This week saw the third anniversary of the precision medicine Orkambi being licensed for use in the UK, while arguments over funding mean people with CF continue to be denied access. The Trust’s Head of Policy and Public Affairs, Nick Medhurst, reports back from a week of events that united the whole CF community to turn up the noise on the vital issue of access to medicines.
Starting your own business is challenging for anyone, especially when you have cystic fibrosis (CF). It’s important for you to manage hospital stays, physio and medication. We caught up with fashion designer Laura Beattie at her stall in London’s Coutts Christmas Market last month to get her top tips on starting your own business when you live with CF, and hear how she was inspired to pursue her dream career as an entrepreneur.
Fiona has completed Great Strides three times as a walker and has also been a support driver and event volunteer. As we gear up for the return of Great Strides in 2021, she tells us about the many benefits that training walks brought her, the team spirit, and what keeps bringing her back.
On her 400-mile Ride for Research challenge, Director of Research Dr Lucy Allen paid a virtual visit to one of the Strategic Research Centre (SRC) on Pseudomonas that we fund, based at Imperial College London. Here, she caught up with Dr Dominic Hughes – cystic fibrosis (CF) clinician, researcher, and member of the SRC team – where he shared his passions for CF research and cycling, his involvement in the SRC and what a life unlimited by CF means to him.
When the author Helen Stevenson was told her firstborn daughter had cystic fibrosis she couldn’t bring herself to write any more. It felt like a distraction from tending and nurturing her baby. Now Helen has channelled her experiences into the beautiful memoir ‘Love like Salt’, a story about mothers, daughters, music and illness.
Analysis of UK CF Registry data found that people with cystic fibrosis (CF) taking ivacaftor (brand name Kalydeco) appear to have fewer lung infections than people who are not on the drug. This is the biggest registry-based-study of the effects of ivacaftor on lung infections so far. In the future, this could lead to a reduction in the daily medications people with CF have to take.
