“We couldn’t do what we do without you”: David’s blog

As the year in which we have marked the 60^th anniversary of the Trust comes to a close, I wanted to reflect on what we have been able to achieve together.

Thanks to the dedication and support of the CF community, we’ve made some incredible progress over the last twelve months – providing essential support and information, funding more life-changing research and ensuring that the voice of the CF community is truly heard.

Whether you took part in a challenge, organised a fundraising event, participated in a campaign or supported us in another way – thank you. Without your support, we wouldn’t be able to do the work we do.

Our latest CF Registry Report includes information from over 11,300 people living with CF in the UK. It shows how the community is growing and changing. Nearly two-thirds of the UK CF population are now over 16 years old and of these, nearly two-thirds are in work or studying. Currently one in six people with CF in the UK are over 40 years old. Using Registry data, we are able to predict that half of people born today with CF in the UK will live to at least 64. 

Read Dr Jamie Duckers’ blog reflecting on key findings from this year’s Registry Report

This year, NICE gave approval for the life-changing CF modulator drugs to be made permanently available on the NHS across the UK. This was a truly significant moment and followed many years of campaigning by Cystic Fibrosis Trust and people right across the CF community. However, we never forget that these medicines are not a cure and are not a treatment available for everyone with CF. 

Alongside areas of real progress, we know that the year has been challenging for many. Through our annual Your Life and CF survey you told us that cost of living continues to be a big worry. Meanwhile, the continued uncertainty around Creon supplies affected many people throughout this year. We recently issued a renewed call to the Government to urgently establish a medicines shortages taskforce, with an immediate focus on developing a national action plan for addressing and resolving PERT supply issues. 

We continue to be inspired by the people who make up our CF community – our incredible supporters, clinicians and researchers. Last month, we held an awards ceremony to mark 60 years of dedication, hard work and support from the CF community across healthcare, research, advocacy and fundraising. The awards were a great opportunity to highlight some incredible people, and a chance to say thank you to each and every person who helps to make a difference.

We couldn’t do what we do without you. We will continue to be here for the CF community – to support you, listen to you and to advocate for you. We won’t stop until CF does.

Thank you and I hope you have a great festive period.

Our opening hours during the festive period

Our Helpline will be closed from 12pm midday on 23 December, and reopens at 10am on 2 January 2025. You can find information and support on all aspects of life with CF here on our website, and you can visit our online community to talk with others in the CF community.

If you need urgent support, please contact your CF team, or if you need a listening ear the Samaritans are available 24/7 every day of the year on 116 123.