A group of charities, including the Trust, have published a letter for everyone who is at highest risk from COVID-19 to download and use in discussion with your employers about how to keep safe at work.
This study aims to look at the safety and effectiveness of taking a new triple combination CFTR modulator treatment, which is made up of the 3 medications VX-121, tezacaftor (TEZ) and deutivacaftor (D-IVA). Deutivacaftor is a slightly modified version of ivacaftor to make it potentially more stable in the body, which means deutivacaftor can be taken once per day instead of twice daily. The safety and effectiveness of this new triple combination treatment will be compared against Kaftrio® (which consists of the 3 CFTR modulators elexacaftor, tezacaftor and ivacaftor). CFTR modulators help the faulty CFTR protein to function properly. To...
This study assessed the safety and effectiveness of the new 'vanza triple' in people with CF ages 12 and older who have one F508del mutation and one minimal function CFTR mutation. The results of this study show that this new therapy is at least as good at Kaftrio in improving lung function and it is better in reducing sweat chloride levels.
We are determined to find life-changing treatments that work for everyone, so that no one in our community is left behind. In our latest Research in Focus report, we spotlight the exciting Trust-funded research underway into 'alternative ion channels' and the development of medicines that could work for everybody with CF.
This could make a big difference for families like Lizzy’s, whose 16-year-old son Isaac has a rare type of CF which means he does not benefit from CFTR modulator drugs like Kaftrio. Here, Lizzy shares their story.
We update you on progress that’s been made in addressing your research priorities in the last five years, and why we’ll be asking for your help in refreshing them in the New Year.
COVID-19 remains a threat, particularly to some groups such as transplant recipients and other immunosuppressed people. This research study will help scientists and the Government assess the effectiveness of the third COVID-19 vaccination or “booster” vaccination programme among immunosuppressed people. A 6 month follow up will see how many Covid infections have been reported in the trial groups. If you’ve had a solid organ transplant (e.g. lung, liver, kidney), are taking medication to suppress your immune system and have received your third COVID-19 vaccination or “booster” vaccination, you can register to take part. Visit www.melodystudy.org to find out more about...
Our amazing supporter Aimee, whose daughter Harper has CF, hosted a FeBREWary tea party last year, raising an incredible £1,500. Here, Aimee talks about Harper’s journey with CF and why she’s encouraging others to get involved in FeBREWary 2022.
