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.
This Mother’s Day, we wanted to share a story from the cystic fibrosis (CF) community, just one of many unique experiences of motherhood, family and life with cystic fibrosis. Alison writes about her family, and how her CF is part of their ‘normal’.
Our Trial Coordinators play a key part in supporting participation in CF clinical trials. We spoke to Juneka Begum, Trial Coordinator in Birmingham, about her role and how things have adapated in the pandemic.
We’ve just opened applications for this year’s summer studentship scheme, which provides funding for academic researchers to host an undergraduate student in their research group for 6–8 weeks. For the Trust, it’s an opportunity to encourage science students to consider doing cystic fibrosis (CF) research during their careers; for the students, it is a chance to get a feel for what it’s like to do medical research. Robbie Bain is in his fourth year of his medical degree at Newcastle University. We talked to him about his experience of doing a summer studentship last year, and how his plans changed during the COVID-19 pandemic.
CF STORM is a ground-breaking trial to find out if people receiving Kaftrio can safely start to reduce the number of treatments they have to manage as part of their daily healthcare routine. Here we explain how the Trust has been involved from the outset and how we continue to support the development of CF STORM by involving people with cystic fibrosis (CF) and their families.
To commemorate Rare Disease Day, we are sharing Rachael’s story, a passionate advocate for rare diseases who ran the virtual London Marathon in 2020. Here, she tells us how a promise to a friend with cystic fibrosis (CF) inspired her to join Team CF.