We spoke to Esther Valentine, mum to 5-year-old Joshua (who has cystic fibrosis), about Community Involvement in clinical trials and her role as a lay member on the Research and Scientific Oversight Board (RSOB).
Dr Keith Brownlee, Director of Policy, Programmes and Support -
With the approval for the first coronavirus (COVID-19) vaccine being granted in the UK, and roll out likely to begin as early as next week, Dr Keith Brownlee, Director of Policy, Programmes and Support, explores why the vaccine is so important for people with cystic fibrosis (CF,) how it will roll out, and some of the concerns people may have.
Hundreds of researchers around the world are investigating genetic therapies for cystic fibrosis (CF). Genetic therapies offer the potential of being able to treat everyone with CF, including those who for whatever reason are not eligible for CFTR modulators. Earlier this month we announced funding for a Strategic Research Centre (SRC) grant on developing gene editing therapies, a type of genetic therapy. Here we take a closer look at how gene editing and other types of genetic therapy work and how they could benefit people with cystic fibrosis.
This time of year is normally a time to celebrate and reflect. For those who have lost someone, it can also be an incredibly hard time of year, particularly when we can't all come together as we normally would. Julia and John shared their stories about the importance of remembering their loved ones who have died, and how making a tribute to them through our website has helped.
In the latest edition of CF Life, we shared Polly's story – the first baby in the world to be diagnosed with cystic fibrosis (CF) through an established newborn screening programme. She was born at Ipswich Hospital in part of the East Anglian region, which was the first region to set up a newborn screening service for CF, a model that was later adopted across the rest of the UK. We spoke to the pioneers behind the programme, and looked at how their work has impacted people with CF and changed the way support is provided to families.
At this year’s North American Cystic Fibrosis Conference, Dr Claire Edmondson won a prize for her research on the Trust-funded ‘CLIMB-CF’ study investigating the feasibility of remote monitoring in children with cystic fibrosis (CF). Here we explain more about it
Last month, the Scottish Government announced a different approach to disability benefits, right through from application to the appeal process. Here, our Welfare and Rights Advisor, Sangeeta Enright, explains what will change for people with CF applying for disability benefits in Scotland.