On the day we launch QuestionCF, an exciting projectto review your cystic fibrosis (CF) research priorities for the future, Nicole and Martyn Edwards - who have double the reason to be interested in the project - share their story and what’s on their CF research wishlist.
The cystic fibrosis (CF) community play a vital role in shaping our research, and it’s really important to us that we’re prioritising the topics that matter most to you. That’s why we’re asking for your help. We’re asking the whole community – people with CF, families, carers, professionals and researchers – to share your views and tell us what your CF research priorities are right now, in 2022.
Last year, Vanessa, whose 18-year-old daughter Shona has cystic fibrosis (CF), and her sister Rachel, organised a virtual FeBREWary event with friends and family, raising an incredible £1,700 for the Trust. As we gear up for the return of FeBREWary next month, they tell us about the inspiration behind their fundraising and why they won’t stop until everyone with CF can get the treatments they need.
Before we launch our new online forum next month, we want to hear from you to make sure that it is built and driven by the CF community’s needs. Can you fill out our quick survey?
Developing and apply pioneering new methods to study the mechanics of lung clearance, as a basis for developing effective and personalised therapeutic approaches for CF in the future.
A new year can bring feelings of uncertainty, especially in these difficult times. The last couple of years have been tough on all of us, and it’s normal to be experiencing a range of different emotions right now. If you’re struggling, remember you’re not alone. Here we share some tips and resources to help you take care of your wellbeing.
Amid the excitement surrounding the announcement that 6 to 11 year olds in the UK will be able to access the modulator drug Kaftrio, we know that for the many in our community who don’t benefit, the future will still feel uncertain. We won’t stop until everybody with CF can access the treatments they need. Here, our Director of Research Dr Lucy Allen, tells us about some of the exciting research that’s underway that could help those who don’t benefit from CFTR modulators.
Following the exciting announcement that the life-changing CF drug, Kaftrio, has been approved for use across the UK for 6 to 11 year olds, we caught up with Stacey, whose eight-year-old daughter Katy has CF, to find out about the difference this could make to Katy’s future.