has the double Delta F508 mutation, works full time as a Communications Manager in South London, where he lives with his wife, Katie, and 13-year-old son, Felix. In this blog, Tim takes a look back on how CF treatments have evolved over the last 50 years and reflects on key moments that changed his life, including cross-infection risks and Kaftrio.
Here, the UK CF Medical Association (UKCFMA) gives feedback on the monitoring of data collected through the UK CF Registry about the number of people with CF who have had coronavirus (COVID-19). It also advises how people with cystic fibrosis and their families can help minimise their risk of COVID-19.
Transition from paediatric to adult care is different for everyone with cystic fibrosis (CF). Cicely's transition didn't quite go to plan but here she reflects on the experience and the great work she has done with her new CF team.
Emma was due to take part in her third Great Strides 65km in 2020, but when the event was cancelled due to coronavirus (COVID-19), she found a virtual way to complete the walk. Emma has two sons, including Chester (age five), who has cystic fibrosis (CF). Here she shares her experience and her tips for people joining our new virtual event, Great Strides, My Way.
Becky Kilgariff, Head of Information, Support and Programmes -
As we mark a year since the first shielding advice was announced, Becky Kilgariff, our Head of Information, Support and Programmes, takes a moment to reflect on how the pandemic has affected people with cystic fibrosis (CF). Thanks to your incredible support, the Trust has provided information and help to the CF community throughout this difficult year. As we approach the end of another period of shielding, we recognise there may be mixed emotions including some anxiety and uncertainty so Becky also gives an update on our plans to ensure that you continue to have the support you need.
For the last three years, we have been asking the cystic fibrosis (CF) community for their thoughts on clinical trials via an annual survey, to understand the opportunities available and people’s perceptions of taking part. Luci O’Reilly, Clinical Trials Involvement Coordinator, talks through the results from the 2020 survey, the bigger picture emerging and what the future may hold.
To celebrate World Social Work Day, we’re spotlighting the work we are doing at the Trust to advocate for this vital role. Over the last two years, our Quality Improvement (QI) team has been working hard to provide cystic fibrosis (CF) centres with tools that help ensure people with CF have access to the best possible support. Here we share some of the outcomes from recent QI projects, and what we are doing to improve the quality of care for the CF community.