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Our highlights: Looking back at 2025
January
We started the year off strong, launching an exciting new fundraising event at Harewood House in Leeds. Walk, Jog, Run for CF would bring supporters together in October to raise money and awareness.
We also heard from Trustee Sophie Pierce on Woman’s Hour as she prepared for an extraordinary challenge: a 3,200-mile unsupported row across the Atlantic Ocean. Sophie is hoping to become the first person with CF to row an ocean, raising vital funds for the Trust along the way.
February
February saw recruitment begin for a major gene therapy trial, a significant step forward in the search for treatments that work for everyone.
NICE also began its appraisal of the new vanzacaftor triple therapy.
Sophie’s Atlantic row also got underway in Lanzarote, with her and her team arriving in Antigua 53 days later after an epic and gruelling journey.
March
In March, we launched our spring appeal with Chloe’s story, highlighting the urgent need for better treatments for infections to ensure that no one with CF goes into hospital and never comes home.
Our supporter Shelagh marked her 80th birthday with a skydive, going on to raise £30,000 for the Trust!
Trust-funded research led by scientists at University of Cambridge identified a new approach to treating lung infections caused by Pseudomonas aeruginosa, pinpointing enzymes the bacteria rely on and showing they can be inhibited by small molecules.
Updated UK standards for the nursing management of cystic fibrosis were published, developed with support from Cystic Fibrosis Trust.
The month concluded with our MDT conference, and we announced two new research projects alongside our longstanding funding partners, Action Medical Research.
April
Our incredible team of 100 London Marathon runners, including 11 people with CF, raised a phenomenal £340,000. We caught up with some of our runners as they were limbering up ahead of the marathon.
We also published our staffing report in April, highlighting serious staffing and resourcing challenges in UK CF services: as of October 2024, vacancy rates stood at 12.2% (significantly higher than the NHS average), many centres lacked key roles such as social workers, pharmacists, and CF psychologist, and many vacancies remained unfilled for over six months.
May
Our Youth Advisory Group (YAG) launched Cracking the CF Code, a new resource designed to help children affected by CF better understand complex medical terms and concepts. We caught up with the Trust’s youth team to find out more.
We also shared the winners of last year’s Helen Barrett Bright Ideas Awards, celebrating the creativity and entrepreneurship of people with CF.
June
The biggest, brightest week of the year, CF Week, returned in June, and the CF community came together yet again to raise funds and awareness. 267 people organised Wear Yellow Day events, proudly lighting up communities across the UK and raising a record £159,000!
The Trust announced £1.3 million of new research funding for three projects: tackling Mycobacterium abscessus, exploring new treatments for CF diabetes, and investigating new activators of the CF protein in the lung.
We also published new findings from the Trust’s Your Life and CF survey: 70% of people with CF reported feeling lonely in the past 12 months because of their condition. Additionally, awareness of CF amongst the general public remains limited: many people are unaware that CF is inherited or affects the whole body.
July
In July, Alyftrek (vanza triple), a new once-a-day triple combination modulator drug, was approved by NICE. NHS England also confirmed an extension to eligibility for triple therapies Kaftrio and Alyftrek, giving access to more people with CF. This was a hugely positive step for our community, but we also recognise that these drugs are not a cure – and we won’t stop until everyone with CF can live a life unlimited.
August
August saw the Trust partner with the British Society for Research on Ageing, recognising the growing and ageing CF population and the need to better understand long-term health.
September
We celebrated one year of the Translational Innovation Hub Network for CF Lung Health and Infection, a £15 million network of four Innovation Hubs, led by the Universities of Cambridge, Liverpool, Manchester and Imperial College London, as well as partners across the UK and overseas. Funded in partnership with LifeArc, the Network aims to find better ways to diagnose and treat lung infections, tackle antimicrobial resistance, and stop the disruption that lung infections can cause to the lives of people with CF and their loved ones.
October
October kicked off with the UK CF Conference, as the research community came together to share learning and look ahead. Our podcast host Lucy attended the conference – her key takeaway was a message of optimism and hope.
October also brought the publication of the latest Registry Report, showing that there are now over 11,300 people with CF in the UK, with over 65% aged 16 or over, and more than 260 people aged 60 or over. The data reflected real progress, including improved lung function overall, fewer people needing IV antibiotics, and wide use (over 85%) of modulators – while also highlighting ongoing challenges such as diabetes, liver disease, and high treatment burden.
November
In November, Alyftrek became available in Northern Ireland and Wales.
We also published our full Your Life and CF report, exploring mental health, cost of living pressures and access to care in 2025. We’re calling on the Government to deliver long-term solutions for people with CF in four key areas: specialist care and support; financial security, healthcare costs and access, and energy. Find out more about how we’re using the findings to continue to lobby the Government for long-lasting and meaningful change.
We launched the very first Not Just The Lungs Week, shining a spotlight on the fact that CF affects the whole body, not just the lungs.
December
This festive season, we’re joining together with our community to turn worry into wonder for everyone with CF. With your help, we can fund revolutionary research and help make sure everyone with CF can live a life unlimited.
Every milestone has been driven by our community – from people living with CF, supporters and fundraisers, to researchers and clinicians. With your support, we can continue our work funding groundbreaking research, providing world-class information, campaigning for change, and supporting our community every step of the way.
Together, we won’t stop until we achieve a life unlimited for everyone with CF.
Turn worry into wonder
For people with cystic fibrosis the festive season can be the most worrying time of the year. Together, we can change that.