February Media Roundup

Cystic Fibrosis Trust hosts journalist briefing 

The Trust hosted a briefing for journalists at the Science Media Centre, to highlight the progress made over the last 60 years. It was also an opportunity to talk about the Trust’s new research goals and the future of CF research and medicine. 

Our Chief Executive, David Ramsden, our Director of Research and Healthcare Data, Dr Lucy Allen, and two of our researchers, Professor Jane Davies and Dr Freddy Frost were on the panel.

Dr Lucy Allen said: “Though many people with CF are now benefitting from modulator therapies and stable health, there is still a lot about CF we don’t know. We used the priorities of the CF community to shape our new research goals to work towards a future where everyone can benefit from a life unlimited by CF.”

You can read more about it here and on our website. 

Recruitment has begun for new gene therapy trial 

Boehringer Ingelheim and the UK CF Gene Therapy Consortium (GTC) announced that recruitment has begun for a new gene therapy trial for people with CF in the UK. 

Gene therapies are one type of genetic therapy that could be an effective treatment for everyone with CF in the future, including people who cannot benefit from CFTR modulator medicines. The Trust has supported GTC with the development of gene therapies for over 20 years and this is an important milestone for the CF community. This is a really important step but we know there is a lot of hard work to do before gene therapies are part of routine treatment and we are looking forward to progress in the months and years ahead.

You can read more about the trial on our website and in this article. 

Finlay’s London Marathon challenge 

Our supporter, Finlay, who has CF, is training to run this year’s London Marathon for the Trust. Finlay spoke with BBC Radio Bristol and local media to share his story.

He said, “Training for this marathon won’t be easy, but neither is living with cystic fibrosis”. He added “I have to work really hard behind the scenes, whether it’s managing medications, staying active, or balancing my health with everything else in life.”

Thank you to Finlay and all of our #TeamCF supporters who are taking on challenges throughout the year. You can read more about Finlay’s challenge here. 

Creon 

Lastly, there was further media coverage on the Creon supply issues. The Department of Health and Social Care responded to say that it is working with the NHS, manufacturers and others in the supply chain to try to resolve the issues.

The story was covered on the BBC with a comment from the Trust, and our Helpline was also mentioned on BBC Breakfast. You can read the article here. You can also read about what the Trust has been doing recently in response to the shortages here.

You can watch our February Roundup video here.