Our November Media Roundup

60th anniversary awards

In November  we held our 60th anniversary awards ceremony to showcase the hard work, dedication and outstanding achievements of the CF community. Our ambassador Richard Madeley hosted the event, singer-songwriter Lucy Crisp, who has CF sang live, and we were joined by our ambassador Jenny Agutter . Celebrities such as Roger Black, Vincent Franklin, Eleanor Matsuura, Annette Badland, James Dunmore, Ben Shephard and Anna McNuff announced the winners via video messages . We'd like to thank everyone who nominated and all of our shortlisted finalists – you are truly amazing! 

You can watch the recording here.

Jason Derulo on GMB

Music icon Jason Derulo appeared on GMB, speaking to our ambassador Richard Madeley about cystic fibrosis and collaborating with the Make-A-Wish Foundation, to grant a teenage boy living with CF his dream of making music in a recording studio. 

You can watch the clip and read about it here.

Festive campaign 

This year our festive campaign featured Duane’s story, his four-year-old son Xander is living with a rare gene type which means he can't benefit from modulator treatments like Kaftrio. His festive wish is to raise awareness of CF and fund further research for the condition, so that Xander can truly live a life unlimited. 

You can read his story in the Mail, and find out more about the festive appeal here. 

Registry report findings 

We worked with the Express to highlight the findings in our 2023 UK CF Registry Report which was published this month. The report predicted that half of those born in the UK today with CF will live to the age of 64.  

You can read the key findings here and the article in The Express.  

PERT survey

We also launched the results of our PERT survey, which received nearly 750 responses – and some of the highlights were featured in The Pharmaceutical Journal. 1 in 2 told us that they had experienced digestive issues, such as bloating and diarrhoea, and 1 in 5 told us that they have been losing weight due to the shortages. We are urgently calling on the Government to find lasting solutions to the supply issues. The Trust would like to thank everyone who completed the survey 

You can find out more on our website.