2025-03-31-accounts

Annual Report and Financial Statements for the year ended 31 March 2025

Unstoppable together Uniting fora life unlimited

Contents

Thanks to you, in 2024/25... 4 Introduction from our Chair 6

Uniting for a life unlimited 8 Uniting in research 12 Putting people with CF first 18 Uniting for the CF Community 24 Diverse and together 32 Uniting in fundraising 42 Looking to the future 48 Financial review 54

We won't 99 stop until CF does.

Independent auditor’s report to the Members and 64 Trustees of Cystic Fibrosis Trust Consolidated statement of financial activities 68 Consolidated and charity balance sheets 69 Consolidated statement of cash flows 71 Notes to the Financial Statements 72 Structure, governance and management 96

Open SRC/DA Awards 98 Open VIA Awards 99

Whenever I accomplish something, I think of my donor and hope they would be proud.” Zanib, who has CF and had a lung transplant in 2020

Thanks to you, in 2024/25...

We launched two new regional trial networks within our CTAP

programme, meaning that even more people with CF will have the opportunity to take part in clinical trials.

We awarded £1,379,000 across Strategic Research Centres (SRCs) and Development Awards (DAs) to support groundbreaking projects.

We helped people with CF access over £2.1million in benefits through our Welfare and Rights Advice Service.

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We’ve handled over 4,500 enquiries to our busy Helpline across phone, email, WhatsApp, and social media.

We provided 550 Winter Support Fund grants, supporting low-income households with the basics needed to stay well over the difficult winter months.

We had an incredible combined reach of 4.7m across our social media channels and over 1,000 pieces of media coverage with a huge potential editorial reach of over . 2 billion

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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The Trustees present their annual report and financial statements of the charity (company number 3880213) for the year ending 31 March 2025. The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the charity’s memorandum and articles of association, the Charities Act 2011 and the Statement of Recommended Practice: Accounting and Reporting by Charities second edition effective 1 January 2019.

The requirements of ‘The Companies Act 2006 (Strategic Report and Directors’ Report) Regulations 2013’ are included within this Trustees’ report. Pages 54 to 97 also form part of the Trustees’ report.

Introduction from our Chair

I am delighted to present Cystic Fibrosis Trust’s 2024/25 Annual Report, which documents another year of impact, challenge and change.

I hope you will find it a comprehensive and impressive document and I would like to start by thanking everyone in the CF community for all they have done over the last 12 months to make the successes we report possible.

I am proud to be Chairman of the Trust and from that vantage point I can see how important all of our partners are as we strive together for a life unlimited.

The year saw us continue to mark the 60th anniversary of the Trust. Through supporter events and an awards ceremony, we were able to celebrate what has been achieved but also be very clear about all that remains to be done.

The anniversary gave us the opportunity to tell more stories, with podcasts, a special edition of CF Life and a digital timeline showing decades of progress, alongside the many challenges that still come with CF.

To address these we’ve funded more research, adding to our portfolio of Strategic Research Centres and funding a number of Development Awards.

In October, we announced our largest ever partnership, a £15 million Translational Innovation Hub Network co-funded with medical research charity LifeArc. The focus of this work over the next five years will be improving the diagnosis and treatment of CF lung infections and maintaining lung health.

Richard Hunt CBE

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The anniversary gave us the opportunity to tell more stories, with podcasts, a special edition of CF Life and a digital timeline showing decades of progress, alongside the many challenges that still come with CF.”

We continue to work with new partners, funding a research study with Bowel Cancer Research UK to examine one potential aspect of growing older with CF.

Alongside our research activity, we have supported and developed our Clinical Trials Accelerator Platform, which has now enrolled over 6,000 people since its inception eight years ago.

We have ensured that the UK CF Registry provides comprehensive and timely information and analysis, supporting the best possible care and treatment for people with CF.

In fact, Registry analysis was at the heart of one of the most significant moments of the year, when, after a period of uncertainty, NICE gave formal approval for the long-term use of a portfolio of modulators on the NHS. Even as we marked that moment, our thoughts were already turning to the next drug in the pipeline, with Alyftrek being licensed for use by the MHRA in March.

This progress has been accompanied by concern about the supply of some medicines, most notably Creon, and we have been working throughout the year to do what we can to inform the CF community and minimise any long-term impact.

As we look to the future, we are also ensuring that we are able to support people’s needs today.

Our Helpline has handled thousands of queries and over the winter months, we provided vital funds to 550 households. This is the highest ever.

Our Work Forwards programme has now held over a hundred advice sessions to help people in to employment and the Helen Barrett Bright Ideas Awards celebrated 10 years of backing so many aspiring entrepreneurs.

All of this is only possible due to the incredible support and involvement of the CF community. You fuel us with your fundraising and inspire us with your voice.

I would like to thank all colleagues whose work in the Trust has made this year so successful and to my colleagues on the Board, my personal thanks for your commitment and support.

We will not stop until CF does.

Thank you.

Richard Hunt CBE Chairman of Trustees

Promoting the highest quality care has remained a central priority and this year saw the publication of new Standards of Care for the treatment of CF. We also expanded our portfolio of events to include a conference focused on the future of CF care.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Uniting for a life

Cystic fibrosis is a 365 day a year, 24 hour treatment regime… it doesn’t stop. You never get a day off.”

Jonathan, who has CF and featured in our No day off campaign

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Objectives and activities

Our vision is to deliver a life unlimited for people with cystic fibrosis, and our objectives, as stated in our Articles of Association, are to promote:

• research into the causes of, and a cure for, cystic fibrosis and the dissemination of the useful results thereof for the public benefit

About us

Our mission

Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis. Our community will improve care, speak out, support each other and fund vital research as we race towards effective treatments for all. We won’t stop until we can all lead the lives we want. Until cystic fibrosis stops damaging and shortening lives.

Our vision

• the care, treatment, education and advancement in such ways as are charitable of persons suffering from cystic fibrosis in any form

• the education of the general public about the causes and effects of cystic fibrosis.

About CF

Cystic fibrosis (CF) is a life-limiting genetic condition that destroys the lungs and digestive system. You are born with CF and cannot catch it later in life. One in 25 of us carries the faulty gene that causes it, usually without knowing. More than 11,000 people in the UK live with the condition, enduring a brutal daily routine of physiotherapy and taking over 30 tablets a day just to stay healthy. Despite these treatments, some people with CF will go on to require a double lung transplant. The median age of death for someone with CF in 2023 was 46.

Our community is uniting towards the ultimate goal of effective treatment for all. We’re at the forefront of innovation and progress. Boundaries will be broken by groundbreaking research and incredible discoveries that change lives for the better. To get there, we will inspire our community. We will campaign with passion. Use facts and information to empower us. And support each other – improving care and building better mental resilience and physical health.

It’s thanks to our incredible supporters, clinicians, researchers, professionals, partners, and, most importantly, people with CF that over the last 60 years we’ve been able to make vital breakthroughs and discoveries in CF understanding and treatment.

We’re uniting for a life unlimited

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Our goals Physically well

Together, we can live without the physical challenges of cystic fibrosis.

Fulfilment

Mentally well

Together, we can lead the life we want as part of a

Together, we can manage the mental

pressures of cystic fibrosis. life we want as part of a connected community.

Measuring success

We analyse our progress against criteria for success in order to ensure we are operating at our best and delivering the most impact to the CF community. We hold impact workshops to assess quarterly progress in achieving our objectives under each of the Trust’s impact priorities. We also track progress via internal monthly and quarterly monitoring mechanisms, including both data-driven and narrative analysis, backed up by SMART Key Performance Indicators.

Our performance is reviewed regularly by the Board of Trustees to ensure our accountability and continuous improvement.

To achieve these ambitious goals, we will work with our community and partners across the UK and internationally to support innovative, high-quality research, achieve access to the best treatments, drive up the quality of care, and provide and advocate for the support needs of people with cystic fibrosis.

We also know that to deliver on this vision we need to adapt and change as an organisation, including a greater focus on:

• putting people with cystic fibrosis at the heart of everything we do

• building international and domestic partnerships

• optimising our working culture

• being great and innovative fundraisers

• making effective use of data and analytics, including implementing our new data strategy and a new quantitative impact framework

• working in ways that bring together our diverse community and staff, including our new equity, diversity and inclusion strategy.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Uniting * in re/Jwth 12

We are continuing to drive and support innovative, world-leading research such as the Translational Innovation Hub Network on lung health and infection in CF in partnership with LifeArc. We are expanding clinical trial opportunities through establishing new regional networks within our Clinical Trials Accelerator Platform (CTAP), and strengthening partnerships across the life sciences sector, enabling faster access to new treatments and better outcomes for people with CF.

Developing effective treatments for all

CTAP remains one of the leading global CF clinical trials networks, screening over 9,000 participants and enrolling more than 6,000 since its launch eight years ago. This year, people with CF who are unable to benefit from modulators had the opportunity to take part in three new genetic therapy studies that could address the underlying cause of CF.

Two new regional trial networks have been launched within our CTAP programme, meaning that even more people with CF will have the opportunity to take part in clinical trials. One network covers the whole of Scotland and North East England, and a second spans across the South West of England.

Not all CF centres are able to run clinical trials. Thanks to our regional network we’re talking to each other and improving how we work together. It means that it’s easier for people to take part in research going on at a CF trial centre within the network.”

Dr Don Urquart, chair of the Scotland and Northeast Regional network

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Living with CF diabetes is like constantly being on a rollercoaster. It’s juggling what I eat with how much insulin I’m giving myself. Mentally, it can cause a bit of an unhealthy obsession with what I’m eating – I can’t just sit down and have a meal.”

Annabelle, who has CF

Improving the diagnosis and treatment of CF lung infections and maintaining lung health

In October, we announced a new £15 million Translational Innovation Hub Network, co-funded with medical research charity LifeArc.

Guided by insights and experiences of people with CF, the new CF Innovation Hubs will address new ways to detect, diagnose, treat, and manage lung infections and lung health, and help to overcome some of the barriers that can prevent scientists from turning their discoveries into real outcomes for patients.

“This condition affects everything about my life, every single day. I have to adjust my life around my symptoms, in everything from work to friendships.

Treating symptoms and complications of CF throughout the body

CF diabetes (CFD) is a difficult illness to manage alongside other CF symptoms.

The insights we gathered from those with lived experience of CFD through our involvement activities have informed many activities across the Trust, from a workshop at our MDT conference in March to a review of our information resources. They’ve also shaped the direction of a research project focused on creating an educational tool for those with CFD. Participation in involvement activities benefits members by empowering them to engage further.

To improve how CFD is treated and managed, we awarded £300,000 over three years to Drs Ildem Ackerman and Vicky Salem to explore whether a Type 1 diabetes therapy could work for CF diabetes, potentially eliminating the need for insulin.

“The dream, for me, is to have less of a treatment burden and more time feeling like a valuable member of society. These new Hubs give me hope because improving research into the cause of exacerbations and the development of potential new treatments takes away a lot of my fears around what my health is going to look like in the future.” – Sarah, who has CF

The new network aims to accelerate groundbreaking research, building on the success of the original CF Innovation Hub at the University of Cambridge, which made world-class advances in our knowledge of CF lung infections.

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Uniting researchers to achieve a life unlimited for people with CF

This year we have held several events to build and strengthen the network of innovators, researchers and clinicians working in CF research.

In June over 60 delegates attended our Industry Symposium immediately prior to European CF Society meeting in Glasgow. A third of the delegates were from organisations across the life sciences sector. We presented a new animation and invited speakers to highlight the Trust’s research support offer to industry innovators. The event was kindly supported by LifeArc.

In October over 35 early career researchers attended our first Early Career Researchers conference in person or online to network, learn more about Cystic Fibrosis Trust, and empower them to continue to work in CF research in the future.

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This funding, along with the wraparound support provided by the CF AMR Syndicate, will help advance promising solutions to the urgent need for more effective treatments for CF lung infections. The aim is to accelerate the discovery of novel therapies that could significantly improve the lives of people with cystic fibrosis.”

Dr Heather McKinnon, Head of Chronic Respiratory Infection at LifeArc

CF AMR Syndicate

The CF AMR Syndicate brings together academia, industry, patient organisations, R&D experts, clinical teams and, most importantly, people with CF. Your voice is key in helping innovators understand the unmet needs of people with cystic fibrosis.

In the last year, six biotech companies won support from the Syndicate’s Collaborative Discovery Programme (CDP) to develop new anti-infective treatments guided by the Syndicate’s patient-focused wishlists, known as Target Product Profiles. The companies are receiving hands-on expert support to develop their products.

Dr Catherine Kettleborough, LifeArc’s Chronic Respiratory Infection Translational Challenge Lead

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Enabling people to live longer, healthier lives

Improving the understanding of the physical and mental health challenges people with CF face as they grow older is an important area of CF research, and it starts with people with CF sharing their lived experience. Through our involvement activities, Laura Eccles shared her thoughts on growing older with CF with over 2,000 researchers and clinicians at the opening session of the European CF Society.

As people with CF grow older, they face diseases, such as cancer, cardiovascular disease, and dementia, that may require earlier or adapted screening due to CF symptoms and complications. As guidelines are developed, it is vital that they are informed by the CF community.

One way we’re supporting this is by funding a research study with Bowel Cancer Research UK, led by Professor Laura Ashley at the University of Leeds, to gather the views and experiences of people with CF and their CF teams on bowel cancer screening.

Accelerating research

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Dr Lucy Allen
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We are delighted with the success of the CF Innovation Hub on lung health, which exemplifies what can be achieved with this level of investment and multidisciplinary collaboration.”

Dr Lucy Allen, Director of Research and Healthcare Data

Our CF Accelerating Research package supports life science industry partners to align their work with CF community needs. Through support from the UK CF Registry, our involvement work, and the support of our Clinical Trials Accelerator Platform, CTAP, the Trust has enabled companies to refine study designs, improve trial feasibility, and increase the speed at which clinical trials are set up and delivered.

Over the past year, we engaged 12 new commercial sponsors and maintained relationships with many more across a range of therapeutic areas, from pre-clinical studies to phase 3 trials testing the effectiveness of medicines.

This ongoing commitment to industry collaboration continues to drive progress in drug development, trial accessibility, and ultimately, improved treatment options for the CF community.

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Funding world class research

We awarded £1,379,000 across Strategic Research Centres (SRCs) and Development Awards (DAs) to support groundbreaking projects, exploring treatments for Mycobacterium abscessus lung infections and CF diabetes, and new ways to improve lung health.

Additional funding was allocated to early career researchers and novel CF studies through Venture Innovation Awards (VIAs), Fellowships, and Summer Studentships.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Putting people ith CF firs 18

Collaborating with and supporting the clinical community to promote the highest quality of care

Our Clinical Advisory Group (CAG), made up of specialists in CF care, advises the Trust’s information resources and clinical programmes. Its Chair oversees the longstanding Clinical Fellowship scheme, which helps launch careers in CF and has produced many leading clinicians.

The Trust sponsors and provides secretariat duties for the UK Cystic Fibrosis Medical Association, supporting doctors delivering CF clinical care nationwide. The Trust’s clinical guidelines continue to promote best practice in CF care provision. In 2024/25 we published guidelines on:

• standards of care

• clinical psychology services

• nursing management of cystic fibrosis.

We also produced lay summaries of each guideline for people with CF and their families.

Updates are underway on several other key guidelines, including:

• antimicrobial treatment

• infection prevention and control

• physiotherapy management of cystic fibrosis.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 19

Improving quality of care in CF

In October 2024, our patient experience survey of over 1,250 adults with CF showed that CF care is generally rated highly by those who receive it. However, some respondents struggle to access psychologists, social workers or pharmacy staff when needed. The survey also highlights a growing desire and need for person-centred care in the context of an ageing and diversifying CF population.

We continued to monitor staffing levels in CF services using our staffing tool, with a record 51 CF centres contributing in October 2024. Participating CF centres received bespoke feedback in March 2025, and we published an updated report on UK CF service resourcing in early April.

We also worked with local CF teams on improvement projects and collaborated with CF professional interest groups to explore and address UK-wide challenges in CF care, such as gaps in psychology staffing.

Future of CF care conference

In March 2025, the Trust hosted its second dedicated conference for CF professionals, which featured presentations, panels, and workshops on ageing, CF diabetes, and gastrointestinal care. Over 150 CF professionals attended, with many reflecting on how the event supported their professional development in CF. 100% of those who completed our evaluation survey said that the event met their expectations, describing it as excellent, informative and inspiring.

I found the whole MDT ; event very helpful for me as I am new in post. I was very interested in how other teams in the country work. The workshops and panel discussions were highly informative.”

Neil, who attended the MDT conference

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Supporting the CF community through issues that affect them

Creon shortages

Creon shortages over the past year have caused stress and disruption for many people with CF. In response, we provided timely information and guidance to help people access medication. We engaged directly with the Department of Health and Social Care and the media to highlight the significant health impacts on people with CF, ensure that the voices of our community are heard, and push for solutions.

Households under financial pressure

Rising living costs coupled with the extra costs of living with CF continue to exert significant financial pressure on those in the CF community. Financial concerns are a key reason people contact our Helpline. We continue to hear regularly from people whose health is being directly impacted by poverty, as they struggle to afford the costs of food, travel, and keeping their home warm and dry, diverting time and energy from managing their CF.

This winter, over 550 households accessed our Winter Support Fund – the highest levels ever – with 1 in 5 of grant recipients reporting missed CF clinic appointments in the past year, and 1 in 4 reporting weight loss due to food insecurity.

100% of Winter Support Fund recipients felt that the support had helped to maintain their or their loved one’s CF health, and 70% of CF professionals surveyed felt it reduced winter hospital admissions.

This dramatic impact highlights both the troubling effect of living on a low income with CF, and the value of our welfare grants programme in supporting physical and mental health in vulnerable households.

Making sure our community is heard

Throughout 2024/25, we remained committed to amplifying the voices of the CF community and addressing the critical issues that affect them. The 2024 Your Life and CF survey captured invaluable insights from over 10% of the CF community into daily challenges like financial burdens, mental health concerns, and access to care.

These insights have directly informed our advocacy efforts, ensuring that our policy recommendations are rooted in the lived experiences of those with CF. For instance, the survey highlighted the continuing need for improved access to CF social workers and psychologists, leading us to advocate for appropriate support for these roles in the Darzi Review and subsequent consultation on the NHS 10-year plan.

Additional focus groups and engagement sessions with people with CF, their families, and healthcare professionals have provided a platform for the community to share their experiences and contribute to shaping our campaigns and policy positions.

In 2025, responding to community concerns about air quality and its impact on respiratory health, we began initiatives aimed at advocating for cleaner air policies and regulations.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Our campaign for free prescriptions in England has continued, targeting the outdated exemption list that excludes many with CF. Working with the Prescription Charges Coalition, we successfully lobbied for a freeze on prescription charges this year and continue to campaign for a comprehensive review of the exemption criteria.

Post-election, we’re engaging newly elected MPs to ensure the voices of people with CF are heard, championing equitable access to treatments, financial support, and environmental health.

Paying for my own prescription makes me feel unseen and invalidated as a student living with a life-changing illness. It’s another cost on top of so many extra costs that CF brings to my life.”

James, a Trust campaigner who has CF

By centring the voices of those affected by CF in our work, we ensure that our advocacy is not only informed but also empowered by the community we serve as we race towards effective treatments for all. We won’t stop until everyone can live without the limits of cystic fibrosis.

James (left), James’s dad, James’s twin brother (who also has CF), and their mum

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The UK CF Registry

The UK CF Registry is a world-class database that holds anonymised data on approximately 99% of people with CF in the UK who have consented to their data being submitted by their CF team.

Registry data is vital in helping people with CF and their families understand CF and make informed decisions, supporting research, improving services, monitoring the safety and efficacy of new treatments for CF, and helping commissioners provide funding to NHS CF centres.

In 2024/25 we have:

• supported three pharma research studies worth over £1.3million by providing analysis and reporting, and presented interim results at international conferences

• received up to £155,000 from NHS contracts for generating public reports and supporting the commissioning of CF services in England

• submitted anonymised 2023 data to the European CF Society Patient Registry (ECFSPR)

• received 60 data requests:

• 43 requests were reviewed and approved by the Registry Research Committee.

• 2 were declined and 2 are under review pending more information.

• 8 requests from ECFS Patient Registry requesting UK data were approved.

Data Validation

Programme

23 centres had a Data Validation Visit (DVV) in 2024 which showed high data entry quality, with no variables below 97% for adults and paediatrics – an improvement since 2022. These visits confirm the Registry’s suitability for use in research, pharmacovigilance studies, and NHS commissioning. Furthermore, undertaking these visits virtually have proven to be cost and time efficient. The UK CF Registry Data Validation Programme (DVP) has been adopted as a model of best practice by other CF Registries in Europe. For the 2023 data, a report has been sent to the ECFSPR to be added to their European Data Validation.

Registry development

The Registry platform was updated to enhance inclusivity and useability. We added new fields for gender identity; a new race-neutral lung function calculation; the new CFTR modulator therapy vanzacaftor (Alyftrek™); and reasons for pausing modulators. We also expanded the CF variant list in line with the CFTR2 database. A new dashboard enables users to monitor the annual review and encounter records across their patient cohort, and a new consent feature allows users to log and upload multiple consent forms. These changes reflect changes in CF care and the evolving needs of the CF community.

Annual Registry report

The 2023 UK CF Registry data report, published in November 2024, reported that there were 11,318 people with CF registered within the UK CF Registry, of whom 93% had an annual review in 2023. It presented new data on modulator use, including demographic data on those not taking modulator therapies. 8,212 people with CF were reported as being on a CFTR modulator by December 2023.

With colleagues across the Trust’s Research and Healthcare Data Directorate, we launched an Accelerating Research support package for industry, showcasing how Cystic Fibrosis Trust can provide support across the clinical research pathway. The UK CF Registry has supported three pharma companies with pre-feasibility data identify suitable CF centres for trials.

“The UK CF Registry 2023 Annual Registry report shows that the median predicted survival for someone born with CF today has increased to 64 years in the UK but also shows that the survival gap between men and women with CF is closing. Differences in outcomes between genders is a hugely under-researched area in clinical medicine but we have the valuable resource of UK CF Registry data to begin to help identify and understand these differences as we strive to deliver personalised care to people living with CF.” – Dr Jamie Duckers

• 5 requests were withdrawn prior to review by Committee.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Uniting for the CF 24

Day-to-day support Over the past year the CF community has faced significant challenges. We’ve been here to provide trusted information and emotional support to the CF community when it matters most.

We started this year in a place of uncertainty about the future of modulator treatments due to the NICE appraisal. We supported the community through this with key information updates and a safe space to share worries. We were delighted to then provide information on the positive conclusion to the appraisal as well as further updates on drug development and approvals as they happened.

More recently, we have been on hand to support the community with concerns about the impact of planned welfare reform, and we will continue to work with people affected by CF to advocate for their rights as this develops. Alongside reactive support, we’ve continued to provide a range of services and resources to help people with CF manage daily challenges and the unpredictable impacts of the wider economic and political times we live in. Throughout all of this, we continue to provide individualised, holistic and flexible support that empowers people with CF to overcome barriers and live the lives they want.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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In the most challenging times, we received lots of advice and support from the online forums on Cystic Fibrosis Trust’s website, especially when we were having treatment to conceive our daughter and wanted someone to speak to about our concerns. It was great to have a support network, information and all of the resources we needed.” Claire, whose husband Bob has CF

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Claire, Bob and their daughter Katy
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When I heard of the Helen Barrett Bright Ideas Awards, I felt excited at the possibility of getting help to make my dreams into a reality.”

Aiden, who has CF

Grants

This year, we provided 1,465 welfare grants totalling over £380,000, our largest volume of grants ever. This included 550 Winter Support Fund grants, supporting lowincome households with the basics needed to stay well over the difficult winter months. Alongside the grant, those supported by the Winter Support Fund received regular emails signposting to extra support, and were offered help from our welfare team to explore further financial aid.

Through the Joseph Levy Education Fund, we awarded 53 grants to support people with CF pursuing higher or further education. We also granted a total of £20,000 to 10 people with CF through our Helen Barrett Bright Ideas Awards to help them advance their own businesses. And thanks to support from the Joseph Levy Foundation, we supported over 60 adults and children facing a tough time with their CF to have a holiday or short break.

Over 90% of those who responded to our surveys told us the grant they received had positively impacted their physical and mental health.

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“I was sleeping on the floor with handed-down sheets and pillows; it was uncomfortable, and I don’t know how long I would’ve been in that position without the grant.” – James, who has CF

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 27

Benefits advice

Our welfare benefits and income maximisation services continued to ensure people affected by CF were able to access the financial support they need – undertaking complex casework and providing support around benefit appeals and tribunals.

Government welfare reform proposals have caused deep concern in the CF community. Our specialist frontline knowledge in how CF interacts with the benefits system has put us in a strong position to support and advocate for people affected by CF.

This year, we helped over 300 people to secure benefits income of over £2.1 million – vital income to help them meet the extra costs of living with CF. We also helped 58 people access income maximisation services, identifying additional income for them of over £4,000 per household.

Many of those affected by CF tell us that navigating the benefits system causes immense stress and worry, which affects their physical and mental health. Our specialist, dedicated service eases some of this worry, helping the CF community access the financial support they need to look after their health.

“CF and all the health and financial issues it comes with can be sometimes overwhelming. I feel there are people at the Trust who understand and genuinely want to help.” – Cora, who has CF (name has been changed)

All I could think about was the life expectancy of 41; I was 32 and I had an 8-year-old to think about. But the Trust were full of empathy and compassion and just listened to me, which is exactly what I needed.”

Cheryl, who received a late diagnosis at 32

Helpline

Our Helpline service has provided practical support and information and a listening ear across phone, email, WhatsApp, and social media, handling over 4,550 enquiries this year. We improved our case recording to ensure a high-quality, consistent service and built capacity through volunteering. As the gateway to all our support services, the Helpline often deals with our most complex enquiries, ensuring people contacting us get the right support at the right time.

100% of those who responded to our feedback surveys said they would recommend our service to others.

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Empowering the CF community through high-quality, accessible information

Last year we updated our extensive information offer with several new and updated resources, including:

• marathon training tips for people with CF

• testing for CF carriers in families

• clinical trials

• staying well over winter.

We updated our newborn diagnosis resource, providing families with sensitive, helpful information at the point of diagnosis, including a new series of e-newsletters to support families through their baby’s first year.

We published two key clinical guidelines: our flagship Standards of Care guidelines, and, for the first time, new guidelines for clinical psychology services. Both guidelines were complemented by accessible lay summaries.

We also responded to ongoing and emerging issues with timely updates on topics such as the Creon shortages, collaborating with clinicians to publish accurate and timely information.

We retained our accreditation with the PIF TICK, a quality kitemark demonstrating our adherence to best practice in the production of health information.

Don’t shy away from the diagnosis now. Encourage people to ask questions and not to Google. Family and friends have been amazing in asking and learning about it from us – as we learn too.”

Sonja, whose daughter Lily has CF *names have been changed

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Dedicated support for children and young people

Our youth programme had a busy and fun-packed year. Building Brighter Futures, our programme for 6–14-yearolds with CF and their siblings, saw 116 children attending 5 courses and 28 one-off events, including foam-clay classes, resilience workshops and science experiments explaining CF symptoms!

Our Youth Advisory Group (YAG) of 14–25-year-olds held 24 meetings, creating a dictionary of CF terms for children and helping steer the Trust’s work for young people.

Strong Beginnings supported parents of children with CF aged 0–6, with events such as peer support groups, Q&A sessions with CF physios, and baby massage classes. 59 parents attended and shared positive testimonies of how the events helped them cope at the start of their CF journey.

We had a conversation the other day about there being a cure for CF one day. He said he doesn’t think he would get rid of it even if he could, because he only gets to do the Zoom workshops because he has CF!”

YAG is always looking for projects and campaigns that help to make our CF community better.”

Tilly, YAG member

Nikolas, whose son Hugo is a member of Building Brighter Futures

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Tilly
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The connections we made have become an essential part of our lives. We now chat almost daily with the parents we met, Work MEIN and having this support system as our little girl Work Forwards employment programme grows up has been truly life Thanks to funding from the National Lottery Community changing. Thinking about it Fund, the Work Forwards programme continued to deliver makes me quite emotional employment, work, and careers support to people affected – we are no longer alone on by cystic fibrosis. We supported advice sessions. We delivered 7 online sessions attended 89 people through 107 this journey”. It meant a lot to have by 87 people, including a webinar on pensions – a first for the CF community, reflecting the changes in CF in Yakov, whose daughter Gabi has CF someone acknowledge the recent years. challenges I’ve been facing Many of our online sessions have been led by people with and provide clear, practical CF, including drama therapy sessions to build confidence guidance to help me move in discussing CF with employers. We continue to share a forward. The conversation broad range of stories of people with CF in a wide range of jobs and careers, reaching thousands of people. felt like a safe space where I could be open about my We also delivered this year’s Helen Barrett Bright Ideas Awards, which provide grants and support around selffrustrations, stress, and employment, and have strengthened our support and anxiety, which was incredibly guidance to applicants this year. This year marks 10 valuable during such a years of the Awards, and we’re particularly delighted that difficult time.” previous Award winners have been actively involved in delivering sessions for our youth programme using their professional experience. Sanjana, who has CF FUND (names have been changed) _@ Bien Cystic Fibrosis Trust | Annual report and financial statements | March 2025 31

Diverse and 32

This year, we’ve continued to find new ways to reach and engage people affected by CF – in the right way, at the right time. We have built new relationships with a diverse range of storytellers who generously share their time and stories with us to support our work, raise awareness and support our community.

We make sure the voice of the CF community is always heard and profiled through the stories we place in the media, on our website and through our fundraising materials. High-profile campaigns like our 60th anniversary and CF Week have been shaped and influenced by people with CF and their families via our active involvement groups.

My wish is that the CF community continues to spread awareness by sharing stories. We can work together to continue fundraising and enlightening the world to the struggles that people with CF go through on a daily basis and show the impact donations make.”

Sophie, who lost her dad to cystic fibrosis

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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CF in the media

We’ve had another incredible year for media, with over 1,000 pieces of media coverage. We would like to thank all the journalists we’ve worked with, and all our spokespeople and storytellers for helping us to raise awareness of cystic fibrosis.

We raised awareness of the Creon shortages with the Sunday Times and the Express, and achieved national coverage with our awareness campaign. The Trust was also mentioned in hundreds of pieces of coverage when NICE approved permanent access to modulators.

Many regional and trade outlets picked up the launch of the CF Innovation Hubs and we also worked with First News on a child-led storyteller piece.

Our Trustee Sophie Pierce embarked on a row across the Atlantic, which gained great regional coverage, and news that the MHRA approved Alyftrek dominated national and regional health news.

We had 1,012 pieces of coverage over the last year with a huge potential editorial reach of over 2 billion.

60th anniversary

We continued to mark our 60th anniversary year, recognising that while there have been significant achievements over the last 60 years, there is still a lot more to do to ensure everyone with CF can live a life unlimited.

We held supporter events, a special awards ceremony, and shared content on the theme of we won’t stop, including a podcast episode with our chief executive David Ramsden and a special edition of CF Life magazine.

I attended Cystic Fibrosis Trust’s 30th anniversary at St James’s Palace in London all those years ago and as Harvey and I live and breathe, today and in the future, it is testament to the hard work and dedication of everyone at Cystic Fibrosis Trust.” Hazel, who has CF

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Social media

Across Facebook, Instagram and TikTok we had an incredible combined reach of 4.7m and over 734,000 impressions across LinkedIn and X.

We’ve continued our social media initiatives, including Research Wednesday, Fundraiser Friday and a monthly CF media round-up, which aim to give space on a regular basis to share CF research news, celebrate the amazing achievements of our supporters, and keep the community updated on everything that is happening in the world of cystic fibrosis.

Our social channels allow us to respond to the CF community in a timely fashion on key themes such as the ongoing issues with Creon, the NICE appraisal of Kaftrio, and the Government’s planned changes to disability benefits. Our ability to turn around video content, quickly enabled us to reassure our community during some challenging moments.

These are some of our top performing posts in 24/25:

• Our top-liked post on Facebook was our post confirming the King will continue as our Patron, with 665 likes and over 21,000 impressions.

• On Instagram, our highest-liked post was our video from CEO David Ramsden on the NICE Kaftrio approval, with 1,605 likes. This fell during CF Week and was a fantastic boost for the community amid ongoing worries around Creon supply.

• On TikTok, we were lucky enough to have Elizabeth Green, who played Jade (a character with CF) on Eastenders, in the office with us to film some Wear Yellow Day content. She answered questions about her experience and what she learned about CF preparing for the role, which accrued 458 likes.

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Actress Elizabeth Green, who played
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Volunteering

Over the last year, we’ve been really grateful for the contribution of our volunteers, supporters and branches and groups, who provide invaluable support. All our volunteers come from a wide range of backgrounds and their individual experience and contribution enriches our work for people affected by CF. We’ve opened more volunteering activities from home, which has allowed more volunteers to support us and who otherwise would not have been able to volunteer. To recognise and acknowledge our volunteers, we celebrated National Volunteers Week in June 2024 and Trustee Week in November 2024.

Being an effective organisation

Our ability to achieve our vision depends on optimising our organisational effectiveness and working culture so that we can be a great workplace where our employees, volunteers, and other supporters are supported to do their best.

For our employees, we nurture this by building a rewarding working environment, and from our staff survey we know that our staff value many aspects of working for Cystic Fibrosis Trust, such as flexible working, a generous holiday entitlement, learning and development opportunities, and engaging communications, including regular briefings led by our CEO. During the last year we relocated to a smaller office with updated technologies and facilitating more effective use of office space, resulting in cost savings and an improved working environment.

As we move into 2025/26, we are in the process of developing our policies and practices to further improve our working culture, and help our people develop new skills and knowledge to continue to support the changing cystic fibrosis community.

I never thought I’d be able to make a difference to people who’ve got the condition right now; I thought it would just be the next generation. So it’s an amazing feeling to know I’ve helped my cousin Donna and how grateful she is for the work I do with the Fakenham branch.”

Sharon receiving another fantastic donation to Cystic Fibrosis Trust

Sharon, from our Fakenham branch

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Events

This year we held a one-day symposium in London for early career researchers (ECRs). The event gave them the opportunity to come together in an informal session, meeting their peers and learning from more experienced CF researchers.

We held a hybrid CF Live community event in Glasgow, to coincide with the European Cystic Fibrosis Society conference which took place in the city in June 2024. We also held an online CF Live later in the year focusing on adult CF care.

The end of 2024 also saw two events to mark our 60th anniversary: a supporter event at the Royal College of Physicians, and an awards ceremony, hosted by Richard Madeley, to showcase and thank members of the CF community.

Our second conference for multidisciplinary teams (MDT) took place in Birmingham in March 2025. The one-day event saw over 150 individuals from MDTs across the UK attend for a series of talks, workshops, and panel discussions.

We also held a hybrid CF Live event for the local CF community in Birmingham the night before the MDT conference, with presentations from Trust staff and local CF centre representatives.

Professor Jo Fothergill presenting at our ECR conference

It was great to see an event just for ECRs – it was intimate, comfortable and not intimidating, and a nice way us to come together.”

Ali*, who attended our Early Career Researcher conference

And in early 2025, we launched the Coffee and Careers webinar series. We are joined by an experienced researcher at each webinar who has a conversation with our host about their career to date, focusing on how they got started, how they ended up where they are now, learning opportunities over the years, and advice for early career researchers.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Celebrities

Our celebrity supporters and ambassadors have continued to provide vital support, awareness and fundraising for the Trust.

A special thank you to our ambassadors:

• James Dunmore, who ran the London Marathon for us in less than three hours, raising vital funds

• Jenny Agutter, who authored our Gift in Wills campaign and officially welcomed guests at our 60th anniversary supporter event

• Richard Madeley, who hosted our 60th anniversary awards ceremony.

We’re also incredibly grateful for support in 2024/25 from Ben Shephard, Vincent Franklin, Jack Kinsey, Annette Badland, Eleanor Matsuura, Roger Black, David Haig and Anna Maxwell Martin.

A huge thank you to all our celebrity ambassadors and influencers who continue to support our vital work!

Sharing stories from our community

We strive to share diverse stories from our community through our blogs and video content. This year we’ve developed multiform content which covers a range of topics, such as CF research, living with CF as a young person, mental health, taking part in clinical trials, neurodiversity, starting a business, bereavement, and more.

We listen to our community to share what’s important and relevant to them, keeping them involved every step of the way to ensure we’re telling their stories in their own authentic voices.

I feel privileged to be an ambassador for Cystic Fibrosis Trust. It’s very important to me to feel that I am, in however small a way, helping people with CF lead the longest and best possible lives.”

Richard Madeley

Richard Madeley hosting our 60th awards ceremony

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Our magazine

CF Life is our twice-yearly magazine, packed with the latest news, features, and real life stories from the CF community. It is mailed to over 20,000 of our supporters across the UK and can also be read online.

To mark our 60th anniversary, this year we published a special edition of CF Life magazine, featuring a fold-out timeline of key milestones from our history.

Our cover story was an interview with supporter and involvement group member Rob. Rob has CF and first featured on the cover of CF Life predecessor, CF News, as a 6-year-old boy to mark the Trust’s 30th anniversary. 30 years later and he shared his story once again.

In 24/25, we also covered topics including:

• transplant and CF

• dealing with a new diagnosis

• research into CF lung infections.

A big thank you to everyone who has contributed to CF Life magazine this year!

Being involved in the Trust’s 60th anniversary has made me reflect on just how different the CF landscape is today than in 1994. I’m looking forward to the next 30 years and being involved in the 90th anniversary!”

Rob

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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CForYourself podcast

Our podcast launched in June 2022 with host Lucy having a cup of tea and a chat with others in the CF community, talking openly and honestly about a whole range of topics. For this year’s series, we asked the community what they wanted us to talk about, and we’ve covered everything from pregnancy to exercise.

Series 3 highlights • 8 episodes

• 1,126 downloads

• Most popular episode: Pregnancy and CF

CForYourself is all about sharing honest insights into life with cystic fibrosis – the good, the bad and everything in between and has been a huge success with our community and beyond. While most of our listeners are in the UK, we’ve also reached the CF community across the world, from Australia to Argentina.

What an exciting episode! The discussion around CF and pregnancy is so important… this podcast is a fantastic resource for anyone navigating pregnancy with CF.”

Emma, podcast listener

Lucy Baxter, host of the CForYourself podcast

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I wanted to be a guest editor for CF News because I am grateful to the Trust for so many things and I wanted to give back to this organisation. I am also an aspiring writer, so this is a great opportunity for me, and I’m happy to be given the chance to write something as personal as my CF.”

Sarah, CF News guest editor

Whatever you do, do it in

CF Week

CF Week is our annual awareness and fundraising week, ending with the brightest fundraising day of the year – Wear Yellow Day! CF Week 2024 focused on 60 years of Cystic Fibrosis Trust, the amazing progress we’ve made during that time, and the work that still needs to be done to ensure everyone with CF can live a life unlimited.

Highlights included:

• We shared a diverse range of stories from across the CF community, including Shanique and Thiago’s, which had over 7,000 views across all platforms.

• Our e-newsletter CF News was guest edited by Sarah from the CF community, who shared her CF journey and being part of the LGBTQIA+ community.

• We aired a special podcast episode which went behind the scenes at Cystic Fibrosis Trust.

• We empowered the CF community to tell their story and share their #CFTruths through our social media platforms.

• Wear Yellow Day raised a fantastic £125,000.

• Celebrities including Ben Shephard, Vincent Franklin, Jenny Agutter and Elizabeth Green all got involved.

• June was a record month for website donations, with over 224 one-off donations.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Uniting in 42

We’d like to take this opportunity to thank all of our incredible supporters, donors, organisations, charitable trusts and foundations, and corporate partners who have supported our work this last year. It is because of you that we can be there for people with CF every step of the way.

In 2024/25, we raised an amazing £6.9m gross and £4.7m net. This was £1m less than last year, mainly due to a decrease in legacy income. We saw growth in several income streams – namely events, in-memory, and trusts. Overall, our income has not returned to pre-pandemic levels and remains impacted by the cost of living crisis and increasing competition for funds.

That said, we continue to innovate and develop our fundraising campaigns and appeals, building on learning from the year before. Our flagship Wear Yellow Day attracted one of the largest number of supporters to date.

It was a pleasure to have the opportunity to mark our 60th anniversary with our supporters and funders, and to reflect on the milestones the Trust and the CF community have experienced together. We also had the opportunity to honour some of the incredible fundraising achievements of our supporters at our 60th anniversary awards.

This year also saw the launch of our new Translational Innovation Hub Network, which builds on the successful model of the original Innovation Hub at the University of Cambridge. The new Network aims to drive a transformative shift in research to develop innovative diagnostic and treatment approaches that support the clinical management of lung health and infections, ultimately improving the quality of life for people living with CF. In partnership with LifeArc, over £3.5m has been committed across the four hubs in its launch year and we are delighted that the Robert Luff Foundation have continued their support for the new Hub Network.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 43

Community and event fundraising

Thanks to all our incredible fundraisers, we have raised an incredible £2,267,000 this year.

Our supporters took part in an array of challenge events, including London Marathon, Edinburgh Marathon, London Landmarks, Great North Run, London to Brighton Bike Ride, and skydives up and down the country. They also headed off around the world to take on overseas treks, marathons and other gruelling challenges. Together, these amazing individuals raised over £1,171,000 for the Trust.

The CF community continue to get behind our Wear Yellow, Festive and FeBrewary campaigns, coming together at key points in the year to show their support. Alongside this, lots of people contributed their own way, just like our very own trustee, Sophie Pierce, who raised funds and awareness and even broke a world record by rowing the Atlantic in her crew of four, in 53 days.

Wear Yellow Day goes from strength to strength, raising £125,000 last year. Over 212 individuals, 145 schools, and 250 parents of children with CF (who form the CF Mamas and Papas) came together to make it one of the biggest and brightest Wear Yellow Days to date.

We are also grateful to have the continued support and dedication from our branches and groups who resolutely raise awareness and funds to support the Trust’s work. The year’s total is £98,000, with activities ranging from carol concerts, fairs and garden parties, to running challenges and celebratory balls.

For me, this row isn’t just a crazy personal adventure, it’s also a chance to reimagine the future of cystic fibrosis and bring hope that one day, everyone with CF will be able to cruise free through life.”

Sophie Pierce (second from right) and members of Team Cruising Free

Sophie, our Trustee, who has CF

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Regular gifts

We’re deeply grateful for our regular donors, whose ongoing support raised an incredible £780,000 in 2024/25, including Gift Aid. Thanks to a telemarketing campaign, we gained an additional £8,300 through upgraded and reactivated gifts. Giving this way is one of the most sustainable ways to support the Trust, allowing us to plan ahead and make a real difference in the lives of those affected by cystic fibrosis, funding life-changing research and vital care.

Gifts in Wills

Supporters leaving a gift in their Will to Cystic Fibrosis Trust continue to make an extraordinary and lasting difference, funding groundbreaking research and crucial support services for people with cystic fibrosis.

Thank you to everyone who has chosen to support us in this very special way, with particular appreciation in 2024/25 for the 117 gifts received and 72 gifts pledged. These considered acts of kindness bring us closer to a future where everyone can live a life unlimited by cystic fibrosis.

Giving through gifts in Wills remains a vital contribution to the current and future work of the Trust. This year our legacy appeal had a fantastic response rate of 14%, with more supporters making the choice to have a positive impact on our futures.

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ON i, pita! whan pile 5
Pamela and her son
Max, who has CF wee a Le
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I started the CF Mamas fundraising group a few years ago after speaking to some special CF mummies. We wanted to do something as a big group and not only raise very important funding but also awareness.”

Pamela, on setting up CF Mamas and Papas

We continued to highlight the importance of having an up-to-date Will and promoted our free Will offers, helping supporters to be in control of their wishes and make a difference to causes that are close to their heart.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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In memory

We are profoundly grateful to everyone who has donated in memory of someone special. In 2024/25, over £250,000 was given in expression of love, remembrance, and a shared commitment to a future where everyone with CF can live free from the limits of the condition.

These gifts create real and lasting impact, and play a vital role in supporting our work.

Many families and friends chose to commemorate their loved ones through our Book of Remembrance, dedication wall, or personal tribute funds. These meaningful spaces provide comfort and connection, allowing memories to be celebrated and shared.

To those who have chosen to honour a life in this way – thank you. Your generosity keeps memories alive and offers support and hope to others affected by cystic fibrosis.

As a family tradition, we choose not to send Christmas cards and instead donate this money to the Trust so it can be put to good use and help families similar to us. Cystic Fibrosis Trust has meant so much to me and my family since Dad passed because of their aim to spread awareness, find treatments and support people with CF alongside their families.”

Sophie, who lost her dad Paul to CF

Sophie and family ,

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Corporate partnerships

Building partnerships with existing and new corporate partners helps us raise both funds and awareness for the Trust. Crane CPE funded us for the sixth year running from their Crane Widows and Children Fund, and the skills and expertise of the Bip Group assisted us in ensuring that our Helen Barrett Bright Ideas Awards continue to support entrepreneurs with CF to launch or grow their businesses.

We were delighted to be named as charity of the year by Project Leaders, Atlantic Pumps, and Pyvital. Events such as the UK CF Clinical Trials Conference, UKCFC, and the Annual Registry Meeting are essential in showing the work we do. This would not be possible without the support of our sponsors, some of whom come back year after year. Our MDT conference, held in Birmingham in March 2025 with sponsorship from Recode Therapeutics, Enterprise Therapeutics, Essential Pharma and Nordice Pharma, was a standout event for us this year.

We would also like to thank our partners who have shared their expertise and resources with us this year, including Bird and Bird, and Cushman and Wakefield. We would like to thank Bauer Media Outdoor (formerly Clear Channel) for their gift-in-kind outdoor advertising to help support our vital awareness campaigns.

Philanthropy

Without the help of the Joseph Levy Education Fund grant, my university experience would have been completely different. The support that was there allowed me to pursue my degree knowing that I would be able to handle both university life and keep myself well.”

We would like to thank the generous and committed support of trusts, foundations, and the National Lottery Community Fund, whose grants have been critical to our provision of services and new programmes for the CF community, alongside world-leading research.

We are especially thankful for our long-term partners, the Robert Luff Foundation, the Joseph Levy Foundation, and Garfield Weston Foundation.

Thanks to the generosity of these supporters, over the last year we have continued to ensure that people with CF can live a life unlimited. This has included progressing vital research, helping young people to build their futures and offering grants through our Winter Support Fund.

Emily, who has CF

We are also deeply grateful for the committed support of our Sixty Five Roses Club members who are able to support us with a minimum donation of £1,000 each year. The Club is thriving, with over 70 members now helping to fund projects that support people with CF when they need us most.

Supporter experience

The Trust received 19 complaints in 2024/25. This is broadly in line with the 29 received in 2023/24, and 19 in 2022/23, with the main areas of improvement being more effective use of data (fewer mailing-related errors) and in dealing with sensitive subjects (like bereavement). Complaints are closely monitored and reviewed by senior management on an ongoing basis. In addition, we regularly review our complaints policy and processes to make it easier for people to give us feedback and to ensure that we listen and learn from what our supporters and community are telling us.

Looking to

I want to be able to inspire people. I’m 40 now, and I have friends with kids with CF. It’s important for me to be able to say I’m 40, I have a full time job, and I can do all these amazing things as well.” Rich, who has CF

Uniting in research for a life unlimited

We continue to work towards our research goals, guided by the priorities of the CF community. By funding innovative, world-class research and maximising our research partnerships, we’re committed to improving the lives of a diverse CF community. We’re excited about the potential of our partnership research programmes, such as CF AMR Syndicate and the Translational Innovation Hub Network, to improve the lung health for everyone with CF.

We’re constantly seeking new partnerships and attracting companies to develop their products with the CF community in the UK. We offer combined research support to deliver trials that are easy to set up, efficient and meaningful, and could make a difference to people with CF and their families.

It’s a very exciting time in CF care. For 34 years of my life, there didn’t seem to be any huge advancements, and now they are coming thick and fast. In all honesty, it’s the most hopeful I’ve ever felt, and that’s comforting as someone approaching 40 that didn’t even think I’d be here, let alone experiencing these huge leaps forward in treatment.”

Sarah, who has CF

Early phase trials being supported by our CTAP programme will continue to assess medicines for people who can’t benefit from modulators. Studies using UK CF Registry data will continue to monitor the longterm effects of modulators and help us better understand the changing nature of CF.

Sarah

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Being great fundraisers

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Cystic Fibrosis Trust have been amazing and the research and developments that have come about as a result of the charity’s efforts has been incredible to see. Kaftrio has made a huge difference for me and my brother, but I know it’s not a cure and some people can’t benefit from it, so I’m determined to run for everyone in the CF community.”

Growing our income remains a key priority at the Trust so that we can build on the progress we have made, and make sure that in 2025 and beyond people with CF can live their lives without limits.

Next year we are embarking on a new fundraising strategy, with a renewed focus on building our supporter numbers and ensuring they have an excellent experience of supporting the Trust. Innovation will continue to run through our plans across all income areas, so we can offer a diverse portfolio of engaging and exciting ways for people to get involved – be that in their own time; participating in challenge events; or by taking part in one of our mass participation campaigns. We plan to develop more multi-year relationships with trusts and launch a new giving circle to help accelerate funding for our research programmes. Alongside this we will continue to fundraise to meet our £1.5million contribution towards the Translational Innovation Hub Network.

We want to get closer to our supporters, branches, CF centres, and corporate partners to work together to raise funds as one community with a shared purpose to improve the lives of people with CF and their loved ones.

Campaigning hard

Looking ahead, our advocacy will continue to focus on critical issues impacting the CF community. The impact of toxic air quality remains a significant concern, and later this year we will leverage findings from our commissioned research with the York Health Economics Consortium to advocate for stronger environmental policies.

The Government’s emphasis on science and innovation presents opportunities to advance CF research and treatment. We will advocate for policies that support research funding, innovation, and improved mobility for scientists, accelerating progress in CF care.

With a new legislative agenda unfolding, we remain vigilant, ready to respond to policy reviews and budget announcements as we have on the Government’s Pathways to Work social security reforms. Our commitment is unwavering: to seize every opportunity to advocate for improved care, support, and a future free from the limitations of cystic fibrosis.

Nell, who has CF

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Day-to-day support

We continue to develop our services and resources to meet changing needs, while maintaining our core provision.

This year, we’ve strengthened our peer support provision, recognising the importance of providing safe spaces for the CF community to come together and support each other. We have piloted new online events, continued to develop our online community, and provided updated training to our CF Connect volunteers, who provide parent-to-parent support over the phone. We have now shaped a clear forward strategy for peer support, highlighting the key role it plays in supporting emotional wellbeing and physical health. Over the year ahead, we will be developing this further with a view to seeking funding to expand our peer support provision.

We have been working with another national charity to explore ways to provide enhanced grief support to those bereaved by CF, and we will be taking this partnership forward in the year ahead.

Over the coming year, we will be developing information to support people with CF to manage their mental health and wellbeing, and starting work on updating our information around family planning, as well as continuing with updates to our guideline documents, including antimicrobial treatment, infection prevention and control, physiotherapy, and nutrition.

We will also be developing our work to support those in the CF community who are neurodivergent.

When Jacob was first diagnosed, the CF nurse at the hospital handed us a pamphlet from the Trust explaining what CF is. It helped us to have that Jacob information in one place and meant I didn’t go searching on Google, which would have been the worst thing for me to do.”

Morag, whose son Jacob has CF

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Quality improvement and clinical engagement

In 2025/26, we will report on findings from our first ever survey for CF professionals, which looks at how CF care and workload are evolving from the perspective of those working in the specialty. Data collection started in March 2025 and findings are anticipated in the early summer.

In October, new data will be collected on staffing levels in CF services as part of our annual CF staffing tool. And in November, we will open the third cycle of our patient experience survey in children’s services.

We are continuing to roll out and expand our quality improvement support offer for CF centres, to support them to explore their data insights and plan targeted quality improvement activities.

The UK CF Registry

The UK CF Registry remains at the forefront of collaborative innovation, continuously expanding its portfolio to better serve people with CF. We are developing a new purpose-built CFSPID Registry. In parallel, we are partnering on new research initiatives, including projects focusing on pregnancy and cystic fibrosis.

With the CF community evolving in size and age, new opportunities and challenges emerge, particularly for the NHS and CF teams dedicated to providing the best quality care to people with CF.” CEO David Ramsden

The Registry continues to support collaborative studies monitoring the long-term health outcomes of Kaftrio, with publication of results expected in 25/26 alongside plans to present results at international conferences.

As the structure of the NHS evolves with the dissolution of NHS England, we are committed to maintaining strong partnerships with NHS organisations to ensure alignment with national priorities that will benefit people with CF.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Financial review

Results for the year

Over the last 12 months, like many charities, the Trust has faced challenges in maintaining income due to the wider economic climate. Therefore, the Trustees approved a business plan with a deficit budget for the financial year which assumed reduced income and reduced grant awards whilst maintaining services and support at a level similar to previous years.

The result for the year, excluding movements on investments, was a deficit of £1.8m (2024: deficit of £0.4 million) which is £0.4m better than budget, largely due to efficiencies and cost reductions made during the year.

Total income of £12.0m is £2.6m lower than in 2024, whilst total expenditure has decreased by 8% (£1.3m), which is principally due to a reduction in grant awards (and unclaimed grant commitments recredited to our accounts).

This deficit has been funded from unrestricted reserves. As explained below (see Reserves, page 58), despite the deficit in the year, the Trust continues to hold strong reserves. The Trustees have agreed a four-year financial plan to increase income whilst broadly maintaining activity at current levels. The aim is to deliver a balanced position by March 2029, while ensuring that the Trust maintains reserves within its reserves policy.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 55

Income

Income 2024/25

The Trust’s income from normal activities for the year to March 2025 was £12.0m (2024: £14.7m).

Voluntary income of £6.5m (2024: £8.0m) includes amounts from regular giving programmes and appeals, from branches, groups and communities, corporate partnerships and trusts. In common with many charities, the on-going cost of living crisis means that generating voluntary income remains challenging. Whist individual giving income is broadly similar to last year, income from trusts has reduced by £0.9m, primarily due to receiving a £1.2m donation in the prior year for a specific research project.

Legacy income of £2.0m is £0.6m less than in 2024, a year in which the Trust benefitted from several exceptional large gifts.

Income generated by Cystic Fibrosis Services Ltd (“CFSL”), the Trust’s trading subsidiary, was £1.3m (2024: £1.3m). This income is mainly generated from contracts with pharmaceutical companies for our UK CF Registry to produce study reports for the regulators of medicinal products. The company expects to confirm contacts to support further studies within the next few months which will secure further income over the next three years.

We benefit from generous corporate donations in kind including outdoor advertising and advice supporting our campaigns. The value of these services was £1.3m (2024: £1.5m). The corresponding cost value of this donation is included in charitable expenditure as part of the information, advice and support costs.

Other income of £0.9m in the year (2024: £1.2m) includes investment income, contracts for services and recoverable VAT.

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Other income
8%
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Donated goods and services
11%
Voluntary and
trust income
54%
Cystic Fibrosis
Services Limited
11%
Legacies
16%
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Expenditure

The Trust’s total expenditure for the year was £13.8m, a £1.3m decrease compared to the previous year.

Expenditure on charitable activities in the year was £11.0m (2024: £12.3m). This includes funding research, providing information and advice and support and promoting the best clinical care. The reduction in costs is due to careful cost control during the year, which included a reduction in staff headcount and reduced research grant expenditure. Grants to support charitable activities included:

• £2.7m (2024: £3.9m) grants to a range of medical, academic and charitable institutions to support research. The Trust continues to seek funding and co-funding to enable it to increase funding for this vital research. The Trust also reviewed grants made in previous years where there has been no recent activity, and this resulted in £0.5m (2024: £0.3m) of grants made in previous years being recredited to our accounts

• £0.3m (2024: £0.4m) to fund the salaries of clinical trial coordinators as part of the Clinical Trials Accelerator Platform (CTAP) programme

• £0.3m (2024: £0.3m) grants to CF Centres to fund data collection for the Registry

• £0.3m (2023: £0.3m) to individuals through our Welfare Grant programme

(The total grants awarded are detailed in Note 5 to the financial statements.)

The cost of raising funds was £2.8m (2024: £2.7m).

Expenditure 2024/25

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----- Start of picture text -----
Costs of raising funds Cystic Fibrosis Services Limited
21% 2%
Research
35%
Clinical Care
10%
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----- Start of picture text -----
Information, advice and support
32%
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025

57

Investment policy

The Trust holds significant investments in cash and cash equivalents, and in a managed investment portfolio.

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----- Start of picture text -----
2025 2024
£’000 £’000
Cash and cash equivalents 11,558 12,024
Managed investment portfolio 5,835 5,796
Total 17,393 17,820
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The Finance and Audit Committee has responsibility for setting investment policy and overseeing the investment portfolio. The overall investment objective is to adopt a balance between generating sufficient income to support the on-going activities of the Trust, whilst maintaining the real capital value of the investments over the long-term.

The majority of the managed investment portfolio is kept in liquid funds although there is some exposure to less liquid assets such as property. Approximately 84% of the portfolio is now invested in the Responsible Multi-Asset Fund which aims to have a positive impact on people and the planet by avoiding harm through environmental, social, and governance integration and exclusions, benefiting stakeholders through responsible business activities and contributing to solutions through influence and investing for impact. The remaining funds are invested across various funds including the Charities Property Fund, Trojan Ethical Fund and the Columbia Threadneedle Responsible Equity Fund. The Trust does not permit direct investment in tobacco.

A number of small endowment funds are invested on a total return basis, enabling the Trust to utilise both income generated by the funds and increases in capital value, while protecting the original inflation-adjusted endowment values.

We also hold cash reserves to maintain working liquidity and provide for current grant commitments in full. The performance of investments is monitored on a quarterly basis. The policy is reviewed annually by the Finance and Audit Committee.

Review of investments in the year

The value of the investment portfolio (including endowment funds) was £5.8m as at 31 March 2025 (2024: £5.8m). Due to market conditions, there was no significant investment gain in the year. The Trusts targets a return of CPI plus 3%. Since the end of the financial year market conditions have been volatile, but despite losses in April, at the date of this report the value of the investment portfolio has increased to over £6.0m. No change was made to the allocation between amounts held as stocks and shares and that held as cash in the portfolio.

Income generated on investments totalled £0.7m (2024: £0.6m).

Reserves

The Trust has a reserves policy which is based on best practice as set out by the Charity Commission in CC19 Charity reserves: building resilience. The Trustees actively review the Trust’s reserves to ensure that the Trust has sufficient funds to support future activities and meet all its commitments and obligations.

The Trust holds the following reserves:

Restricted funds which are to be used for specific uses specified by the donor. Expenditure which meets the donor’s criteria is charged against the specific fund. At 31 March 2025 restricted funds totalled £0.5m (2024: £0.5m). Note 21 lists the individual restricted funds and their movement in the year.

Endowment funds where the donor requires the Trustees to hold the funds as capital investments. Income from the investment can be used by the Trust as specified in the terms of the endowment. The Trust is not entitled to spend the capital fund without permission from the donor. At 31 March 2025 the endowment funds totalled £1.0m (2024: £1.0m). See note 20 for information about the individual endowments.

Designated funds which are funds that the Trustees have set aside for specific projects or initiatives. There are three designated funds:

• Organisational reserve: £0.8m (2024: £1.0m) has been established for investment in process improvement and our digital/data strategy, including implementation of a new Customer Relationship Management (CRM) system.

• Fixed asset reserve of £0.06m (2024: £0.13m). The reserve is maintained as fixed assets cannot be readily realised as cash.

• Research fund reserve of £0.5m (2024: £nil). As explained in note 5 (page 80) various grants awarded in previous years totalling £465,000 were credited back to reserves in the year. This was either due to the full grant value not being required by the grant recipient by the end of the project lifecycle, or an application for matched funding (upon which the Trust’s funding was dependent) not being successful. The Trustees consider that the funds have been committed to fund research and that this commitment remains. Therefore, they have created a designated fund for future research.

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Retained Reserves which can be used to fulfil any part of the Trust’s objectives.

The Trustees have adopted a reserves policy designed to ensure the Trust maintains sufficient funds to continue its activities, particularly in light of recent economic volatility.

The Trustees have set a minimum level of retained reserves and an upper target with the aim that unrestricted funds fall within this range. In setting this core reserves range the Trustees have considered:

• The level of reserves required to mitigate income risk. This includes the challenge of fundraising in the current economic environment and the risks associated with not securing further contract income for the UK CF Registry.

• The risk of not being able to contain costs in line with future saving targets.

• Risks of a significant fall in the value of the Trust’s investment portfolio due to market volatility and the impact of falling interest rates.

• Maintaining sufficient working capital headroom.

Based on the 2025/26 budget and a review of the above risk factors, the target core reserves range is between £4.0m and £6.5m.

At 31 March 2025 the Trust’s retained reserves were £6.7m (2024: £8.7m) which is slightly above this core reserves range. The Trustees approved a detailed business plan with a deficit budget for the next financial year which maintains services and grant awards at a level similar to last year and which will bring the Trust’s retained reserves within this core range. (Retained reserves are forecast to be £5.3m at March 2026 and reduce further to £5.0m by March 2027.)

Having CF doesn’t stop you from doing the things you’re passionate about, no matter what that may be.” Rosie

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Principal risks and uncertainties

The Board of Trustees is responsible for ensuring effective risk management and internal controls to manage the major risks the Trust faces, including agreeing the Trust’s ‘risk appetite’ (how much risk the Trust is willing to tolerate in key areas) and keeping oversight of the Trust’s risk management framework. This framework, managed by the Senior Leadership Team, includes a Strategic Risk Register and provides a consistent approach to identifying, assessing and dealing with the risks facing the Trust. It is monitored at least quarterly to support informed decision-making and ensure appropriate mitigations and controls are in place to effectively manage any risks to our objectives.

The main strategic risks and uncertainties that management and Trustees have identified and the key actions to mitigate these risks are:

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----- Start of picture text -----
Strategic risk Strategies/plans for managing risks
Relevance
• Failure to be relevant and responsive to the needs and expectations of people with • Our strategies and work programmes reflect the views and priorities expressed by
cystic fibrosis and our wider community could damage our reputation and ability to people with cystic fibrosis through consultation, involvement and co-design.
deliver our objectives.
• Our Equity Diversity and Inclusion Strategy reinforces our commitment to listening and
• Failure to get our message across in a way that conveys the impact of our work representing the full range of stakeholders across our community.
means we will not be seen as relevant and will not reach widest possible audience,
and damage our reputation, losing support, credibility and income. • We have detailed audience insight research analysis and are implementing the findings.
• Failure to Influence key external stakeholders and decision makers will impede our • We continually develop strategies on emerging priorities, including Air Quality, Housing,
Poverty, CF Care resourcing, and benefits and welfare reform.
ability to deliver on our strategy and erode our relevance in eyes of the community.
• Policies and processes in place to ensure quality control and the relevance of our
messaging, including ‘red flag’ processes on potentially sensitive communications.
• Our close links with the community, and ability to listen and closely monitor discussions
and sentiment, gives us early warning on many emerging community priorities/issues.
Financial
• Failure to operate a sustainable financial model could heavily compromise the • The strategic financial framework for the next four years and budget for 2025/26
Trust’s operational viability and its ability to deliver for people with cystic fibrosis. includes measures to closely track income and expenditure and is scrutinised by the
Finance and Audit Committee. Our plans ensure that we will maintain unrestricted
retained reserves within policy.
• The new Fundraising strategy focusses on maximising sustainable net income,
including exploring innovative new sources of income.
• Our business planning has strong focus on prioritisation, and additional cost
savings are actively explored.
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Strategic risk	Strategies/plans for managing risks	Processes in place regarding risk management and internal control include the following: • A risk management framework that meets the Charity Commission’s requirements. A top-down risk review by the Senior Leadership Team, and a bottom-up review by individual functions, is undertaken throughout the year and the risks identifed through this process are documented in a risk register. • The Finance and Audit Committee receives reports from the external auditors on the efectiveness of controls and, where appropriate, adopts the recommendations made in the external auditors’ reports. • The Board of Trustees receives a comprehensive risk management report each quarter to assist it in ensuring that an efective process is in place. This report provides an update on the risk reviews undertaken and provides the Board with the opportunity to engage in dialogue about, and to provide input into, the evaluation and management of key risks. • Formal project delivery groups are established for major projects and programmes to ensure that these are carefully planned, managed and implemented.
Data • Failure to optimise our use of and adequately protect our data will limit our impact, reach, income and relevance, and harm our reputation if it falls into the wrong hands.	• We have a GDPR compliance framework, Data Protection Policies and Data Protection Ofcer. There is ongoing staf training. • We have implemented a data strategy with the focus on three strands: upgrading our CRM, ensuring data quality and ensuring we have a data-centric culture. • We continually review our data security including access controls (e.g. multifactor authentication) and utilise automated monitoring and reporting. • We have implemented a new AI policy and will continue to review this rapidly developing area.
People • Failure to deliver People Strategies that efectively support, protect, and develop our staf and volunteers will erode our ability to recruit and retain highly skilled and motivated staf and could have signifcant reputational impact.	• We have a comprehensive range of policies in place covering welfare, safeguarding, recruitment and retention, learning and development and employee benefts. These are reviewed and updated regularly with external professional support. Trustees have oversight of these through the People Committee. • There is a strong communications, feedback and learning processes in place (CEO briefngs, staf survey, elected employee reps, exit interviews).
Autonomy • Failure to maintain autonomy in relationships with pharma, academic institutions and funding partners will compromise our relationships with the wider clinical community and may harm our reputation.	• Our governance processes include systematic declaration of interests, confict of interest guidelines and robust research governance and awards processes. • Partnership working and ethical policies are in place defning criteria for establishing new partnerships to ensure risk is considered.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Our work with the

pharmaceutical industry

Our mission is to make sure everyone can live without the limits of cystic fibrosis. Our community will improve care, speak out, support each other and fund vital research as we race towards effective treatments for all.

Partnerships between medical research charities and the life sciences industry can help us deliver that mission and bring huge benefits to patients including accelerating the development of new drugs and ensuring the safety and improvement of existing treatments.

We run the following flagship programmes involving pharmaceutical industry partners:

The UK CF Registry

Long-term safety and efficacy studies of drugs available to people with CF across the UK are supported by the Trust’s UK CF Registry. The cost of the Registry team producing study reports for the regulators of medicinal products is covered by pharmaceutical companies holding the market authorisation for these medicines. You can read more about our work with industry to make medicines safer at cysticfibrosis.org.uk/registry .

In 2024/25 Cystic Fibrosis Services Ltd, the Trust’s trading subsidiary, received £1.3m (2024: £1.3m) in fees for this service. This income was used to support and maintain the Registry, including staff costs, data collection through

Centre grants and IT hosting and development.

Clinical Trials Accelerator Platform

CTAP is a UK-wide initiative bringing together CF centres to increase participation and access to CF clinical trials. This initiative is building infrastructure and funding additional research capacity to support the life sciences industry with commercial clinical trial delivery.

As part of our collaboration with industry, CTAP offers a centralised feasibility service to support pharmaceutical companies with identification of suitable CF centres for clinical trial delivery.

Venture & Innovation Awards (VIAs)

VIAs support transformational and innovative research projects by providing financial support and bringing funding into the field of CF from external sources, including the life sciences industry.

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Sponsorship and donations

The Trust seeks sponsorship and grants from pharmaceutical companies to ensure we have the funds to run the events that we know are so important for healthcare professionals and people affected by cystic fibrosis. These events enable us to keep these audiences informed on vital aspects of clinical care and research.

We would like to thank Vertex who provided Independent Medical Education Grants for the UK Clinical Trials Conference in March 2024, the Early Career Researchers conference in October 2024 and the Multidisciplinary Team (MDT) Conference in March 2025. Recode Therapeutics were our headline sponsors at the MDT conference in March 2024 and sponsored our CTAP conference in March 2024 for which we were most grateful. Thanks also go to Enterprise Therapeutics, Essential Pharma and Nordic Pharma for their sponsorship support of the MDT conference.

Statement of Trustees’ responsibilities

The Trustees, who are also directors of the Cystic Fibrosis Trust for the purposes of company law, are responsible for preparing the Trustees’ report (including the Group Strategic Report) and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the Trustees to prepare financial statements for each financial year. Under company law the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charitable company and the group, and of the incoming resources and application of resources, including the income and expenditure of the charitable group for that period.

In preparing these financial statements, the Trustees are required to:

• select suitable accounting policies and then apply them consistently,

• observe the methods and principles in the Charities SORP,

• make accounting estimates that are reasonable and prudent,

• state whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements; and

• prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable group will continue in business.

The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charitable company and the group’s transactions and disclose with reasonable accuracy at any time the financial position of the charitable group and enable them to ensure that the financial statements comply with the Companies Act 2006, the Charities and Trustees investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 (as amended), the Charity (Accounts and Reports) Regulations 2008 and the provisions of the charitable company’s constitution. They are also responsible for safeguarding the assets of the charitable company and the group and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The Trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable group’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

So far as each of the Trustees is aware at the time the report is approved:

• there is no relevant audit information of which the company and the group’s auditors are unaware,

• the Trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information.

This Trustee’s Report incorporating the Strategic Report was approved and authorised for issue by the Board of Trustees on 30 July 2025 and signed on its behalf by:

Richard Hunt, Chairman

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

63

Independent auditor’s report to the members and trustees of Cystic Fibrosis Trust

Opinion

We have audited the financial statements of Cystic Fibrosis Trust (the ‘charitable parent company’) and its subsidiary (the ‘group’) for the year ended 31 March 2025 which comprise consolidated statement of financial activities (incorporating the income and expenditure account), the consolidated and charity balance sheets, the consolidated statement of cash flows, the principal accounting policies and the notes to the financial statements. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 ‘The Financial Reporting Standard applicable in the UK and Republic of Ireland’ (United Kingdom Generally Accepted Accounting Practice).

In our opinion, the financial statements:

• give a true and fair view of the state of the group’s and of the charitable parent company’s affairs as at 31 March 2025 and of the group’s income and expenditure for the year then ended;

• have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the group in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

• have been prepared in accordance with the requirements of the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and regulation 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended).

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Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the group and charitable parent company’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

Other information

The trustees are responsible for the other information. The other information comprises the information included in the annual report and financial statements, other than the financial statements and our auditor’s report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

65

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

• the information given in the trustees’ report, which is also the directors’ report for the purposes of company law and includes the strategic report, for the financial year for which the financial statements are prepared is consistent with the financial statements; and

• the trustees’ report, which is also the directors’ report for the purposes of company law and includes the strategic report, has been prepared in accordance with applicable legal requirements.

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the group and the charitable parent company and its environment obtained in the course of the audit, we have not identified material misstatements in the trustees’ report including the strategic report.

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 and the Charities Accounts (Scotland) Regulations 2006 (as amended) requires us to report to you if, in our opinion:

Responsibilities of trustees

As explained more fully in the trustees’ responsibilities statement, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the group’s and the charitable parent company’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the group or the charitable parent company or to cease operations, or have no realistic alternative but to do so.

• proper and adequate accounting records have not been kept by the charitable parent company, or returns adequate for our audit have not been received from branches not visited by us; or

• the charitable parent company financial statements are not in agreement with the accounting records and returns; or

• certain disclosures of trustees’ remuneration specified by law are not made; or

• we have not received all the information and explanations we require for our audit.

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Auditor’s responsibilities for the audit of the financial statements

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of noncompliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

• The engagement partner ensured that the engagement team collectively had the appropriate competence, capabilities and skills to identify or recognise noncompliance with applicable laws and regulation;

There are inherent limitations in

our audit procedures described above. The more removed that laws and regulations are from financial transactions, the less likely it is that we would become aware of noncompliance. Auditing standards also limit the audit procedures required to identify non-compliance with laws and regulations to enquiry of the trustees and other management and the inspection of regulatory and legal correspondence, if any.

Material misstatements that arise due to fraud can be harder to detect than those that arise from error as they may involve deliberate concealment or collusion.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at www.frc.org.uk/ auditorsresponsibilities . This description forms part of our auditor’s report.

Use of our report

This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and to the charity’s trustees as a body, in accordance with Section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and Regulation 10 of the Charities Accounts (Scotland) Regulations 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

Shachi Blackmore (Partner)

For and on behalf of Buzzacott Audit LLP, Statutory Auditor 130 Wood Street,

London EC2V 6DL

Date – 30 July 2025

• We identified the laws and regulations applicable to the charitable parent company and group through discussions with key management;

Buzzacott Audit LLP is eligible to act as an auditor in terms of section 1212 of the Companies Act 2006.

• We focused on specific laws and regulations which we considered may have a direct material effect on the accounts or the activities of the charitable parent company and group; and

• We assessed the extent of compliance with the laws and regulations identified above through making enquiries of key management and review of minutes of trustees’ meetings.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Cystic Fibrosis Trust

Consolidated statement of financial activities For the year ending 31 March 2025

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Unrestricted Restricted Endowment Total Funds Total Funds
Note Funds Funds Funds 2025 2024
£’000 £’000 £’000 £’000 £’000
Income and endowments from:
Donations and legacies 2 7,468 2,564 - 10,032 12,402
Charitable activities
Other trading activities 1,257 - - 1,257 1,304
Investments 3 655 - - 655 628
Other income 70 - - 70 332
Total income 9,450 2,564 - 12,014 14,666
Expenditure on:
Raising funds 4 2,841 4 - 2,845 2,748
Charitable activities
Research 4 3,584 1,526 2 5,112 6,409
Clinical care 4 672 749 - 1,421 1,477
Information, advice and support 4 4,192 262 - 4,454 4,460
Total charitable activities 8,448 2,537 2 10,987 12,346
Total resources expended 4 11,289 2,451 2 13,832 15,094
Net (expenditure)/income before
investment gains/(losses) (1,839) 23 (2) (1,818) (428)
Realised investment losses - - - - (2)
Unrealised investment gains/(losses) 19 70 - (30) 40 413
Net investment (losses)/gains 70 - (30) 40 411
Net (expenditure)/income (1,769) 23 (32) (1,778) (17)
Transfers between funds 19 35 (35) - - -
Net movement in funds (1,734) (12) (32) (1,778) (17)
Reconciliation of funds:
Total funds brought forward 9,840 468 1,032 11,340 11,357
Total funds carried forward 19 8,106 456 1,000 9,562 11,340
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All of the operations are continuing. There were no recognised gains or losses other than those stated above. A prior year comparative consolidated statement of financial activities has been included in the notes to the accounts (note 22).

The notes on pages 72 to 95 form part of these financial statements.

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Cystic Fibrosis Trust

Consolidated and charity balance sheets For the year ending 31 March 2025

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----- Start of picture text -----
Consolidated Charity
Notes Total Total Total Total
2025 2024 2025 2024
£’000 £’000 £’000 £’000
Fixed assets
Tangible assets 7 64 132 64 132
Investments 8 5,835 5,796 5,835 5,796
5,899 5,928 5,899 5,928
Current assets
Debtors 9 2,996 5,076 2,934 5,041
Cash held as short term investment 11,558 12,024 11,558 12,024
Cash at bank and in hand 2,584 4,046 2,576 4,036
17,138 21,146 17,068 21,101
Liabilities
Creditors: amounts falling due
within one year
Grants payable 10 (5,444) (6,235) (5,444) (6,235)
Creditors and accrued charges 11 (2,714) (2,772) (3,494) (3,625)
(8,158) (9,007) (8,938) (9,860)
Net current assets 8,980 12,139 8,130 11,241
Creditors: amounts falling due
after one year
Grants payable 10 (5,317) (6,727) (5,317) (6,727)
Total net assets 9,562 11,340 8,712 10,442
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Continued on the next page

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

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Cystic Fibrosis Trust

Consolidated and charity balance sheets (continued) For the year ending 31 March 2025

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----- Start of picture text -----
Consolidated Charity
Notes Total Total Total Total
2025 2024 2025 2024
£’000 £’000 £’000 £’000
The funds of the charity:
Endowment funds 20 1,000 1,032 1,000 1,032
Restricted income funds 21 456 468 456 468
Unrestricted funds
Designated reserves
Organisational reserves 19 868 1,000 868 1,000
Fixed asset reserve 19 64 132 64 132
Research fund reserve 19 465 - 465 -
Total designated funds 1,397 1,132 1,397 1,132
Retained reserves 6,709 8,708 5,859 7,810
Total unrestricted funds 8,106 9,840 7,256 8,942
Total charity funds 19 9,562 11,340 8,712 10,442
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The notes on pages 72 to 95 form part of these financial statements.

Approved and authorised for issue by the Trustees on 30 July 2025 and signed on their behalf by:

Richard Hunt, Chairman Company number 3880213

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Cystic Fibrosis Trust Consolidated Statement of cash flows For the year ending 31 March 2025

Notes to cash flow statement

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----- Start of picture text -----
2025 2024 Notes to cash flow statement
£’000 £’000 Note A – Reconciliation of net income to net cash flow from operating activities
Net cash provided by/(used) operating activities (Note A) (2,584) 565 2025 2024
£’000 £’000
Cash flows from investing activities:
Net income for the reporting period (as per the statement of (1,778) (17)
Dividends and interest 655 628 financial activities)
Purchase of property, plant and equipment - (41)
Purchase of investments - (255) Adjustment for:
Movement in cash awaiting investment 1 (21) Depreciation charges 68 64
Proceeds of sales of investments - 279 Dividends and interest from investments (655) (628)
656 590 (Gains)/losses on investments (40) (411)
Decrease/(increase) in debtors 2,080 1,513
(Decrease)/increase in cash held as short term investments 466 (539)
Increase/(decrease) in creditors (2,259) 44
(Decrease)/increase in cash (Note B) (1,462) 616
Net cash (used in)/provided by operating activities (2,584) 565
No separate reconciliation has been prepared between the movements in net debt of the
charity as there is no difference between the movements in cash and cash equivalents and the Note B – Reconciliation of cash and cash equivalents in the reporting period
net cash (debt) of the charity. 2025 2024
£’000 £’000
Cash and cash equivalents at the beginning of the 16,070 14,915
reporting period
Change in cash and cash equivalents in the reporting period (1,462) 616
Increase in short-term investments (466) 539
Cash and cash equivalents at the end of the reporting
period
(being cash at bank and in hand and cash held as short-term 14,142 16,070
investments)
2025 2024
£’000 £’000
Analysis of cash and cash equivalents:
Notice deposits (less than 3 months) 11,558 12,024
Cash at bank and in hand 2,584 4,046
Total cash and cash equivalents 14,142 16,070
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025

71

Cystic Fibrosis Trust

Notes to the Financial Statements For the year ending 31 March 2025

1. Accounting policies

The principal accounting policies adopted, judgements and key sources of estimation uncertainty in the preparation of the financial statements are as follows:

Basis of preparation

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) (Charities SORP FRS 102), and the Companies Act 2006.

Cystic Fibrosis Trust meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).

Charity status

The Trust (charity registration number 1079049) is a company limited by guarantee, with company number 03880213 and registered address One Aldgate, London EC3N 1RE. The members of the company include the Trustees named on page 96. In the event of the company being wound up, each member is liable for a sum not exceeding £1.

Consolidation

The financial statements include the results and assets and liabilities of the Trust and its wholly owned subsidiary Cystic Fibrosis Services Limited and are consolidated on a line by line basis. Both entities draw up their financial statements to 31 March each year. The parent charity has claimed exemption from presenting its own statement of financial activities under section 408 of Companies Act 2006. The deficit of the parent charity was £2,629,000 (2024: deficit of £916,000).

Cystic Fibrosis Services Limited‘s results for the year ended 31 March 2025 are summarised in note 13. The net surplus for the year of £852,000 (2024: £899,000) will be donated in full to the parent charity after the year end.

Income

All income is recognised once the Trust has entitlement to income, it is probable that income will be received and the amount of income receivable can be measured reliably.

Donations and income from legacies are recognised where there is entitlement, probability of receipt and the amount of the gift is measurable. Donations in kind are non-monetary donations received by the Trust. Income, and the corresponding cost of the donation, is recognised when the service is provided. The value of the income and expenditure is the estimated fair market value of the service provided.

Income from charitable activities is recognised as earned as the related services are provided. Income from other trading activities is recognised as earned as the related goods are provided.

Interest on funds held on deposit is recognised in the statement of financial activities when receivable and the amount can be measured by the Trust. This is normally upon notification of the interest paid or payable by the bank.

Investment income is recognised on a receivable basis and the amounts can be measured reliably. Dividends are recognised once the dividend has been declared and notification has been received the dividends are due.

72

1. Accounting policies (continued)

Expenditure

Liabilities are recognised as expenditure as soon as there is legal or constructive obligation committing the Trust to that expenditure, it is probable that settlement will be required and the amount of obligation can be measured reliably.

Expenditure is recognised on an accruals basis as a liability is incurred and includes irrecoverable VAT where applicable. Expenditure is classified under the following activity headings:

• Expenditure on raising funds comprises those costs relating to activities where the primary aim is to raise funds, along with an apportionment of support costs.

• Expenditure on charitable activities comprises those costs relating to activities where the primary aim is congruent with the objects of the Trust, along with an apportionment of support costs. This includes grants made to research institutions and individuals, the provision of information and support services to people with cystic fibrosis and their families, peer reviews of cystic fibrosis centres and the development of the CF Registry.

Support costs, which include general management, payroll administration, budgeting and accounting, information technology, and human resources, are apportioned based on the direct costs in each activity category.

Grants payable are included in the statement of financial activities when approved and the intended recipient has either received the funds or has been notified of the award and has satisfied any initial conditions. Grants approved but not paid at the end of the financial year are accrued.

Foreign currency transactions

Transactions in foreign currencies are recorded in sterling at the rate ruling at the date of the transaction. Monetary assets and liabilities are retranslated at the rate of exchange ruling at the balance sheet date. All exchange differences are taken to the statement of financial activities.

Employee benefits

Employee benefits are accounted for as follows:

• Short term benefits including holiday pay are recognised as an expense in the period in which the service is received.

• Termination payments are accounted for on an accrual basis and in line with FRS 102.

• Pension contributions: the Trust operates a defined contribution plan for its employees. A defined contribution plan is a pension plan under which the Trust pays fixed contributions into a separate entity. Once the contributions have been paid the Trust has no further payment obligations. The contributions are recognised as an expense in the statement of financial activities when they fall due.

Taxation

No charge to taxation arises on the result for the year because the Trust can take advantage of the tax exemptions available to charities.

Leases

The Trust recognises expenses under “operating leases” relating to capital equipment which it does not own. The annual rentals are charged to the statement of financial activities on a straight line basis over the lease term. The primary lease accounted for in the financial year is rent of office space.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 73

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ended 31 March 2025

1. Accounting policies (continued)

Fund accounting

Endowment Funds are funds where the donor requires the Trust to hold the funds as capital investments. Income from the investment can be used by the Trust as specified in the terms of the endowment. The Trust is not entitled to spend the capital fund without permission form the donor.

Restricted funds are to be used for specific uses laid down by the donor. Expenditure which meets the donor’s criteria is charged against the specific fund.

Unrestricted funds are those which the Trust are free to use for any purpose in furtherance of the charitable objects. The Trustees may set aside some of the unrestricted reserves for specific purposes, for example to fund a future project. These funds are classified as designated funds.

Fixed assets and depreciation All assets costing £500 or more and with an expected useful life exceeding one year are capitalised.

Tangible assets are stated in the balance sheet at cost less accumulated depreciation. Depreciation is provided at rates designed to write off the cost of the cost of the assets, less any residual value, by equal annual instalments over their estimated useful lives at the following rates:

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----- Start of picture text -----
Furniture and fittings 33%
Computer hardware 33%
Computer software 33%
Website development 33%
Platform development 50%
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Website and platform development costs are capitalised on the basis that they lead to an asset that will generate funds for the Trust or where the primary aim is part of the objects of the Trust. The assets are depreciated once the asset is ready for use.

Investments

Investments are a form of basic financial instruments and are initially shown in the financial statements at fair value. Movements in the fair values of investments are shown as unrealised gains and losses in the statement of financial activities. Unrealised gains and losses are calculated as the difference between the fair value at the year end and their carrying value.

Gains and losses on the sale of investments are shown as realised gains and losses in the statement of financial activities. Realised gains and losses on investments are calculated between sales proceeds and their opening carrying values or their purchase value if acquired during the financial year.

74

1. Accounting policies (continued)

Financial Instruments

The Trust only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value:

• Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

• Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account.

• Creditors and provisions are recognised where the Trust has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

Critical accounting judgements and estimates

Preparation of the financial statements requires the Trust and management to make significant judgements and estimates. These judgements and estimates are continually evaluated and are based on historical experience and other factors, including expectations of future events.

The items in the financial statements where judgements and estimates have been made include:

• estimating entitlement to legacy income particularly in relation to complex estates

• estimating the useful economic life of tangible assets for the purposes of determining depreciation rates

• providing for bad debts

• allocation of support costs

• estimating future income and expenditure for assessing cash flows to assess whether the Trust is a going concern (see below).

• valuation of donations in kind received during the year.

The value of the contribution of the many thousands of hours donated by its unpaid volunteers as not been reflected in these financial statements. The SORP does not permit the accounting for such contributions due to the inherent uncertainty in applying an accurate and reliable financial measurement in accordance with the SORP.

Going concern

The Trustees have reviewed the financial statements and supplementary financial information, including the budget for the year to March 2026 and forecasts and projections for the following three year, and conclude that the Trust will continue to operate within or above its reserves policy throughout that period and that the Trust is a going concern.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 75

Cystic Fibrosis Trust Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Income from donations and legacies

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----- Start of picture text -----
Unrestricted Restricted Total Unrestricted Restricted Total
Funds 2025 Funds 2025 2025 Funds 2024 Funds 2024 2024
£’000 £’000 £’000 £’000 £’000 £’000
Branches, Groups and Community 2,249 18 2,267 2,224 45 2,269
Legacies 2,093 143 2,236 2,745 196 2,941
Individual donations 309 37 346 309 40 349
Corporate 104 14 118 267 5 272
Regular giving and appeals 1,155 1 1,156 1,204 2 1,206
Trusts 31 2,351 2,382 187 3,093 3,280
Appeal for Innovation Hub - - - - 306 306
Donations in kind 1,338 - 1,338 1,543 - 1,543
NHS National Services England 189 - 189 236 - 236
and Scotland
Total income from donations 7,468 2,564 10,032 8,715 3,687 12,402
and legacies
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Total income from donations and legacies includes gift aid of £463,000 (2024: £455,000).

Donations in kind refer to non-monetary donations received from partner organisations. They are recognised at the best estimate of their value as derived from the donor. In 2025 £1,338,000 (2024: £1,543,000) was recognised as income in respect of donated digital and cinema advertising space and professional fees. This was used to raise awareness of cystic fibrosis and the work of the Cystic Fibrosis Trust. The corresponding cost value of this donation is shown within Information, advice and support costs in note 4.

76

Cystic Fibrosis Trust Notes to the Financial Statements (continued) For the year ending 31 March 2025

3. Investment Income

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----- Start of picture text -----
Unrestricted Restricted Total Unrestricted Restricted Total
Funds 2025 Funds 2025 2025 Funds 2024 Funds 2024 2024
£’000 £’000 £’000 £’000 £’000 £’000
Income from listed investments 615 - 615 607 - 607
Bank interest 40 - 40 21 - 21
Total investment income 655 - 655 628 - 628
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4. Expenditure

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----- Start of picture text -----
Total costs – current year Grants Grants Direct Support Total Total
Restricted Unrestricted costs costs 2025 2024
£’000 £’000 £’000 £’000 £’000 £’000
Raising funds - - 2,293 552 2,845 2,748
Charitable activities
Research 1,413 1,111 1,655 933 5,112 6,409
Clinical care 286 75 784 276 1,421 1,477
Information, advice and support 118 283 3,186 867 4,454 4,460
Total charitable activities 1,817 1,469 5,625 2,076 10,987 12,346
Total resources expended 1,817 1,469 7,918 2,628 13,832 15,094
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Support costs are apportioned based on the direct costs in each activity category.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

77

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

4. Expenditure (continued)

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----- Start of picture text -----
Analysis of allocated
Support Costs – current year People and Office and Total Total
Governance Finance IT Support Organisational Facilities 2025 2024
£’000 £’000 £’000 Development £’000 £’000 £’000
£’000
Fundraising 122 78 162 66 124 552 438
Research 206 132 274 111 210 933 972
Clinical care 61 39 81 33 62 276 235
Information, advice 191 123 254 103 196 867 712
and support
Total costs 580 372 771 313 592 2,628 2,357
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----- Start of picture text -----
Grants Grants Direct Support Total
Total costs – prior year Restricted Unrestricted costs costs 2024
£’000 £’000 £’000 £’000 £’000
Raising funds - - 2,310 438 2,748
Charitable activities
Research 1,976 1,962 1,499 972 6,409
Clinical care 454 77 711 235 1,477
Information, advice 149 167 3,432 712 4,460
and support
Total charitable activities 2,579 2,206 5,642 1,919 12,346
Total resources expended 2,579 2,206 7,952 2,357 15,094
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78

Cystic Fibrosis Trust Notes to the Financial Statements (continued) For the year ending 31 March 2025

4. Expenditure (continued)

Analysis of allocated support costs – prior year

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----- Start of picture text -----
People and HQ & Total
Governance Finance IT Support Organisational Facilities 2024
£’000 £’000 £’000 Development £’000 £’000
£’000
Fundraising 108 42 128 59 101 438
Research 240 93 285 130 224 972
Clinical care 58 22 69 32 54 235
Information, advice 176 68 208 96 164 712
and support
Total costs 582 225 690 317 543 2,357
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Net income for the year is stated after charging

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----- Start of picture text -----
2025 2024
£’000 £’000
Auditors remuneration excluding VAT 28 29
Depreciation 67 64
Operating leases – building 282 269
Operating leases – other 3 3
Trustees’ travel expenses 5 1
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025

79

Cystic Fibrosis Trust Notes to the Financial Statements (continued) For the year ending 31 March 2025

5. Grants

Grants were awarded during the year as follows:

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----- Start of picture text -----
2025 2024
£’000 £’000
Grants to institutions 2,885 4,453
Grants to individuals 401 332
3,286 4,785
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Grants made to, and for, individuals affected by Cystic Fibrosis are for expenses such as respite care, building adaptations and equipment rental. These grants benefited a large number of individuals throughout the Trust’s network of regions and branches.

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Other grants (see notes below) 2025 2024
£’000 £’000
Clinical fellowship grants
Royal Brompton Hospital 78 -
Liverpool Heart and Chest Hospital - 78
Trial coordinator grants to CTAP centres 282 436
Registry support grants to CF Centres 324 326
Release of grants made in previous years (465) (257)
Total grants made to institutions 2,885 4,453
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During the year, grants were awarded to the following institutions:

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----- Start of picture text -----
Grants for medical research
2025 2024
Included in the above grants to institutions for medical research are grants
£’000 £’000
to fund the Translational Innovation Hub Network which was launched in
University of Cambridge 964 1,210 2024 in partnership with LifeArc. The total grant programme will be £15.0m
across five years. Grants made in the year to 31 March 2025 were:
Imperial College London / 320 1,116
Royal Brompton Hospital
2025 2024
University of Liverpool 311 182 £’000 £’000
University of Birmingham 300 - University of Manchester 222 -
Newcastle University 275 850 Imperial College London 302 -
University of Manchester 222 - University of Cambridge 96 -
Action Medical Research 100 105 University of Liverpool 307 -
Utrecht University, Netherlands 75 75 927 -
Medicines Discovery Catapult Limited 42 81
Other grants
University of Northumbria 55 - Trial coordinator payments: the Trust has committed to funding the salaries
Innovation Hub Cambridge - 100 of clinical trial coordinators as part of the Clinical Trials Accelerator Platform
(CTAP) programme.
Medical Research Council - 100
Other Institutions (less than £20k) 44 132 Registry support grants: the Trust provides grants to NHS Hospitals to
support the collection of clinical data used by the Trust’s Registry.
2,666 3,870
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Trial coordinator payments: the Trust has committed to funding the salaries of clinical trial coordinators as part of the Clinical Trials Accelerator Platform (CTAP) programme.

Release of grants made in previous years: Various grants totalling £465,000 (2024: £257,000) were released during the year. This was either due to the full grant value not being required by the grant recipient by the end of the project lifecycle, or an application for matched funding (upon which the Trust’s funding was dependent) not being successful.

80

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Staff costs

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2025 2024
£’000 £’000
Salaries 5,287 5,107
Social security costs 565 547
Other pension costs 328 318
6,299 5,995
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The average number of staf employed by the Trust:	2025 No.	2024 No.
Raising funds Research Clinical care Information, advice and support Support costs Total average monthly headcount	38 24 10 38 23 133	38 22 8 43 23 134

	£60,001 – £70,000 £70,001 – £80,000 £80,001 – £90,000 £130,001 – £140,000 The number of employees whose gross salary exceeded £60,000 in the year was:	2025 No. 7 3 1 1	2024 No. 4 3 1 1

Pension contributions to defined contribution pension schemes for employees noted above totalled £56,571 (2024: £44,083).

The total remuneration paid to key management personnel, including social security and employer pension contributions, was £669,676 which relates to 8 individuals who served on the Senior Leadership Team during the year (2024: £657,196 paid to 8 individuals).

No remuneration was paid to the trustees, and no payments were made to third parties on behalf of the trustees. £4,987 of expenses were settled on behalf of 6 Trustees during the period (2024: £1,201 was paid to 5 Trustees). Trustee indemnity insurance is in place for the protection of the Trustees.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

81

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Tangible and intangible assets

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----- Start of picture text -----
Group and charity Furniture Computer Computer Website Platform Total
and fittings hardware software development development £’000
£’000 £’000 £’000 £’000 £’000
Cost
At 1 April 2024 630 970 286 462 183 2,531
Additions - - - - - -
Disposals (630) (837) (242) (403) (183) (2,295)
At 31 March 2025 - 133 44 59 - 236
Depreciation
At 1 April 2024 630 904 254 428 183 2,399
Charge for the year - 33 15 20 - 68
Disposals (630) (837) (242) (403) (183) (2,295)
At 31 March 2025 - 100 27 45 - 172
Net book value
At 31 March 2025 - 33 17 14 - 64
At 31 March 2024 - 66 32 34 - 132
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At 31 March 2025 the Trust vacated its property at One Aldgate and moved to a new office. The disposals in the year represent fully depreciated assets that are no longer in use and were disposed of as part of the office closure.

82

Cystic Fibrosis Trust Notes to the Financial Statements (continued) For the year ending 31 March 2025

8. Investments

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----- Start of picture text -----
Total Total
Group and Charity 2025 2024
£’000 £’000
Opening market value 5,796 5,388
Additions at cost - 255
Disposals at opening book value - (230)
Net gains/(losses) on investments 40 362
5,836 5,775
Change in cash (1) 21
Closing market value 5,835 5,796
Total Total
Represented by: 2025 2024
£’000 £’000
Equities 512 587
Fixed Interest and multi-asset funds 5,030 4,909
Property 184 184
Cash 109 116
5,835 5,796
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Under the terms of the trust deed there are no restrictions on the trustees’ powers of investment.

The only asset that presents more than 5% of total investments in either financial year is the Responsible Multi-Asset Fund. The Trust’s holding at 31 March 2025 was £4,924,000 (2024: £4,809,000).

The historical cost of investments held within the Trust portfolio at 31 March 2025 was £4,853,000 (2024: £4,853,000) and accumulated unrealised gains at 31 March 2025 were £1,252,000 (2024: (£1,213,000).

9. Debtors

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----- Start of picture text -----
Group Group Charity Charity
2025 2024 2025 2024
£’000 £’000 £’000 £’000
Trade debtors 55 35 - -
Prepayments and accrued income 2,903 4,981 2,896 4,981
Other debtors 38 60 38 60
2,996 5,076 2,934 5,041
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025 83

Cystic Fibrosis Trust

Notes to the Financial Statements (continued)

For the year ending 31 March 2025

10. Grants Payable

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----- Start of picture text -----
2025 2024
Group and charity
£’000 £’000
Opening grant creditor 12,792 13,263
Grants awarded during the year 3,286 4,785
Grants paid during the year (5,487) (5,256)
Closing grant creditor 10,591 12,792
Represented by
Grants due within one year 5,274 6,065
Grants due after one year 5,317 6,727
10,591 12,792
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The Trust has considered the discounting of grant commitments due in more than one year but has not made any adjustments to the figures disclosed above as the impact of discounting is negligible.

11. Creditors

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----- Start of picture text -----
Group Group Charity Charity
2025 2024 2025 2024
£’000 £’000 £’000 £’000
Trade creditors 576 857 572 857
Other creditors 43 41 42 41
Other taxation and social security 135 147 135 147
Amounts owed to subsidiary undertaking - - 790 932
Accruals and deferred income 1,960 1,727 1,955 1,648
2,714 2,772 3,494 3,625
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84

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

12. Financial Instruments

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----- Start of picture text -----
Group Group Charity Charity
2025 2024 2025 2024
£’000 £’000 £’000 £’000
Financial assets measured at amortised cost 14,201 16,109 14,224 14,224
Financial assets measured at fair value 5,835 5,796 5,835 5,796
Financial liabilities measured at amortised cost (12,414) (15,063) (12,418) (15,142)
Net financial assets measured at amortised cost 7,622 6,842 7,641 4,878
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The Trust only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value.

Financial assets held at fair value include assets held as investments.

Financial liabilities measured at amortised cost include trade creditors, other creditors, accruals, grants payable, deferred income and amounts due to group undertakings.

13. Interest in subsidary undertaking

Cystic Fibrosis Services Limited is a company incorporated in England and Wales (company number 00900164) and is a wholly owned subsidiary of the Cystic Fibrosis Trust.

The subsidiary’s activities include studies and report services to the pharmaceutical industry and sale of charity Christmas cards and other merchandise.

Summary profit and loss account of Cystic Fibrosis Services Limited for the year ended 31 March 2025:

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----- Start of picture text -----
Total Total
2025 2024
£’000 £’000
Sales and sundry income 1,257 1,304
Cost of sales and administration (338) (339)
Intercompany recharges (67) (66)
Net contribution to parent charity 852 899
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025 85

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

13. Interest in subsidary undertaking (continued)

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----- Start of picture text -----
Summary balance sheet: Total Total
2025 2024
£’000 £’000
Current assets
Debtors 853 968
Cash at bank 8 10
861 978
Creditors: amounts falling due within one year (9) (79)
Net assets 852 899
Capital and reserves
- -
Called up share capital (£2)
Profit and loss account 852 899
Shareholder's funds 852 899
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The Trust owns the whole of the issued ordinary share capital of Cystic Fibrosis Services Ltd which comprises 100 ordinary shares of £1 each. Two shares have been allotted, which are called up and fully paid.

The subsidiary’s profit for the year will be donated in full to Cystic Fibrosis Trust after the year end.

14. Lease commitments

At 31 March, the Trust’s future minimum operating leases payments relating to buildings were:

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----- Start of picture text -----
Property Equipment
2025 2024 2025 2024
£’000 £’000 £’000 £’000
Within one year 205 271 2 2
Between two and five years 409 - 6 6
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Operating lease expenditure in the year is disclosed in note 4.

15. Contingent assets

As at 31 March 2025, the charity had been notified of a further 13 residual and pecuniary legacies which have not been recognised as income in the Statement of Financial Activities as they do not meet the criteria detailed in the accounting policies. These legacies have an estimated value of £275,000 which has not been accrued.

16. Related party transactions

The group has taken advantage of the exception which is conferred by FRS102 Section 33.1A Related Party Disclosures that allows it not to disclose transactions with group undertakings that are eliminated on consolidation.

Total donation income from the trustees in the period was £30,681 (2024: £16,701). In addition, six of the trustees (2024: seven trustees) were involved in fundraising activities carried out by regional fundraising branches.

Six trustees claimed expenses totalling £4,987 in the year (2024: four trustees totalling £1,201). These expenses related to travel and subsistence.

17. Post balance sheet events

There were no post balance sheet events or contingent liabilities when the accounts were signed and authorised for issue.

86

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

18. Analysis of net assets between funds

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----- Start of picture text -----
Unrestricted Endowment funds Other restricted 2025
£’000 £’000 £’000 £’000
Tangible fixed assets 64 - - 64
Investments 4,835 1,000 - 5,835
Current assets 16,682 - 456 17,138
Current liabilities (7,988) - - (7,988)
Liabilities due in more than (5,317) - - (5,317)
one year
Provisions due in more than (170) - - (170)
one year
8,106 1,000 456 9,562
----- End of picture text -----

Prior year funds

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----- Start of picture text -----
Unrestricted Endowment funds Other restricted 2024
£’000 £’000 £’000 £’000
Tangible fixed assets 132 - - 132
Investments 4,764 1,032 - 5,796
Current assets 20,678 - 468 21,146
Internal obligations (8,837) - - (8,837)
Current liabilities (6,727) - - (6,727)
Liabilities due in more than (170) - - (170)
one year
9,840 1,032 468 11,340
----- End of picture text -----

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 87

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Current year fund movements summary

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----- Start of picture text -----
Balance Balance
31 March Investment Income Expenditure Transfers 31 March
2024 Gains/(Losses) £’000 £’000 £’000 2025
£’000 £’000 £’000
The funds of the charity
Endowment funds (Note 20) 1,032 (30) - (2) - 1,000
Restricted funds (Note 21) 468 - 2,564 (2,541) (35) 456
Unrestricted funds
Designated reserves
Organisational reserve 1,000 - - (132) - 868
Fixed asset reserve 132 - - (68) - 64
Research funds - - - - 465 465
Total designated funds 1,132 - - (200) 465 1,397
Retained reserves 8,708 70 9,450 (11,089) (430) 6,709
Total unrestricted funds 9,840 70 9,450 (11,289) 35 8,106
Total charity funds 11,340 40 12,014 (13,832) - 9,562
----- End of picture text -----

Movements in funds for prior periods are presented in note 23.

The designated funds are explained on page 58.

Retained reserves are funds which can be used to fulfil any part of the Trust’s objectives. The Trustees have adopted a reserves policy designed to ensure the Trust maintains sufficient funds to continue its activities, particularly in light of recent economic volatility.

The Trustees have set a minimum level of retained reserves and an upper target with the aim that unrestricted funds fall within this range. Based on the 2025/26 budget and a review of the above risk factors, the target core reserves range is between £4.0m and £6.5m.

At 31 March 2025 the Trust’s retained reserves were £6.7m (2024: £8.7m) which is slightly above this core reserves range. The Trustees approved a detailed business plan with a deficit budget for the next financial year which maintains services and grant awards at a level similar to last year and which will bring the Trust’s retained reserves within this core range. (Retained reserves are forecast to be £5.3m at March 2026 and reduce further to £5.0m by March 2027.)

Transfers between funds

Transfers were made between retained reserves and various restricted funds to reflect commitments made in previous years that were originally funded from retained reserves but which have subsequently been backfilled by restricted donations.

88

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

20. Endowment funds

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Balance Balance
31 March Investment Income Expenditure Transfers 31 March
2024 gains/(losses) £’000 £’000 £’000 2025
£’000 £’000 £’000
Ena Bennie Endowment 523 (16) - (1) - 506
EW Joseph Endowment 173 (5) - - - 168
Joseph Levy Endowment 288 (9) - (1) - 278
Sally Wrigley Memorial Fund 20 - - - - 20
Other Endowment funds 28 - - - - 28
Total endowment funds 1,032 (30) - (2) - 1,000
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Movements in funds for prior periods are presented in note 23.

The Trust maintains a number of endowment funds, where the capital is invested and the income arising from those investments is available to fund expenditure in the year.

• The Ena Bennie Memorial Fund was established in 1985. Income arising is unrestricted.

• The EW Joseph Fund was established in 1990. Income arising is restricted to the promotion of increased care at home.

• The Joseph Levy Memorial Fund was established in 1999. Income arising is restricted to funding education.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025 89

Cystic Fibrosis Trust Notes to the Financial Statements (continued) For the year ending 31 March 2025

21. Restricted funds

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Balance Balance
31 March Investment Income Expenditure Transfers 31 March
2024 gains/(losses) £’000 £’000 £’000 2025
£’000 £’000 £’000
Restricted funds related to research
Gene Therapy Research - - 2 (2) - -
General medical research - - 174 (174) - -
Sport England – Helping the active stay active 32 - - (32) - -
University of Sheffield: Preventing gastrointestinal cancer - - 37 (37) - -
in cystic fibrosis
UCL Great Ormond Street Institute of children - - 5 (5) - -
The CFTR Folding and Function SRC - - 23 (23) - -
UK CF Infection Biorepository 106 - - (64) - 42
Project Breathe 42 - - (42) - -
Maternal, Infant, Reproductive and Child Health in CF - - 75 (53) - 22
Gut symptoms 66 - 10 (76) - -
Translational Innovation Hub Network 24 - 1,121 (986) - 159
Quality Improvement Project 35 - - - (35) -
Other research related restricted funds 4 - - - - 4
Total funds related to research 309 - 1,447 (1,494) (35) 227
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90

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Restricted funds (continued)

Balance 31 March 2024 £’000 Restricted funds related to Information and Support Joseph Levy/Education grants 3 Building Brighter Futures - Support services (inc. welfare grants) 57 Work Forwards (England) 39 Work Forwards (Scotland) 4 Helpline - Total funds related to Information and Support 103	Investment gains/(losses) £’000 - - - - - - -	Income £’000 140 35 77 83 - 5 340	Expenditure £’000 (66) (19) (98) (72) (4) (5) (264)	Transfers £’000 - - - - - - -	Balance 31 March 2025 £’000 77 16 36 50 - - 179	Restricted funds related to information and support are donations to fund activities supporting people with cystic fbrosis and their families. These include: •Joseph Levy Education grants– funding people with cystic fbrosis in their education and studies. •Building Brighter Futures– funding a youth programme supporting young people with cystic fbrosis. This fund is supported by National Lottery Community Fund. •Support Services– various activities for supporting people with cystic fbrosis and their families, including the welfare grants programme.
						•Work Forwards (England)– funding to
Other funds						support people with cystic fbrosis so that they can take advantage of opportunities,
Clinical Trials Accelerator Platform (CTAP) -	-	751	(751)	-	-	build new futures and strengthen their
CTAP Clinical Trials Conference 5	-	-	(3)	-	2	long-term fnancial resilience. This is supported by the National Lottery
Carols by Candlelight 5 Improving Transparency of Processes 10 Workforce survey (Vertex Circle of Care) - Vertex IME study - Other older funds 36	- - - - -	- - 14 12 -	(3) - (14) (12) -	- - - - -	- 10 - - 36	Community Fund.
Total other funds 56	-	777	(783)	-	50
Total restricted funds 468	-	2,564	(2,541)	(35)	456

Movements in funds for prior periods are presented in note 23.

Restricted funds related to research are donations relating to grant commitments made by the Trust to research institutions.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

91

Cystic Fibrosis Trust Notes to the Financial Statements (continued)

For the year ending 31 March 2025

1. Prior year consolidated statement of financial activities

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Unrestricted Restricted Endowment Total Funds
Note Funds Funds Funds 2024
£’000 £’000 £’000 £’000
Income and endowments from:
Donations and legacies 2 8,715 3,687 - 12,402
Charitable activities
Other trading activities 1,304 - - 1,304
Investments 3 628 - - 628
Other income 332 - - 332
Total income 10,979 3,687 - 14,666
Expenditure on:
Raising funds 4 2,742 6 - 2,748
Charitable activities
Research 4 4,401 2,008 - 6,409
Clinical care 4 655 822 - 1,477
Information, advice and support 4 4,082 378 - 4,460
Total charitable activities 9,138 3,208 - 12,346
Total resources expended 4 11,880 3,214 - 15,094
Net income/(expenditure) before (901) 473 - (428)
investment gains/(losses)
Realised investment gains/(losses) (2) - - (2)
Unrealised investment gains/(losses) 353 - 60 413
Net investment gains/(losses) 351 - 60 411
Net (expenditure)/income (55) 473 60 (17)
Transfers between funds 23 679 (679) - -
Net movement in funds 129 (206) 60 (17)
Reconciliation of funds:
Total funds brought forward 9,711 674 972 11,357
Total funds carried forward 23 9,840 468 1,032 11,340
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92

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Prior year movements in funds

==> picture [564 x 234] intentionally omitted <==

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Summary Balance Investment Balance
31 March 2023 gains/(losses) Income Expenditure Transfers 31 March 2024
£’000 £’000 £’000 £’000 £’000 £’000
The funds of the charity:
Endowment funds (see below) 972 60 - - - 1,032
Restricted funds (see below) 674 - 3,687 (3,214) (679) 468
Unrestricted funds:
Designated reserves
Organisational reserve 1,000 - - - - 1,000
Fixed asset reserve 155 - - - (23) 132
Appeal deficit (1,285) - - - 1,285 -
Total designated funds 1,155 - - - 23 1,132
Retained reserves 8,556 351 10,979 (11,880) 702 8,708
Total unrestricted funds 9,711 351 10,979 (11,880) 679 9,840
Total charity funds 11,357 411 14,666 (15,094) - 11,340
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The following transfers were made between funds in the year to 31 March 2024

• A transfer was made to the Fixed asset reserve to match the current balance on Fixed Assets

• Other transfers were made between Retained reserves and various restricted funds to reflect commitments made in previous years that were originally funded from retained reserves but which have subsequently been backfilled by restricted donations.

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Balance Investment Balance
Endowment funds 31 March 2023 gains/(losses) Income Expenditure Transfers 31 March 2024
£’000 £’000 £’000 £’000 £’000 £’000
Ena Bennie Endowment 491 32 - - - 523
EW Joseph Endowment 162 11 - - - 173
Joseph Levy Endowment 271 17 - - - 288
Sally Wrigley Memorial fund 20 - - - - 20
Other endowment funds 28 - - - - 28
Total endowment funds 972 60 - - - 1,032
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025

93

Cystic Fibrosis Trust

Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Prior year movements in funds (continued)

Restricted funds

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----- Start of picture text -----
Balance Investment Balance
31 March 2023 gains/(losses) Income Expenditure Transfers 31 March 2024
£’000 £’000 £’000 £’000 £’000 £’000
Restricted income funds
Appeal: Innovation Hub at Cambridge - - 306 - (306) -
Restricted funds related to research:
Genetic therapies - - 3 (3) - -
General medical research - - 260 (260) - -
Sport England – Helping the active stay active 32 - - - - 32
University of Sheffield: Preventing - - 34 (34) - -
Gastointestinal Cancer in CF
UCL/Great Ormond Street Institute of child - - 20 (20) - -
health: Therapeutic gene editing
SRC Costed Extensions - - 379 (379) - -
University of Sheffield: Pulmonary magnetic 366 - 7 - (373) -
resonance imaging for CF
UK CF Infection Biorepository - - 213 (107) - 106
Project Breathe - - 1,188 (1,146) - 42
Queen’s university Belfast: Developing a novel - - 15 (15) - -
gene therapy platform
Translational Innovation Hub Network 15 - 62 (38) - 64
Quality Improvement Project 35 - - - - 35
Gut Symptoms 39 - 27 - - 66
Other research related restricted funds 4 - - - - 4
Total funds related to research 476 - 2,514 (2,002) (679) 309
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94

Cystic Fibrosis Trust Notes to the Financial Statements (continued) For the year ending 31 March 2025

1. Prior year movements in funds (continued)

==> picture [564 x 300] intentionally omitted <==

----- Start of picture text -----
Balance Investment Balance
31 March 2023 gains/(losses) Income Expenditure Transfers 31 March 2024
£’000 £’000 £’000 £’000 £’000 £’000
Restricted funds related to Information
and Support
Joseph Levy/Education Grants 11 - 41 (49) - 3
Building Brighter Futures 16 - - (16) - -
Support services (inc. welfare grants) 93 - 212 (248) - 57
Work Forwards (England) 13 - 83 (57) - 39
Work Forwards (Scotland) 9 - - (5) - 4
Helpline - - 5 (5) - -
Helen Barrett Bright Ideas Awards - - 3 (3) - -
Total funds related to Information and Support 142 - 344 (383) - 103
Other funds
CTAP (Clinical Trials Accelerator Platform) - - 804 (804) - -
CTAP Clinical Trials Conference 14 - 7 (16) - 5
Carols by Candlelight 6 - 3 (4) - 5
Improving Transparency of Processes - - 15 (5) - 10
Other older funds 36 - - - - 36
Total other funds 56 - 829 (829) - 56
Total Restricted Reserves 674 - 3,687 (3,214) (679) 468
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025

95

Structure, governance and management

Royal Patron

• HRH King Charles III, KG, KT, GCB, OM

Honorary President

• Dr James Littlewood OBE MO FRCP FRCPE DCH

Trustees

• Richard Hunt CBE (Chair)

• Sean Collins

• Anne Byrne

• Richard Hoey

• Michelle Shore

• Joanna Barrett

• Sophie Pierce

• Sonya Trivedy

• Professor Martin Walsh

• Jane Wainwright

• Neil Priscott

• Dr Maya Desai

• (appointed 23 May 2024)

Engagement Committee

• Richard Hoey (Chair)

• Sean Collins

• Joanna Barrett

• Sophie Pierce

• Neil Priscott

Finance and Audit Committee

• Sean Collins (Chair)

• Anne Byrne

• David Sawer

(Independent member

• resigned 29 April 2025)

• Michelle Shore

• Ed Rushton

• (Independent member, Investment Sub-Committee)

• Nick Wood (Independent member, Investment Sub-Committee)

Senior Leadership Team

• David Ramsden – Chief Executive

• Dr Keith Brownlee – Director of Medical Affairs

• Dr Anne Shinkwin – Director of Fundraising (resigned October 2024)

• Vanessa Newton – Director

• of Fundraising (appointed October 2024)

• Clare Corbett – Director of External Affairs

• Dr Lucy Allen – Director of Research and Healthcare Data

• Alex Fowles - Director of Finance and Resources

• Dr Sarah Clarke - Associate Director, Data and Quality Improvement

Company Secretary

• Alex Fowles

People Committee

• Michelle Shore (Chair)

• Sonya Trivedy

• Joanna Barrett

• Dr Maya Desai

(appointed to the People Committee

• 16 September 2024)

96

Recruitment, induction and training of Trustees

Principal and Registered Office

33 Creechurch Lane London EC3A 5EB

020 3795 1555 [e-mail] cysticfibrosis.org.uk

Company limited by guarantee Company registration number: 3880213

Charity registration number: England & Wales — 1079049 Scotland — SC040196

Auditors

Buzzacott Audit LLP 130 Wood St London EC2V 6DL

Bankers

National Westminster Bank plc 15 Bishopsgate London EC2N 3NW

Investment Managers

Cazenove Capital Management 12 Moorgate London EC2R 6DA

Legal structure

Cystic Fibrosis Trust (‘the Trust’) is a registered charity in England and Wales (charity number 1079049) and in Scotland (charity number SC040196) and is also a company incorporated in 1999 and limited by guarantee (no 3880213). The overall objects and powers of the Trust are set out in the Memorandum and Articles of Association.

The Board of Trustees (‘the Board’) has full legal responsibility for corporate governance and all operations of the Trust, including determining its strategic direction.

For the purposes of the Companies Act 2006, members of the Board are directors of the company and the Board is comprised of 12 Trustees with a range of skills. Several committees such as the Finance and Audit Committee, People Committee, Engagement Committee, Research Grant Review Committee and Registry Steering Group support the SLT and the Board in reviewing progress throughout the year and making recommendations to the Board for consideration.

Trustees consider the relevant skill set required to enable effective oversight and proper governance of the Trust. New Trustees are appointed after a rigorous recruitment process, which includes national advertising and can include recommendations.

Upon appointment to the Board, to help facilitate their understanding of the current issues concerning the Trust, each new Trustee is provided with information tailored to reflect any specific areas of responsibility. The new Trustee will meet with the Chair, Chief Executive Officer and staff working within their own specialist area.

Senior Leadership Team

The Trustees have delegated day-to-day responsibility for running the Trust to the Chief Executive Officer, David Ramsden, and his Senior Leadership Team (SLT).

The Chief Executive Officer and the SLT report to the Board both formally at the Board meetings and informally (as appropriate) throughout the year, thereby ensuring a regular flow of information to aid decision making.

The remuneration of key management personnel is determined by a recognised job evaluation framework which takes into account the skills required and the complexity of individual roles. The remuneration of the Chief Executive Officer is approved by the Board. For all other staff the process, including the award of annual pay uplift, is approved by the People Committee.

Public benefit

The Trustees confirm that they have complied with the duty in section 17 of the Charities Act 2011 to have due regard to public benefit guidance published by the Charity Commission. In reviewing our aims, objectives and planning future activities, the Trustees have taken into account the Charity Commission’s general guidance on public benefit. The Trustees ensure that activities undertaken are always in line with the charitable objectives and aims of Cystic Fibrosis Trust.

Cystic Fibrosis Trust | Annual report and financial statements | March 2025

97

Open Strategic Research Centres (SRC) and Development Awards (DA) Awards – April 2025

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SRC/DA Lead applicant and Research goal Title Cystic Fibrosis Trust
Award host institution commitment
SRC012 Dr Daniel Peckham, Symptoms throughout The Impact of Gut Dysbiosis on Lung £750,001
St James’ Hospital the body Inflammation in cystic fibrosis
SRC014 Professor Jane Davies, Diagnosis and Personalised Approach to £750,000
Imperial College London treatment of Pseudomonas Aeruginosa (PAPA)
lung infections
SRC015 Dr Darius Armstrong-James, Diagnosis and TrIFIC: Targeting Immunotherapy for Fungal £750,000
Imperial College London treatment of Infections in cystic fibrosis
lung infections
SRC016 Professor Pietro Cicuta, Effective treatments Mucociliary clearance – from fundamentals £743,852
University of Cambridge for all to personalised treatment
SRC018 Professor Steven Renshaw, Living longer Preventing gastrointestinal cancer £749,214
University of Sheffield healthier lives in cystic fibrosis
SRC019 Professor James Shaw, Symptoms throughout Mechanisms and measures of the pathways £750,000
University of Newcastle the body through which cystic fibrosis exocrine
pancreatic disease leads to beta-cell
dysfunction and diabetes
SRC020 Professor Stephen Hart, Effective treatments Therapeutic gene editing of CFTR. £375,000 (Total
University College London for all Co-funded with CFF award; £749,924)
SRC021 Professor David Sheppard, Effective treatments The CFTR Folding and Function SRC £747,972
University of Bristol for all
SRC022 Professor Jo Fothergill, Diagnosis and An evidence-based preclinical framework for £374,689
University of Liverpool treatment of the development of antimicrobial therapeutics (Total award: £749,373)
lung infections in cystic fibrosis (PIPE-CF). Co-funded with CFF
SRC023 Professor Alan Smyth, Symptoms throughout Gut Research Advancing a Mechanistic and £749,592
University of Nottingham the body Personalised Understanding of Symptoms in
/ Queens University Belfast cystic fibrosis: A strategic research centre: The
GRAMPUS-CF SRC
SRC024 Dr Paola Vergani, Effective treatments Restoring the fizz: Pharmacological repair £374,987
University College London for all of bicarbonate transport in cystic fibrosis. (Total award: £749,973)
Co-funded with CFF
SRC025 Professor Jim Wild, Diagnosis and Pulmonary magnetic resonance imaging for £366,536
University of Sheffield treatment of lung cystic fibrosis. Co-funded with CFF (Total award: £733,072)
infections
SRC026 Dr Mike Gray, Effective treatments PTSuppress – Novel lead compounds £799,808
University of Newcastle for all as potential suppressor drugs for
CFTR PTC mutations
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• Grant issued extension due to COVID-19 related delays

98

Open Strategic Research Centres (SRC) and Development Awards (DA) Awards – April 2025

==> picture [565 x 206] intentionally omitted <==

----- Start of picture text -----
SRC/DA Lead applicant and Research priority Title Cystic Fibrosis Trust
Award host institution commitment
SRC027 Dr Imogen Felton and Living longer MATRIARCH_CF – MATeRnal, InfAnt, £799,089
Professor Jane Davies, healthier lives Reproductive and Child Health in CF
Royal Brompton Hospital
SRC028 Professor Andres Floto, Diagnosis and Developing better treatments for £800,002
University of Cambridge treatment of Mycobacterium abscessus
lung infections
DA001 Professor Nicholas Effective treatments ADVANCE-CFTR: Advanced Diagnostic £299,536
Simmonds, for all Validation and Novel Clinical Evaluation across
Royal Brompton Hospital the CFTR spectrum
DA002 Dr Freddy Frost, Living longer ITCH-CF: Investigating The Cardiovascular £173,487
University of Liverpool healthier lives Health of people living with cystic fibrosis
DA003 Dr Ildem Akerman Symptoms throughout Developing autologous stem cell-derived £300,000
University of Birmingham the body therapies for cystic fibrosis diabetes
DA004 Dr Mike Gray, Effective treatments Novel role for succinate chemosensing in the £275,265
Newcastle University for all pathogenesis of CF airway disease
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Open Venture Innovation Awards (VIAs) – April 2025

==> picture [663 x 230] intentionally omitted <==

----- Start of picture text -----
VIA Award Lead applicant and Research priority Title Cystic Fibrosis Trust Leveraged funding and
host institution commitment funding source
VIA036 Dr Fred Piehl, Imperial Diagnosis and PhD studentship 2 – Air pollution and £42,500 £42,500
College London treatment of environmental factors on infection – linking Imperial College
lung infections with Registry data London
VIA062 Prof Miguel Camara, Diagnosis and Scholarship for the National Biofilms £50,000 £50,000
University of Nottingham treatment of Innovation Centre (NBIC) University of
lung infections Nottingham
VIA098 Dr Jonathan Cox, Diagnosis and Discovery of new and repurposed £25,000 £25,000
Aston University treatment of ß-lactamase inhibitors for improving ANTRUK (Antibiotic
lung infections Mycobacterium abscessus treatment Resistance UK)
VIA105 Professor Alan Smyth, Living longer Core Outcome Set Taskforce for Cystic Fibrosis £93,089 £105,652
University of Nottingham healthier lives (COST-CF): a patient-initiated core outcome NIHR Biomedical
set for CF Research Centre
and Programme
Development Grant
VIA107 Dr Rian Griffiths, Diagnosis and Development of a rapid and highly sensitive £37,726 £886,437
University of Nottingham treatment of analytical method for the detection of BBSRC
lung infections biomarkers of infection in samples from
people with CF
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025

99

Open Venture Innovation Awards (VIAs) – April 2025

==> picture [664 x 415] intentionally omitted <==

----- Start of picture text -----
VIA Award Lead applicant and Research priority Title Cystic Fibrosis Trust Leveraged funding and
host institution commitment funding source
VIA115 Dr Freddy Frost, Diagnosis and Postal Sputum Testing for Early Detection of £17,215 £97,570
University of Liverpool treatment of Pseudomonas aeruginosa in CF: POSTED-CF Asthma & Lung UK
lung infections
VIA116 Professor Jane Davies, Diagnosis and Repurposing the multiple sclerosis drug, £99,999 £2,500,000
Imperial College London treatment of Glatiramer acetate, to potentiate the action LifeArc Collaborative
lung infections of conventional antibiotics for cystic fibrosis Discovery
airway infections Programme call
VIA117 Professor Janis Shute, Diagnosis and Investigating anti-pseudomonal effects of £50,000 £2,500,000
Ockham Biotech Ltd treatment of roneparstat, a non-anticoagulant derivative of LifeArc Collaborative
lung infections heparin with multiple anti-microbial, Discovery
anti-inflammatory and mucolytic activities Programme call
VIA118 Dr Paul McNally, Living longer ENHANCE – Establishing Natural History in an £96,424 £4,800,000
Our Lady's healthier lives Advanced New CF Care Era CFF
Children's Hospital
VIA119 Dr Mina King, Diagnosis and Understanding Regional Lung Physiology in £49,994 £1,800,000
University College London treatment of Cystic Fibrosis Using Advanced MRI MRC Career
lung infections Development Award
VIA121 Professor Ruth Keogh and Diagnosis and Target trial emulation in cystic fibrosis: £18,077 £150,000
Dr Emily Granger, London treatment of optimising methods for evaluating long term – pending peer review
School of Hygiene and lung infections antibiotic treatment using registry data NIHR Research for
Tropical Medicine Patient Benefit
VIA123 Professor Ineke Braakman, Effective Understanding hypo- and hyper-responding £75,000 £64,000
Utrecht University, treatments for all phenotypes of CFTR mutants for Nederlandse
Netherlands therapeutic use Cystic Fibrosis
Stichting (NCFS)
VIA124 Gerry McCauley, Effective Cell engineering optimisation and £21,242 £22,360
OmniSpirant Limited treatments for all electrophysiology assessment of OS001 OmniSpirant Limited
CFTR Extracellular Vesicles (EVs)
VIA126 Professor Laura Ashley, Living longer Cancer risk, screening, and surveillance £20,920 £56,609.17
Leeds Beckett University healthier lives for people with cystic fibrosis: a national Leeds Beckett
co-designed survey of awareness, perceptions, University
and behaviours, and information and
support needs
VIA127 Dr Malcolm Brodlie, Diagnosis and Tracking the mucosal immune response to £50,000 £160,000
Newcastle University treatment of viral respiratory tract infection in children Vertex Innovation
lung infections with cystic fibrosis Award
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100

Open Venture Innovation Awards (VIAs) – April 2025

==> picture [663 x 288] intentionally omitted <==

----- Start of picture text -----
VIA Award Lead applicant and Research priority Title Cystic Fibrosis Trust Leveraged funding and
host institution commitment funding source
VIA128 Professor Martin Welch, Diagnosis and Investigating the impact of pathoadaptive £64,500 £90,000
University of Cambridge treatment of mutations on the fitness of Pseudomonas BBSRC
lung infections aeruginosa in a polymicrobial airway
environment.
VIA129 Professor Chris van der Gast Symptoms throughout Impact of respiratory infection antibiotics upon £55,226.00 £55,226.00
the body the gut microbiomes of children with CF Northumbria
University
VIA130 Dr Ewart Kuijk Effective treatments AIR max: 3D AIRway organoids to define and £75,000 £150,000
for all MAXimize the efficacy of CFTR gene therapy Nederlandse Cystic
Fibrosis Stichting
(NCFS)
VIA131 CEO Lindsay Easton Living longer Optimising bowel cancer screening and £24,966.34 £49,932.68
– Bowel research UK healthier lives surveillance for people with cystic fibrosis: a Bowel Research UK
qualitative study to identify and understand
clinician and patient challenges and needs and
ways to address these
VIA132 Action Medical Research Effective treatments New therapeutic approaches for treating £99,999 £100,000
– Guy Moss for all cystic fibrosis Action Medical
Research
VIA133 Prof Camilla Godlee, Diagnosis and Characterising the host-pathogen £59,000 £134,000
University of Cambridge treatment of interactions required for intracellular BBSRC
lung infections Pseudomonas aeruginosa infection of
people with cystic fibrosis
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Cystic Fibrosis Trust | Annual report and financial statements | March 2025 101

==> picture [272 x 71] intentionally omitted <==

Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis. Our community will improve care, speak out, support each other and fund vital research as we race towards effective treatments for all.

We won’t stop until everyone can live without the limits of cystic fibrosis.

cysticfibrosis.org.uk

© Cystic Fibrosis Trust 2025. Registered as a charity in England and Wales (1079049) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number 3880213. Registered office: 33 Creechruch Lane, London EC3A 5EB.