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?
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.
Following the announcement that Kaftrio has been approved for use for eligible children aged 6-11 in Northern Ireland, we are delighted that the MHRA has also now approved the life-changing CF drug for children across the rest of the UK too. This is a huge milestone in the Kaftrio journey following years of campaigning by people with cystic fibrosis and their families.
The life-changing cystic fibrosis drug, Kaftrio, has been approved for use for eligible children aged 6-11 in Northern Ireland. This is a huge milestone in the Kaftrio journey following years of campaigning by people with cystic fibrosis and their families.
We know that the rising cost of living and the financial burden of living with a life-long condition is a worry for many people in the CF community. This CF Week, we're #liftingthelimits, so everyone can access the support they need.
Here, Sangeeta and Nicky from our Welfare team share their top tips to help the community cope with the increased cost of living. If you would like to talk things through, please get in touch with our Helpline, seek advice locally or speak to your CF team.
