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2025-12-31-accounts

Annual Report & Financial Statements FOR YEAR END 31ST DECEMBER 2025

WWW.ACTIONFORAT.ORG

Action For A-T Charity registered number 1145303

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Legal & Reference Information

Patrons

Jonny Wilkinson CBE Roger Black MBE Jeremy Guscott MBE Simon Shaw MBE Rachel Morris MBE Naga Munchetty Leon Haslam

Chief Executive

Dr Borja Sáez Professor David Coman

Patient Representatives

Amandeep Sharma Clare Gallagher Natasha Schneider Kelly Saponaro Casey Beveridge Henrik Bergrem

Sean Kelly

Trustees at the date of approval

Toby Read (Chairman) Emily Read William Rowberry (Treasurer) Tomos Shillingford Maria Leonard Chris Askew, OBE Dr Mark Toms Joseph Frost

Appointed during the year or since year end

None

College of Experts

Dr Kathryn Johnson, Chair, Scientific Advisor Professor David Attwell Professor Esther Becker Dr Lisa Bunn Professor Keith Caldecott Dr Richard Kay, Medical Statistician Dr Guy Makin Dr Andrew Prayle Bruno Salomone Gonzalez de Castejon Professor Grant Stewart Professor Matthew Wood Dr Alex Whitworth Professor Andy Bush Dr Anke Hensiek Professor Sam Behjati Munira Khan Dr Rebecca Gil Garzon Dr Shlomit Keler Dr Alex Krauthammer Professor Yossi Shiloh Dr Peter Olbrich Dr Peter Soler Palacin Felipe Cortés Dr David Gómez Andrés

Charity Registration Number

United Kingdom Registered Charity number: 1145303

Registered Office

Aruna House 2 Kings Road Haslemere Surrey GU27 2QA

Operational Address Action for A-T Carlton House 19 West Street Epsom Surrey KT18 7RL

Professional Advisers

Solicitors Bingham McCutchen LLP 41 Lothbury London EC2R 7HF

Bankers

HSBC Bank 110 High St Godalming Surrey GU7 1DP

Accountants & Auditors

A & N (Haslemere) Limited

t/a A & N Chartered Accountants and Registered Auditors, Aruna House 2 Kings Road Haslemere GU27 2QA

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Contents

Contents Contents
Legal & Reference Informati~~on~~
Table of Conten~~ts~~
Trustees’ Repo~~rt~~
•Reference & Administrative Detail~~s~~
•Public Benefit
•Objects, Achievements & Perfomance
•Strengthening our Capacity and Capabilitie~~s~~
•Continuing our Investment in Medical Research in the UK and Abro~~ad~~
•Ensuring that our research is of the highest quality and has clear and achievable
•Strengthening and Increasing our Fundraising Activiti~~es~~
•Working Closely with Others to Meet our Objectiv~~es~~
•Increasing Awareness of our Work and the Conditio~~n~~
Our Future Plans: Areas of Focus for 20~~26~~
Structure, Governance & Management
Financial Revie~~w~~
Independent Auditor’s Rep~~ort~~
Financial Statements
Acknowledgements		 ~~on~~ 2
3
4
4
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5
~~ad~~ 5
~~aims~~
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~~n~~		 20
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~~rt~~ 29
31
50

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Trustees’ Report

The Trustees of Action for A-T present their annual report and the financial statements for the year ended 31 December 2025.

The trustees have adopted the provisions of 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 2019).

Reference and Administrative Details

Action for A-T is a charity registered in England and Wales (No. 1145303). The Trustees listed on page 2 have overall responsibility for the strategic direction and effective governance of the Charity. The Trustees met in February, May, September, and November in 2025. The Charity is governed by the terms of its Trust Deed adopted on 6 January 2012 and as amended on 2 February 2012.

Public Benefit

Action for A-T’s charitable objectives are set out in its governing Trust Deed, summarised in the “About Us” section on our website and include undertaking rigorously evaluated and properly conducted medical research into finding a cure or new treatment for the rare genetic condition Ataxia Telangiectasia (A-T), a rare genetic condition.

During the year, the charity has continued to manage its ongoing research portfolio as well as committing funds to a variety of new A-T related research projects. Details of this work can be seen on pages 8 to 11.

Our Trustees have considered how our work may most effectively further our charitable objectives for benefit of the public, in particular all those affected by Ataxia Telangiectasia. In doing so, they have adhered to the Charity Commission’s guidance on public benefit (Public Benefit: Running a Charity (PB2) and Public Benefit: Reporting (PB3)), ensuring that all activities align with our mission and that no undue private benefit arises.

Environmental Considerations

While not subject to statutory reporting on greenhouse gas emissions, the charity remains mindful of its environmental impact. Measures taken include minimising paper use, promoting digital communications, and working with research partners committed to sustainable practices.

Objects, Achievements & Performance

Action for A-T’s mission is: “To speed up the process of identifying a cure for A-T or treatments that delay or prevent the disabling effects of this childhood condition”

To further that mission, the charity focused on the following key areas in 2025:

The Trustees confirm that all activities undertaken align with the charity's objectives and provide clear public benefit, in accordance with the Charity Commission's guidance.

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Strengthening our Capacity & Capabilities

Our Aim

As a small charity, we have limited resources and must therefore think very carefully before choosing to invest in new activities or personnel to help us achieve our charitable mission. Since the Charity was initially established in 2012, a great deal of governance and capacity building work has already taken place, but continued development is required to ensure that we are more efficient, productive and well positioned for the future.

Our Performance

2025 was another strong fundraising year with better-than-expected results from many of our activities. As in previous years, our ability to be flexible, innovative and capitalise on new opportunities enabled us to deliver a strong fundraising result.

Increased volunteer support helped us deliver the new planned activities and existing fundraising initiatives efficiently and effectively, allowing us to scale up many activities and increase funds raised. Many of these successful activities were data-led, as our previous investment in a good CRM system enabled us to reach key target audiences and manage relationships more effectively. In line with SORP 10.20, the value of general volunteered time has not been recognised in the financial statements, as it is not practicable to measure this contribution reliably.

We continued to explore and implement new technologies to improve our fundraising and communicate with our stakeholders. Throughout the year, we upgraded our CRM data base, invested in new IT equipment and strengthened our cyber security protocols to ensure that the data we hold is stored safely.

We proactively managed our research relationships especially relationships with our grant holders to ensure that they had the required resources to complete their projects as expediently as possible. Where appropriate, some studies were granted extensions with no further cost to the charity as many investigators experienced recruitment issues due to various micro and macro-economic factors or delays in recruiting study participants or fibroblasts.

Our ability to adapt was only possible due to our size and structure and the hard work of a small but highly skilled team which we retained in full during the year. They have once again gone above and beyond to deliver another successful fundraising year and the Trustees are very grateful for their incredible efforts.

Continuing our Investment in Medical Research in the UK & Abroad

Our Aim

Action for A-T aim to build a community of A-T research leaders and increase the amount of research that is taking place globally. Although we will always fund the highest quality applications wherever they are from; our key focus is to invest in projects and people based in the UK wherever possible.

Our Performance

In 2025, Action for A-T continued to fund and manage a focused portfolio of ongoing research projects aimed at improving diagnosis, treatment and long-term outcomes for people living with Ataxia-Telangiectasia. Our commitments span therapeutic development, drug discovery, clinical research and innovative technologies that support families today while driving progress toward future treatments. These studies include gene therapy, suppressor tRNA, and ATM-splicing modulation work that target the underlying cause of A-T as well as supporting high-throughput screening programmes designed to identify potential treatments that could move quickly toward clinical use. Our portfolio also addresses urgent medical needs, such as cancer risk, immune dysfunction, and biomarkers for early diagnosis in young children. Together, these projects reflect our commitment to accelerating scientific progress and bringing meaningful hope to families affected by A-T.

We provided sponsorship for the A-T Clinical Research Conference which took place at Loughborough University in June and arranged for the speakers’ presentations to be filmed and shared with the wider A-T community. The conference was the first in person meeting bringing together the global A-T research community since the pandemic and offered the perfect opportunity to catch up with many of our grant recipients as well as discussing new ideas and opportunities with other researchers.

Following a consultation with the Association of Medical Research Charities (AMRC), we expanded our Research Advisory Committee (RAC) to form a College of Experts. The COE is a distinguished group of clinicians, scientists, and sector specialists who provide independent, evidence-based guidance to ensure our research funding is rigorous, ethical, and focused on the greatest potential for patient impact. Their collective insight strengthens our decision-making, safeguards scientific quality, and helps us invest in research that truly moves the field forward. Experts from this group whose skillsets most closely match the applications we receive, will be selected for future grant rounds. This will ensure better understanding of each application, help in committee rotation and should reduce

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possible bias during the review process.

We opened a new drug repurposing grant round in March 2025 and members from the COE helped to review a new application from the Ataxia research team at UCL looking at Omaveloxolone as a potential treatment for Ataxia Telangiectasia. The application required some minor amendments and the team were advised to resubmit via the joint grant round with Action Medical Research which opened in December 2025.

In addition to the drug repurposing grant round, we also joined forces with Dr Andrew Prayle at Nottingham University for our third Sandpit event. A record amount of applications was received resulting in an investment of £58,188 in three new proof of concept studies. We also awarded a further £58,253 to Dr Sam Nayler at the QIMR Berghofer Medical Research Institute, Queensland, Australia to continue his work for a further 12 months exploring potential drug targets using mini brain organoids. This grant was made in partnership with BrAshA-T.

Social Responsibility & Community Engagement

Action for A-T is committed to supporting families affected by A-T, raising awareness, and fostering collaboration with researchers and medical professionals. Beyond funding research, we actively engage with the community to ensure our work has a broad and lasting impact.

  1. Community & Public Engagement: We work closely with families, researchers, and donors to advance A-T research and awareness.

  2. Volunteering & Fundraising: Our fundraising efforts are strengthened by dedicated volunteers and corporate partners, whose support is invaluable.

  3. Commitment to Inclusion & Governance: We ensure fairness, transparency, and ethical governance in all aspects of our work.

Funding High-Quality Research into A-T

In addition to supporting and funding research aimed at improving the understanding of A-T, there are many innovative and exciting medical research opportunities that raise the prospect of real progress in combating the effects of genetic conditions such as A-T.

Our Aim

Action for A-T’s aim is to be able to make grants to hospitals and universities throughout the world for the purpose of conducting research across all therapeutic areas related to A-T, with an emphasis on research that is likely to have a clear clinical application within the foreseeable future and/or which evaluate innovation in medical techniques which may have a potential benefit for children with A-T.

Our Performance

Since Action for A-T was established in 2012, we have invested £5,768,851 in 64 global research projects under seven main research headings categorised using the UK Clinical Research Collaboration Health Research Classification System.

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Total Research Spend Since 2012

The chart below shows the historic allocation of our research investment portfolio and our total investment in each of the six research categories listed above:

----- Start of picture text -----
£176,285
£613,684
£17,656
£2,097,004
£1,613,276
£645,247
£605,699
----- End of picture text -----

Underpinning Research

Aetiology

Prevention of Disease and Conditions

Detection, Screening & Diagnosis

Evaluation of Treatments and Therapeutic Interventions

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The following grants were awarded by the Trustees in 2025:

Dose response and mechanistic profiling of two candidate neuroactive drugs in A-T cerebellar organoids

Principal researchers: Dr Sam Nayler

Institute: QIMR Berghofer Medical Research Institute, Queensland, Australia Cost: £58,252.83 over 12 months in partnership with BrAshA-T (Australia) Start Date: 1st of February 2026

Project Overview

Having identified two features that operate differently in A-T cerebella, Dr Nayler and his team hypothesize these will be amenable to therapeutic intervention. The first is a drug which changes the way in which brain cells co-operate to balance out levels of glutamate. Glutamate is a building block but also acts an important neurotransmitter. ATM deficient cells have metabolic abnormalities, and thus this can spill over into issues affecting their balance of this neurotransmitter, driving further problems.

This process is critical to the cerebellum, and the team believe important for understanding A-T. The team have identified a drug (Riluzole) which has potential to correct this process and are also looking at a second aspect of Purkinje cell regulation, and whether targeting particular potassium channels which help regulate activity has therapeutic value. Depending on the efficacy of specific sup-tRNAs to bypass specific NSMs in the ATM and their ability to administer them efficiently to organs that are particularly susceptible to loss of ATM e.g. the cerebellum of the brain, it is possible that this therapy could potentially slow or halt progression of the neurological decline.

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Improving future treatments for Ataxia-Telangiectasia through better delivery of RNA-based therapies

Principal researchers: Dr James Dixon Institute: University of Nottingham, UK Cost: £18,938 over 9 months Start Date: 1st of March 2026

Project Overview

Dr Dixon and his team will carry out early-stage research to improve how emerging RNA-based treatments can be delivered to cells affected by A-T. It brings together an international team of experts from the UK, Germany and the USA, including researchers who are new to A-T and bring fresh expertise to the field.

The work focuses on improving antisense oligonucleotides (ASOs) small pieces of genetic material already being tested in patients by packaging them with a safe delivery system developed at the University of Nottingham. This approach aims to make these treatments work better and more consistently.

Over nine months, the team will:

By the end of the project, the team expect to have clear evidence that better delivery can improve the effectiveness of emerging A-T treatments and new research tools that can be shared with the global A-T research community. The findings will also provide a strong foundation for future studies, including work that could lead to clinical trials.

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Developing a Safer Immune-Based Treatment for Blood Cancers in Children and Adults with A-T

Principal researchers: Dr Saikit Mandal Institute: University of Nottingham, UK Cost: £19,905 over 12 months Start Date: 16th March 2026

Project Overview

This project explores a promising alternative: using a special type of immune cell, called γδ T-cells, which remain relatively intact in people with A-T. These cells naturally recognise and kill cancer cells without relying on the faulty ATM gene that causes A-T. This makes them a potentially safer option than standard chemotherapy.

The Nottingham based team will grow 3D “mini-tumours” (organoids) from cancer cell lines that carry the same ATM mutations seen in A-T patients. They will also expand γδ T-cells from healthy donor blood and test how effectively they kill leukaemia and lymphoma cells. The team will then assess whether combining γδ T-cells with existing immunotherapies (such as anti-PD-1 drugs) boosts their cancer-killing ability and use advanced imaging and machine-learning tools to measure how these immune cells interact with cancer cells in real time.

This will create the first pre-clinical platform specifically designed to test safer cancer treatments for A-T.

This study could be hugely beneficial to the families living with A-T as it provides a realistic pathway toward safer, less toxic cancer treatments and uses immune cells that are naturally preserved in A-T patients. It also reduces the reliance on chemotherapy, which is often life-threatening for this group and builds tools (organoids and analysis software) that can be shared with the wider A-T research community, accelerating future discoveries.

The results will provide essential preliminary data for larger applications to other funders. These future grants will support studies using patient-derived cells and move this work toward early-phase clinical trials.

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A prospective pilot study to compare lung CT and MRI in Ataxia Telangiectasia

Principal researchers: Dr Christabella Ng

Institute: University of Nottingham, UK

Cost: £19,895 over 12 months

Start Date: 1st of June 2026

Project Overview

Dr Ng and her team aim to test whether MRI scans, which use no radiation, can replace CT scans for monitoring lung disease in A-T. The team has already developed a new type of lung MRI that works while the person breathes normally, avoiding the need for breath-holding (which is difficult for many people with A-T).

This project will compare MRI and CT scans taken on the same day in 12 adolescents with A-T. They will assess whether MRI can show lung structure and function as clearly as CT, and whether it can provide better information than standard lung function tests, which are often unreliable due to muscle discoordination.

If MRI can replace CT, people with A-T could avoid repeated radiation exposure throughout their lives. This would reduce cancer risk and provide a safer, more comfortable way to monitor lung health.

12 young people with A-T who are already scheduled for a CT scan will be recruited to take part in the study and each participant will undergo a 45-minute, free-breathing lung MRI at the University of Nottingham.

The MRI scans will be compared with CT images to see how well MRI detects lung changes. The team will explore whether MRI can measure lung function more accurately than current tests and use the findings to design a multi-centre study.

The project will also generate essential pilot data needed to secure larger national grants and to introduce MRI-based measures into future drug trials for A-T.

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Ensuring that our research is of the highest quality, is well managed and has clear and achievable aims

Research is at the heart of what we do, and our research strategy outlines our intentions on achieving our mission.

Our Performance

Action for A-T were awarded their second prestigious AMRC award for best practise in medical and health research peer review in May 2021 and currently awaiting the outcome of a new audit which took place in 2025. The award confirms the robust methods used to make decisions about which research projects to fund and our support of the best researchers and the highest quality research, with the best chance of improving the lives of those affected by A-T. The award was made following a full audit of our processes which takes place every five years.

The Trustees generally stage one grant round per year where funds will allow. Applications are peer reviewed by independent external reviewers before they are passed on to our College of Experts for further review. Projects which pass the peer review process and are deemed high enough quality are passed on to the Trustees to make the final decision based on several key criteria including available funds, strategic alignment, and existing research commitments.

Our College of Experts (COE) are part of this process and consist of independent scientific experts from fields related to A-T, including clinicians, non-clinicians, and statistical expertise from a wide range of UK institutions. Lay members are also on the committee to incorporate the views of parents and patients living with A-T, bringing a valuable and unique perspective over what research should be funded. Members of our COE reviewed one of the applications we received in 2025 and their funding recommendations were passed on to the Trustees for consideration. The Trustees agreed with the COE’s suggestion not to fund the “Omaveloxolone Efficacy” study and the applicants were encouraged to reapply when the next grant round is launched.

Project outcomes and sharing knowledge

We believe that sharing project outcomes and knowledge is a fundamental requirement for the development of new research strategies which will ultimately benefit those living with the condition. Progress, annual and final reports are mandatory for all our research grants to ensure that they are reaching the agreed milestones. These reports are formally reviewed by our scientific advisor to ensure that each project is in line with its stated aims and the outcomes are then converted into lay summaries to share with our supporters.

Researchers are also encouraged to publish their findings in medical journals and where possible, make the findings freely available. The outputs of research such as publications usually occur sometime after a research project ends and it can take many years to translate research ideas into new treatments or therapies to improve quality of life.

The outcomes of all the concluded research we have funded are displayed on our website under the ‘Completed Research’ section. Where applicable, these posts also include links to any online publications, and we also share project information via our social media channels and in various communications to our supporters and potential donors.

Evaluating the outcomes of our research

As with all charities, we are passionate about demonstrating the impact of our work and understand the importance of monitoring the progress and outcomes of our research. Throughout the year we continued to work with our scientific advisor and other members of our College of Experts to oversee and evaluate the effectiveness of our ongoing research portfolio. Between them, they monitored the progress of ongoing projects and signed off on any which were completed to help ensure that the original research aims stated in the application were fulfilled.

At the start of 2025 we created an impact report which highlighted some of our successes and stories over the past 12 years. The impact report was shared widely with our key stakeholders and is available to view or download from our website https://actionforat.org/12-years-of-research/

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The following studies concluded in 2025, and the initial project outcomes were as follows:

Exploring Omaveloxone efficacy in Ataxia-Telangiectasia

Principal researcher: Professor Paola Giunti (pictured) and Dr Rosella Abeti Institute: University College London (UCL), UK

Completion Date: January 2025

Project Overview

One of the processes happening in people who have A-T is increased oxidative stress. Oxidative stress is an imbalance of free radicals and antioxidants in your body that leads to cell damage. The team at UCL proposed to study a drug called Omaveloxolone (Omav). This drug is known to defeat oxidative stress in patients with Fredreich’s Ataxia, and the team wanted to investigate whether it could help overcome the adverse effects of oxidative stress in A-T cells.

Project Outcome

The study achieved it’s 3 milestones over the 4-month period:

1. Growing cells from AT and non-AT individuals

Skin cells (fibroblasts) were collected from both A-T patients and healthy individuals. These cells were then carefully grown and multiplied in the lab, creating a cell model to use in the next two stages of the research.

2. Testing the effect of Omav on cellular stress

Cells from A-T patients were found to produce higher-than-normal levels of harmful molecules called reactive oxygen species (ROS), which can damage cells. This suggests that A-T cells struggle to control oxidative stress. When treated with Omav, ROS levels in A-T cells dropped significantly, reaching levels similar to those found in healthy cells. This result shows that Omav is effective in reducing oxidative stress in the A-T fibroblasts.

3. Understanding Omav effect on the Nrf2 pathway

Western blot analysis, a technique used to measure protein levels, showed that A-T patient cells have lower-thannormal levels of Nrf2, a protein that helps cells fight oxidative stress. This deficiency may contribute to the increased oxidative damage observed in A-T.

When the cells were treated with Omav, Nrf2 levels increased and ROS, a potent toxin present in A-T cells, was reduced. This shows that the drug can activate the Nrf2 pathway, which plays a key role in antioxidant defence.

These initial findings show that A-T patient cells are highly vulnerable to oxidative stress due to defective Nrf2 signalling. However, treatment with Omav restores their antioxidant capacity, making it a potential therapeutic strategy for reducing oxidative damage in A-T. The team hope this could modulate disease progression. More in depth studies are now needed to bring this drug to clinical trials in humans.

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Further development of CRISPR/Cas Genome Editing as a Treatment for Ataxia Telangiectasia

Principal researcher: Professor Rafael Yáñez-Muñoz Institute: Royal Holloway, University of London Completion Date: March 2025

Project Overview

This project was an extension to a previous project. This extension funded the use of donated human blood stem cells to test methods to repair specific mutations in the gene responsible for ataxia-telangiectasia (A-T

Project Outcome

CRISPR genome editing technology is a very effective method to introduce defined changes in the cellular genome, and hence may allow the repair of mutations causing A-T. There are hundreds of different A-T mutations, and the team worked with two specific mutations, one of which is relevant to 10-15% of UK A-T patients. In the previous project they demonstrated that they could repair these two mutations in patient cells modified to live indefinitely in the laboratory. Following these successful experiments on laboratory cells, they started using blood stem cells from donors not affected by A-T. Blood stem cells can be returned to people following genetic modification, allowing the correction of diseases affecting production of blood cells and the immune system. They used donor cells because they are much easier to obtain than stem cells from people affected by A-T, which would be the next step if the procedure was successful.

Their results indicate that they can introduce the desired genome changes in the donor stem cells. This suggests that the methods used may allow correction of the two A-T gene mutations if applied to blood stem cells from people with A-T. The team carried out analyses to check for possible negative effects of the CRISPR editing process on the genome of the treated cells. The results in this respect were also encouraging.

The team are currently sourcing blood stem cells from A-T patients with the two relevant mutations to further test their genome editing methods.

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IMAGIN-AT – advanced lung imaging and function testing in Ataxia Telangiectasia

Principal researcher: Dr Jayesh Bhatt and Dr Andrew Prayle Institute: Nottingham University Hospitals NHS Trust Completion date: May 2025

Project Overview

In A-T, breathing problems are one of the main causes of early death. To improve outcomes, researchers urgently need better ways to measure lung health. Standard breathing tests often don’t work well in AT because they require strong, coordinated breaths. Xrays and CT scans can show lung damage, but they use radiation — something that must be avoided as much as possible because people with AT already have a higher risk of cancer.

The IMAGINAT project set out to solve a longstanding challenge: how can we safely and reliably assess lung structure and function in AT, both in clinic and in future treatment trials?

Project Outcome

The research team developed and refined a new approach using Magnetic Resonance Imaging (MRI) — a radiationfree technique — alongside an adapted version of the Lung Clearance Index (LCI) test. The work took place in three phases:

Phase I – Feasibility - Initial MRI scans in children with AT showed that the method was possible but also revealed technical issues such as motion artefacts and image distortions.

Phase II – Troubleshooting - The team paused recruitment to diagnose the problems. They tested new oxygen delivery methods, adjusted scanner settings, replaced equipment that caused artefacts, and trialled scanning children in different positions. Scans improved, but some issues remained.

Phase III – A New Imaging Pipeline - During the COVID19 pandemic, scanning had to stop, but the team used this time to collaborate with imaging experts and design a completely new protocol on a modern 3Tesla MRI scanner. This final pipeline combined three complementary MRI techniques to capture both lung structure and how air moves in and out of the lungs — all without requiring breathholding.

The team also adapted LCI testing using a soft face mask, making it suitable for children who cannot reliably use a mouthpiece.

Across all phases, 21 participants took part.

Key Outcomes

The research team are now working to bring these new tests into routine clinical practice. The portable LCI equipment can already be used in clinic, and the team is exploring how best to integrate MRI lung scans into regular AT care. The data collected through IMAGINAT will also help design and power future clinical trials, ensuring that new treatments can be tested using reliable, meaningful lung health measures.

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Study of natural killer cells in A-T pathogenesis and their therapeutic implications

Principal researchers: Dr Margherita Doria and Dr. Maria Giovanna Desimio Institute: Bambino Gesù Children’s Hospital, Italy

Completed: 31st December 2025

Project Overview

This project set out to understand how natural killer (NK) cells – a key part of the immune system’s defence against viruses and cancer – function in people with AtaxiaTelangiectasia (AT). Earlier work suggested that NK cells in AT may be impaired because of changes in a receptor called NKG2D, which helps NK cells recognise and destroy abnormal cells. As the report notes, “NK cells displayed reduced expression of the activating NKG2D receptor linked to plasma accumulation of cognate ligands.” By studying both AT patients and an ATMdeficient mouse model, the team aimed to identify biomarkers of disease progression and explore potential therapeutic strategies that could strengthen immune responses in AT.

Project Outcome

The study found that although NK-cell numbers were preserved and their function was significantly impaired. A-T NK cells showed reduced expression of the activating receptor NKG2D, increased expression of the inhibitory receptor PD-1, and a marked reduction in both tumour-killing capacity and cytokine production. Plasma from A-T patients contained high levels of inflammatory and immunosuppressive molecules, including IL-6 and TGF-β, with strong correlations between these factors and NK-cell dysfunction. The team also established that NK cells of A-T patients displayed impaired effector functions and that TGF-β accumulation in A-T plasma was observed for the first time. These findings suggest that chronic inflammation and soluble NKG2D ligands contribute to NK-cell exhaustion.

Importantly, the team also explored potential therapeutic strategies. When patient cells were exposed to IL-15, NK-cell receptor expression improved and cytotoxic function was partially restored, even in the presence of TGF-β. This indicates that NK-cell-based immunotherapies—already advancing in cancer treatment—may be adaptable for A-T. Overall, the study provides a detailed map of NK-cell abnormalities in A-T and identifies several promising biomarkers and intervention points that could support future clinical advances.

The team plan to focus on making the most of the rich dataset they have collected and will begin to translate their findings into future treatment possibilities. They are now applying advanced statistical methods to explore how the immune changes they observed—such as high levels of IL-6, TGF-β and soluble NKG2D ligands—relate to real-world outcomes like recurrent infections, cancer risk and immune deficiency. This deeper analysis aims to identify reliable biomarkers that could help clinicians track disease progression or tailor care more effectively.

To view all our current and complete research projects, please visit: https://actionforat.org/category/research-projects-funded/

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Achievements and Performance, Fundraising Activities

Action for A-T raises funds through donations, fundraising events, and corporate partnerships. No professional fundraisers or commercial participators were engaged. All fundraising is conducted in-house and monitored by the Trustees.

The charity follows ethical fundraising standards and ensures that all activities comply with best practices. During the year, no complaints were received regarding fundraising.

Strengthening and Increasing our Fundraising Activities

Our Aim

Action for A-T funds high quality peer reviewed medical research to speed up the process of identifying a cure for Ataxia Telangiectasia (A-T). We endeavour to raise funds from a variety of activities which appeal to new and existing supporters. Since 2012 we have invested £5,768,851 in 64 A-T related research projects around the world, and this has only been possible thanks to our generous supporters.

Our Performance

2025 was another strong fundraising year with most activities performing better than expected due to the generosity of our event guests and sponsors. We were able to benefit from several new fundraising events including a ball staged in Headley, Hampshire run by one of our trustees and their friends, a large scale gala event staged by an International College in Spain, a 3-day endurance cycle ride staged by friends and employees of Brightwake staged a series of events staged by the employees of Aviva Investors. The previous sizeable funding from MRC to help retain early years researchers, and NATA was not repeated and this was the main reason for the reduction of income from 2024 to 2025.

Our investment in TCS London Marathon places proved successful once again, allowing us to make a 400% return. 19 people joined our marathon team raising £66,038. Our application to secure more marathon places through the official charity ballot was successful and we now have 27 places for the 2026 event.

In line with our fundraising strategy, we delivered a robust portfolio of sporting and social events as well as developing new relationships with other funders. We also diversified our other fundraising activities to ensure that we were not solely dependent on any one source of funding. Challenge and Social events increased to 53% of our overall income (2024 - 41%). Whilst other fundraising initiatives, such as donations, funding partnerships and trust and foundation applications accounted for 39% (2024 - 51%). The remaining 8% (2024 – 8%) came from bank interest on our designated funds.

A few notable fundraising activities took place throughout the year including various golf events and the Stewart Golf and Mashie online auctions. We are especially grateful to the staff and clients of The Constellation Automotive Group yet again for taking part in a one-day endurance cycle in Oxford which raised £63,800 plus the non-riders who raised an additional £42,900 from a marathon walk. We are also indebted to the staff at Aviva Investors for their generous support throughout the year and the students of Quest Professional who raised over £17,363 at their fundraising dinner. In addition, we would like to thank Clarion Golf for raising £21,660 and Simon Toon and his friends for their ongoing and valued support.

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Raising Funds Responsibly

Action for A-T are registered with the Fundraising Regulator and are committed to upholding the code of fundraising practice. We receive all our funding from voluntary sources, including individuals, companies, trusts and foundations and we do not work with any professional fundraisers or commercial participators to raise funds on our behalf. Each year, we purchase places in several physical challenges as well as staging and benefiting from a series of other social and sporting events.

We want everyone we interact with to feel free from undue influence when they consider donating. Our in-house fundraising team are trained to recognise these signs, so they can manage conversations in a way that could be considered intrusive or putting repeated or undue pressure on someone to donate.

We routinely monitor our fundraising materials to ensure our standards remain high and treat our supporters fairly. Supporter feedback is reviewed regularly to ensure our fundraising offer is appropriate and complies with relevant rules and regulations.

To help protect people in vulnerable circumstances, we continued to follow guidance from the Government and the Fundraising Regulator throughout 2025. We also continued to speak to more supporters to make sure our high standards were maintained.

The pie chart below shows the percentage splits of each of our areas of fundraising in 2025.

----- Start of picture text -----
Donations
Gift Aid Claims
Relationship Fundraising
Fundraising Events
Challenge Events
Bank Interest
----- End of picture text -----

We would also like to record our thanks to all our volunteer committee members for their time and commitment in helping us achieve our mission, as well as everyone who donated their time, auction prizes and/or supported or participated in our events.

In addition to the above, we are also extremely grateful to the trusts and foundations who provided restricted funding for various research projects (these are listed on page 50). We are always keen to work with other trusts, foundations and corporate funders who might be interested in supporting our work.

Events Since the End of The Year

Information relating to events since the end of the year is provided in the notes to the financial statements.

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Working Closely with Others to Meet our Objectives

Our Aim

Action for A-T strongly believes that there are many opportunities to further the search for a treatment or a cure for A-T through working with others that may have overlapping aims or objectives to our own. To this aim, we actively seek out like minded organisations and where possible, create collaborative partnerships.

Our Performance

Co-funding A-T Research Projects with other charities and patient organisations

Action for A-T continued to work closely with various organisations, charities, and patient organisations throughout 2025 to fund new and existing research studies. Throughout the year, we continued to manage a variety of our ongoing studies (funded in partnership with others) as well as contributing to new research. Our research partners in 2025 were as follows:

The UK based Children’s Charity GOSH

Action for A-T continued to work closely with GOSH charity and partnered with them on their 2025/26 National Research Project Grant Call. We have agreed to contribute 25% of the cost towards any successful A-T related applications.

The Australian charity BrAshA-T Ataxia Telangiectasia

Action for A-T have an ongoing collaborative funding partnership with BrAshA-T who are based in Queensland, Australia. Following a joint grant call in 2023 six new research studies were passed for funding and BrAshA-T agreed to contribute £200,000 towards the total cost of five of these projects. The first payment of £100,000 was made in December 2024 and the final payment of £100,000 was made at the end of 2025.

BrAshA-T have also set aside a minimum of £130,000 to be committed towards any new research studies which are deemed fundable at the conclusion of the current Action for A-T and Action Medical Research grant round. These funds will be paid to Action for A-T in the final quarter of 2026.

The UK based A-T Society

A strategic partnership was established between the A-T Society and Action for A-T in 2022 to increase the overall investment in new A-T research. Following the Action for A-T grant call in 2023 six new research studies were passed for funding and the A-T Society agreed to contribute £60,000 towards the total cost of three of these projects. The full payment of £60,000 was made in the second quarter of 2025.

The Spanish based AEFAT

A strategic partnership was established between the AEFAT and Action for A-T in 2022 to increase the overall investment in new A-T research. Following the Action for A-T grant call in 2023 six new research studies were passed for funding and AEFAT agreed to contribute €40,000 towards the total cost of five of these projects. The first payment of €20,000 was made in December 2024 and the final payment was made in December 2025.

The UK based Action Medical Research

Action for A-T partnered with the children’s health charity Action Medical Research (AMR) to co-fund up to £1,000,000 of A-T research in 2026. AMR will manage the application process and contribute 10% towards the costs of any successful UK based research studies. The grant round opened in December 2025 and is expected to conclude in August 2026.

Action for A-T will continue to explore additional joint funding opportunities with likeminded organisations throughout the coming year to maintain momentum and maximise the investment into A-T research.

Working strategically with the worldwide A-T community

The Global A-T Alliance is made up of charities and patient groups from the UK, USA, Spain, Israel, Japan, France, Turkey, Italy, China and Australia with the key objective of maximising the effort, resources and/or funding committed to finding a cure or treatments for Ataxia-Telangiectasia (A-T). The group meet virtually throughout the year to update each other on key research needs and findings as well as exploring ways in which they can work more closely together. To date, the Alliance members have jointly funded new research, met with a number of pharma companies to explore new treatment opportunities, delivered research focussed webinars for A-T families, assisted in the running of an in person clinical research conference and established a new website www.cureAT.org which brings together useful information about A-T. The Alliance members passionately believe that with increased funding and a continued global

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and collaborative effort, effective treatments for A-T will be developed sooner and the lives of those affected will be changed for the better.

Increasing Awareness of our Work and the Condition

Our Aim

As an ultra-rare disease, most people are unaware of A-T or the devastating effects of the condition. Action for A-T believes that raising awareness of the studies they fund and the impact of A-T on children and their families is an important part of increasing the potential funds available to further improve the understanding of the condition, and to progress research into possible treatments or a cure.

Our Performance

Action for A-T has significantly increased the public awareness of the condition over the past 12 months and will continue to explore all options to promote wider understanding of A-T and why research to find a cure or treatment is so important.

The Charity’s main achievements in this area to date include:

Celebrity Support

Our celebrity patrons have continued to help promote Action for A-T and the need for more research into the condition by championing campaigns and taking part in various activities throughout the year. As well as providing prizes for our auctions, Jonny Wilkinson created several short films which were shown at some of our events and attended the BGC trading day alongside Simon Shaw. Naga Munchetty hosted her annual golf day at Moor Park as well as the captains’ charity day at Banstead Downs Golf Club and recorded a number of promotional event videos. Several other celebrities including Chris Sheasby, Leon Haslam, Kevin Whately, and Jeremy Guscott helped generate funds, awareness, and support by taking part in events and campaigns.

Visibility at Research Institutions, Conferences and Medical Meetings

All Action for A-T funded researchers are provided with promotional materials to display at their research facility and required to acknowledge our financial support by including our logo on any posters or presentations. Throughout 2025, several conferences and scientific meetings took place where our researchers were able to present their findings. These presentations showcased our latest projects and provided the wider A-T community with a comprehensive view of the progress made to date. We were also credited for our support in various journals and academic publications by researchers who were able to publish their findings.

Digital Communications

The Charity website www.ActionforAT.org remains the focal point for event sign-ups, electronic donations, and research news. The site was updated and enhanced throughout the year to provide the best possible experience for our stakeholders. After 10 years, the WordPress platform which the website currently uses is nearing its end of life so will need to be addressed in 2026.

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We also continued to manage (alongside Mike Clahsen of BrAshA-T) the www.cureAT.org site which brings together key information about current & past research studies and resulting publications. The site also has sections on care and guidance, patient registries, general information about the condition and a directory of all the known patient organisations around the world. The content is available in several languages including Spanish, French, Italian and Turkish with a simplistic layout directing users to sources of useful information (e.g., websites, documents, relevant groups/meetings, etc.) rather than duplicating existing content on other websites.

Our e-newsletter continues to be a successful tool to communicate our latest news to supporters. Using Mailchimp for this proves to be cheaper than a traditional printed newsletter and has the functionality to track usage and monitor engagement. Our e-newsletter is sent to all our consenting supporters, has a clear unsubscribe function and inactive supporters are removed from the mailing list periodically.

Social media remains a key communication tool for the Charity as it is free, easily accessible and can reach wide audiences. It also allows us to engage with our supporters on a more strategic level and build additional support from their own contacts. Posts are carefully managed to ensure that the content is engaging and not repetitive and this more targeted and planned approach helped us increase our followers throughout the year. We will continue to develop our social media presence in 2025 using all available technological advancements, popular platforms, and our celebrity patrons to raise further awareness.

National and Local News Media Coverage

We continued to raise awareness of A-T through a series of articles and editorials in the local, national and industry press and various news websites. In addition, our chief executive and various supporters took part in local TV and radio interviews throughout the year. These helped us highlight the condition to new audiences, recruit volunteers and secure additional support and donations.

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Our Future Plans: Areas of Focus for 2026

The Trustees believe that Action for A-T is well placed to meet its charitable objectives but have also identified the need for further development to strengthen its research activities.

During 2026 we will continue to consolidate and diversify our fundraising activities whilst actively developing existing and seeking new funding partnerships to meet the demands of the A-T research community. We will also continue to promote A-T research to engage new audiences and maintain interest from the research community.

We will implement several measures throughout the year to ensure that the Charity continues to be fit for future purpose and to help us achieve our aim of moving closer to tangible therapies or a cure for A-T.

Strengthening our Capacity and Capabilities

As a small charity, we have limited resources and must therefore think very carefully before choosing to invest in new activities or personnel to help us deliver our charitable objectives. Our size and structure enable us to adapt quickly, and we will continue to review and prioritise projects based on available resources whilst seeking out new opportunities to raise funds in a safe and sustainable manner.

Continuing our Investment in Medical Research in the UK and Abroad

We will continue to seek out new research opportunities from the wider research community as well as focussing on key research themes related to A-T. Where possible, priority will be given to UK based projects whilst still calling for international applications where funds will allow. Our current grant round is due to conclude in August 2026, and we hope to invest circa £1,000,000 in new A-T research studies alongside our new strategic partner AMR.

We will maintain our close relationship with the Association of Medical Research Charities (AMRC) to develop and improve our peer review process and ensure that the research we fund is of the highest quality. We also hope to secure our third Excellence in Peer Review audit award at some point in 2026.

We will continue to recruit new members for our College of Experts to ensure we have a broad range of scientific experts from all areas of A-T research and additional areas of scientific technical expertise. The College of Experts will make recommendations for funding for A-T project grants, non-drug approaches and fellowship schemes. We will also secure new lay representation from various A-T families as Action for A-T strongly supports public and patient engagement in its research processes.

Strengthening and Increasing our Fundraising Activities

We will continue to develop a pipeline of new business opportunities whilst delivering our existing portfolio of activities. We will maintain and refresh our calendar of high profile and fun events whilst also working alongside others in a benefitting capacity to reduce the financial risk to the Charity. We will continue to develop and expand our trust and foundations programme whilst actively seeking new investment from individuals, corporates, and major donors. We will also work closely with our key supporters and volunteer groups to ensure we maintain the momentum of investment in ground-breaking A-T research.

Working Closely with Others to Meet our Objectives

We will continue to work closely with key stakeholders (especially the A-T Alliance members) as well as exploring new collaborations that will bring greater benefit to the wider A-T community. The number of promising research opportunities continues to grow steadily year on year and there are now more research themes worthy of exploration than our limited funds will allow. We will therefore continue to work with and seek out new organisations with similar objectives to our own, to help ease the financial burden and speed up the process of finding a therapy or cure for A-T.

Increasing Awareness of our Work and the Condition

Since we were established in 2012, a key priority has been raising awareness of A-T and the work of the Charity. This has been achieved by various means including celebrity endorsement, emotive films featuring researchers and A-T

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families and various branding opportunities. We will continue to do all that we can to highlight A-T whilst focusing on various key projects in 2026. These projects will include maximising celebrity endorsement opportunities, the creation of a new website and other projects which help to educate and inform people about A-T.

Board Composition

We will continue to evaluate the composition of our Trustee Board to facilitate the growth of the Charity and will consider further appointments to broaden and strengthen the Board’s capabilities.

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Structure, Governance & Management

Governing Document

Action for A-T is a charity registered in England and Wales (No. 1145303). The Charity is governed by the terms of its Trust Deed adopted on 6 January 2012 and as amended on 2 February 2012.

The Trustees have adopted the following policies and procedures for the recruitment, appointment, induction, and training of new Trustees:

Trustee Recruitment and Appointment

The Trustees listed on page 2 have overall responsibility for the strategic direction and effective governance of the Charity. Trustees are either elected or co-opted under the terms of the Trust deed and the total number of Trustees may not be fewer than five. If a vacancy occurs or a skills need is identified, new Trustees are recommended by the existing Trustees and interviewed by the Chairman and at least one other member of the board. Election is by majority vote and potential candidates must be over the age of eighteen and eligible to act. The Trustees will continue to evaluate the composition of the Board and will consider further appointments to broaden and strengthen the Board’s capabilities to facilitate the growth of the Charity.

Trustee Induction and Training

New Trustees receive an induction pack containing a copy of the trust deed, strategy, relevant information about the Charity and its work; and a copy of the Charity Commission literature about the role and responsibilities of being a Trustee. New Trustees are also invited to meet the Chief Executive and team members to learn first-hand how the Charity operates on a day-to-day basis.

During the induction process, new Trustees are also told about the connected parties’ rule, given a copy of the Charity’s conflict of interest policy and asked to sign a Trustee declaration form. Where the Trustees have identified that there is a connection between the charity, or its Trustees and any third party with whom the Charity has dealt with, the Trustees will identify the relationship, and the amounts involved within the notes to the financial statements.

Organisational Structure

The Trustees meet formally four times per year, and no business shall be conducted unless at least one-third of the total number of Trustees at the time, or two Trustees (whichever is greater) are present throughout the meeting. There are two meetings where the focus is on awarding grants for medical research and two meetings where Trustees review strategy and set operating plans and budgets. There is a review of operating and financial performance at every meeting. The Chief Executive is invited to attend all meetings of the Trustees, and the Head of Fundraising is invited to report on plans and progress at specific meetings.

While most of the business of the Charity is conducted at the scheduled Trustee meetings, there are occasional ad-hoc meetings to deal with matters of special interest and regular electronic meetings are held to review ongoing governance objectives.

The Board of Trustees delegates the exercise of certain powers in connection with the management and administration of the Charity as set out below. This is controlled by regular reporting back to the Board of Trustees so that all decisions made under delegated powers can be ratified by the full Board of Trustees in due course.

The charity considers its key management personnel to be the Trustees, Chief Executive, and senior management. Further details on remuneration are disclosed in Note 12 to the accounts.

Action for A-T is committed to the highest standards of ethical conduct in all its activities. The Trustees ensure that the charity operates with integrity, transparency, and accountability, complying with all relevant laws and regulations. While the charity's work does not typically involve high-risk environments, it maintains a zero-tolerance approach to corruption and bribery and upholds fundamental human rights principles in its partnerships and funding activities.

College of Experts

The College of Experts (COE) is chaired by our scientific advisor. Members of the COE have a broad range of scientific expertise in areas relating to A-T. There is also lay representation on the committee as Action for A-T supports public and patient engagement in its research processes. The Trustees are very grateful to all the members of the COE for providing expert guidance and advice on a pro bono basis.

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Chief Executive

The Chief Executive is responsible for the day-to-day management of the Charity’s affairs and is assisted by a small executive team who act under his direction. As well as overseeing the operations of the Charity, the Chief Executive is also responsible for implementing policies as agreed by the Board of Trustees.

Employees, Volunteers and Contractors

The Charity aims to be an organisation where employees, volunteers and contractors enjoy a sense of fulfilment and where they feel supported and developed. All stakeholders are kept fully informed about the Charity’s strategy and objectives, as well as day- to-day news and events. Individuals are encouraged to give their suggestions and views on performance and strategy.

The Charity supports equal opportunities, and a policy of recruitment and promotion based on aptitude and ability without discrimination is followed. Action for A-T is committed to the training, career development and promotion of all its employees. An individual’s career development is assessed through annual appraisal and supervision. Training programmes are provided to meet any on-going needs, with the aim of developing individuals for both their current and their future roles.

Pay and Remuneration of Key Management Personnel

The Trustees’ principles are to pay staff a fair salary that is competitive within the charity sector, proportionate to the complexity of each role, it’s related funding and responsible in line with the charitable objectives. Pay levels for all employees are reviewed annually and any overall percentage increases are authorised by the Board of Trustees.

Remuneration for the Chief Executive is agreed by the Trustees. Salaries are benchmarked using external data available from pay surveys (for the voluntary sector and charities located in and around London) and market conditions for the specific role and the target is the market median averages of these.

Ultimately however, salary increases relate to the funding available for each role and whether the increase will be affordable in the long term. To ensure pay is fair for all roles we are committed to paying all our employees at or above the London living wage as determined by the Living Wage Foundation.

Engagement with Key Stakeholders

The charity recognises the importance of maintaining strong relationships with its key stakeholders, including funders, research institutions, beneficiaries, and partner organisations. During the year, we continued to work closely with medical research bodies and donor networks to ensure that our funding efforts align with the most impactful research opportunities. Trustees have actively engaged with stakeholders through regular meetings, reporting, and collaborative initiatives to advance our mission

Risk Management

The Trustees have introduced a formal risk management process to assess business risks and implement risk management strategies. This has involved identifying the types of risks the Charity faces, prioritising them in terms of potential impact and likelihood of occurrence, and identifying means of mitigating the risks.

As part of this process the Trustees have reviewed and are satisfied with the adequacy of the Charity’s current internal controls and the costs of operating controls relative to the benefits obtained. Procedures have been established for reporting failings immediately to the Chief Executive and to the Board of Trustees.

The Trustees have identified the following as the principal risks facing the charity:

• Reputational risk: the potential loss of reputation arising from error or fraud. This is mitigated through strong governance, internal controls and oversight by the Trustees.

• Income risk: the potential reduction or loss of income from donations, grants and fundraising activities. The charity mitigates this risk by maintaining a diversified funding base and actively managing relationships with donors and supporters.

• Operational capacity risk: the risk of insufficient Trustees or staff to effectively deliver the charity’s objectives. This is managed through ongoing review of organisational structure and succession planning.

• Financial sustainability risk: the risk of insufficient funds to meet the charity’s objectives. The Trustees manage this through regular financial monitoring, budgeting and maintaining appropriate reserves.

• Reserves perception risk: the risk that holding excessive reserves without clear justification may deter future donors and fundraisers. The Trustees address this through transparent reporting and a clearly defined reserves policy.

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In addition, the Trustees recognise that the charity has ongoing commitments in respect of multi-year research grants. These commitments are carefully assessed before approval and are regularly monitored to ensure that sufficient funds are available to meet obligations as they fall due.

The Trustees also actively monitor financial risks to ensure the charity remains financially stable. Key financial risks include:

Based on the above, and the controls in place, the Trustees consider that the principal risks facing the charity are appropriately managed and do not pose a material threat to the charity’s ability to continue as a going concern.

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Financial review

The Trustees are satisfied with the performance of the Charity and consider that the Charity is in an excellent position to continue its activities during the coming year, and the Charity’s reserves are adequate to fulfil its current obligations.

Income

At present, research into A-T is heavily dependent on charitable donations and by extension, Action for A-T’s ability to instigate, organise and facilitate the fundraising efforts of our supporters and donors. The principal source of funding is donations from individuals, companies, and proceeds of fundraising events.

Total income raised in 2025 was £905,048 (2024 - £1,168,113).

Charitable Expenditure

Total expenditure for the year was £444,162 (2024 - £1,846,493). Of this, expenditure on charitable activities was £362,582 (2024 - £1,755,970), which included £186,515 (2024 - £1,581,917) relating to research grants and associated support costs, of which £116,441 (2024 - £1,518,335) was paid out to research institutions during the year (Note 8).

The cost of generating voluntary income was £81,580 (2024 - £90,523) whilst the cost of staging fundraising and challenge events was £155,430 (2024 - £153,296).

Governance costs of £20,637 (2024 - £20,757) were incurred.

General Funds

The Trustees will aim to make best use of any unrestricted funds; however they reserve the right to retain general reserves in hand until they can be used in the most efficient manner to further the objectives of the Charity. The Trustees are conscious that it should not provide funding for research where they have not been able to demonstrate that its use will offer the best opportunity to further the knowledge and treatment into A-T. Please refer to the investment policy with regard to those times where the Trustees believe general funds are in excess of the anticipated running costs of the Charity.

Designated Funds

Designated funds of £nil were brought forward from 2024. In 2025, £nil of funds were passed on to the research projects detailed in note 8 on page 39.

As at 31 December 2025 designated funds carried forward are £nil.

Restricted Funds

Restricted funds of £96,861 were brought forward from 2024. During the year £17,700 of restricted income was received against projects funded during 2025. During 2025, £105,791 of funding was made to the research projects detailed in note 8 Page 39.

At 31 December 2025 restricted funds of £8,770 (2024 - £96,861) were carried forward and the Trustees are satisfied that the wishes of the donors were met fully. If further funds are received in the future the Trustees will ensure that those funds are used in accordance with those restrictions. Should it not prove possible to adhere to those instructions those funds will be offered back to the provider unless they indicate that they can be used for an alternative purpose.

Investment Policy

The overall policy of the Charity is to maintain a series of designated funds deposit accounts to ring-fence any funds which the Trustees have identified as being made available for specific research projects, or other charitable activities.

The Trustees recognise the need to review this policy on an annual basis and to look at other potential opportunities whilst appropriately monitoring the available funds and being proactive in their management, to ensure the best interests of the Charity's objectives are maintained.

Funds committed for research are paid out in arrears over the duration of the project. The trustees reviewed and agreed

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to deposit funds in timed deposit accounts in order to obtain the best return with minimal managed risk.

During the year the Trustees transfer any funds surplus to general running costs of the Charity into an interest-bearing account which will offer a higher rate of return than holding it in the main Charity bank account. The aim is to ensure that the fund is not diminished over time due to inflation and to ensure that these funds are invested in future research projects.

Reserves Policy

The Trustees review the reserves policy each year to ensure that all relevant risk areas are included in accordance with guidance issued by the Charity Commission. Risks included are the impact of unexpected, reduced income, and the potential impact of restructuring costs and liabilities required to downsize the organisation in an orderly manner, if a permanent income reduction was anticipated.

The review concluded that the existing reserve target level of Six months of operating costs (approx. £150,000) was sufficient to cover the risks identified in the review. This allows sufficient time for Trustees and management to take appropriate mitigating actions, if required.

The Trustees continue their commitment to develop and grow the level of investment in research into A-T, whilst maintaining a focus on managing the overall costs of the charity.

Going concern

The Trustees consider that there are no material uncertainties about the Charity's ability to continue as a going concern. The Trustees have given consideration to the Charity's long-term future and considered what risks (see the Trustees' Report) could result in a situation where a going concern basis was not appropriate. They believe that safeguards are sufficient to ensure that both in the short and medium term the assets and reputation of the Charity are sufficiently safeguarded to ensure that the Charity is a viable going concern.

Post Year End Events

On 12 February 2026 the Charity entered into a co-funding agreement with the Department of Health and Social Care under the Medical Research Charity Support Fund. Further details are given in Note 28. There have been no other significant events between the balance sheet date and the date of approval of these financial statements that, in the Trustees’ opinion, would materially impact the financial position of the Charity.

Statement of Trustees Responsibilities

The Trustees are responsible for preparing the Trustees’ Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England & Wales requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the Charity and of the incoming resources and application of resources of the Charity for that period. In preparing these financial statements, the Trustees are required to:

The Trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the Charity and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charities (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the Charity 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 Charity and financial information included on the Charity’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

Toby Read (Chairman) Dated: 11th May 2026

William Rowberry (Treasurer) Dated: 11th May 2026

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Auditors Report

Independent Auditor’s Report to the Trustees of Action for A-T

Opinion

We have audited the financial statements of Action for A-T Registered Charity Number: 1145303 (the 'charity') for the year ended 31 December 2025 which comprise the Statement of Financial Activities, the Statement of Financial Position, the Statement of Cash Flows and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

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 Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the Charity 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.

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 Charity'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, other than the financial statements and our Report of the Independent Auditors 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 this gives rise to a material misstatement in the financial statements themselves. 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.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion:

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Responsibilities of Trustees

As explained more fully in the Statement of Trustees' Responsibilities, the Trustees are responsible for the preparation of the financial statements which 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 Charity'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 Charity or to cease operations, or have no realistic alternative but to do so.

Our responsibilities for the audit of the financial statements

We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.

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 a Report of the Independent Auditors 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.

The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

  1. Identify and assess the risks of material misstatement of the financial statements, whether due to fraud or error, design and perform audit procedures responsive to those risks, and obtain audit evidence that is sufficient and appropriate to provide a basis for our opinion. The risk of not detecting a material misstatement resulting from fraud is higher than for one resulting from error, as fraud may involve collusion, forgery, intentional omissions, misrepresentations, or the override of internal control.

  2. Obtain an understanding of internal control relevant to the audit in order to design audit procedures that are appropriate in the circumstances, but not for the purpose of expressing an opinion on the effectiveness of the Charity's internal control.

  3. Evaluate the appropriateness of accounting policies used and the reasonableness of accounting estimates and related disclosures made by the Trustees.

  4. Conclude on the appropriateness of the Trustee's use of the going concern basis of accounting and, based on the audit evidence obtained, whether a material uncertainty exists related to events or conditions that may cast significant doubt on the Charity's ability to continue as a going concern. If we conclude that a material uncertainty exists, we are required to draw attention in our auditor's report to the related disclosures in the financial statements or, if such disclosures are inadequate, to modify our opinion. Our conclusions are based on the audit evidence obtained up to the date of our auditor's report.

  5. Evaluate the overall presentation, structure, and content of the financial statements, including the disclosures, and whether the financial statements represent the underlying transactions and events in a manner that achieves fair presentation.

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 Report of the Independent Auditors.

Use of our report

This report is made solely to the Charity's Trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the Charity's Trustees those matters we are required to state to them in an auditors' 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 Charity and the Charity's Trustees as a body, for our audit work, for this report, or for the opinions we have formed.

For and on behalf of A & N (Haslemere) Limited - Statutory Auditors Aruna House 2 Kings Road Haslemere, Surrey, GU27 2QA Dated: 27th March 2026

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Statement of Financial Activities

for the year ended 31 December 2025

Income and Endowments from
Donation and legacies
Expenditure on
Raising funds
Reconcilliation of Funds
Total Funds Brought Forward
Charitable Activities
Fundraising & challenge events
Charitable Activities
Fundraising & challenge events
Investment income
Grants
Governance costs
Other income
Total
Total
Net Income / (Expenditure)
Total Funds Carried Forward		 Unrestricted
Funds
£
Notes
Restricted
Funds
£
31.12.25
Total Funds
£
31.12.24
Total Funds
£
3
5
4
332,656
481,627
73,065
-
17,700
-
-
-
593,000
480,466
94,647
-
350,356
481,627
73,065
-
6
7
8
81,580
155,430
80,724
20,637
887,348
-
-
105,791
-
17,700
90,523
153,296
1,581,917
20,757
1,168,113
81,580
155,430
186,515
20,637
905,048
338,371
105,791
1,846,493
444,162
548,977
139,484
(88,091)
96,861
(678,380)
914,725
460,886
236,345
688,461
8,770
236,345
697,231

31

Statement of Financial Position

for the year ended 31 December 2025

Fixed Assets
Tangible assets
Current Assets
Stocks
Debtors
Cash at bank
Funds
Unrestricted funds
Restricted funds
Total Funds
Creditors
Amounts falling due within one year
Creditors
Amounts falling due after more than one year
Net Current Assets
Net Assets
Total Assets Less Current Liabilities		 Unrestricted
Funds
£
Notes
Restricted
Funds
£		 31.12.25
Total Funds
£
31.12.24
Total Funds
£
18
19
20
21
216
13,170
8,560
2,458,710
-
-
-
8,770		 216
20,863
58,429
2,316,849
216
13,170
8,560
2,467,480
22
(519,943)
-		 (815,714)
2,396,141
(519,943)
1,960,497
8,770		 1,580,427
1,969,267
23
(1,272,252)
1,960,713
-
8,770		 (1,344,298)
1,580,643
(1,272,252)
1,969,483
688,461
8,770		 236,345
697,231
25 139,484
96,861
688,461
8,770
236,345
697,231

The financial statements were approved by the Board of Trustees and authorised for issue on 11 May 2026 and were signed on its behalf by:

Toby Read (Chairman) Dated: 11th May 2026

William Rowberry (Treasurer) Dated: 11th May 2026

32

Statement of Cash Flows

for the year ended 31 December 2025

Cash flows from operating activities
Cash generated from operations
Net cash provided by operating activities
Cash flows from investing activities
Interest received
Change in cash and cash equivalents in
the reporting period
Cash and cash equivalents at the
beginning of the reporting period
Cash and cash equivalents at the end of
the reporting period
Net cash provided by investing activities
1
Notes		 31.12.25
£
31.12.24
£
292,341
89,304
292,341
89,304
94,647
61,327
94,647
61,327
386,988
1,929,861
150,631
2,316,849
2,316,849
2,467,480

33

Notes to the Statement of Cash Flows

for the year ended 31 December 2025

1. Reconciliation of net (expenditure)/income to net cash flow from operating

Adjustments for:
Depreciation charges
Interest received
(Increase)/decrease in stocks
Decrease in debtors
Increase/(decrease) in creditors
Net cash
Cash at bank
Total
Net (expenditure)/income for the reporting period (as per
the Statement of Financial Activities)
Net cash provided by operations
activities
2. Analysis of changes in net funds		 At 1.1.25
£
2,316,849		 31.12.25
£
31.12.24
£
(678,380)
-
(1,878)
(94,647)
(16,631)
1,083,877
460,886
-
7,693
(61,327)
49,869
(367,817)
292,341
89,304
Cash Flow
£
150,631
31.12.25
£
2,467,480
2,316,849 150,631
2,467,480
2,316,849 150,631
2,467,480

34

Notes to the Financial Statements

For the Year Ended 31 December 2025

1. Accounting Policies

Basis of preparing the financial statements

The financial statements of the charity, which is a public benefit entity under FRS102, have been prepared in accordance with the Charities SORP (FRS102) '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 (FRS102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011.

The financial statements have been prepared under the historical cost convention. The accounts are prepared in £ sterling to the nearest £1.

Action for A-T meets the definition of a public benefit entity under FRS102. Assets and liabilities are initially recognised at historic cost or transaction value unless otherwise stated in the relevant accounting policy notes.

Accounting convention

The financial statements are prepared on a going concern basis, under the historic cost convention.

The Charity is entirely dependent on receiving income from fundraising and donations and as a consequence the going concern basis is also dependent on the continuation of such income.

Incoming resources

All incoming resources are included in the Statement of Financial Activities under FRS102 when that receipt is probable, whereas it was previously recognised when the Charity is legally entitled to the income and the amount can be quantified with reasonable accuracy. For legacies, entitlement is the earlier of the Charity being notified of an impending distribution or the legacy being received.

Gifts in kind, including donated professional services are recognised as income when the Charity has control over them, any conditions associated with the donated item have been met, the receipt of economic benefit from the use of by the Charity if the item is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS102), the general volunteered time is not recognised and refer to the Trustees' Report for more information about this contribution.

On receipt, donated professional services are recognised on the basis of the value of the gift to the Charity which is the amount the Charity would have been willing to pay to obtain that service on the open market.

Gifts in kind donated for distribution are included at fair value upon receipt under FRS102 subject to the cost of recognition outweighing the benefit provided to Action for A-T. Previously they were included at a valuation and recognised as income when they are distributed. Any donated facilities are included at the value to the Charity where this can be quantified, and a third party is bearing the cost. No amounts are included in the financial statements for services donated by volunteers.

Resources expended

All expenditure is accounted for on an accruals basis and has been included under expense categories that aggregate all costs allocated to activities. Where costs cannot be directly attributed to particular activities, they have been allocated on a basis consistent with the use of the resources.

Overheads have been allocated on the basis of the activity income of the Charity.

Fundraising costs are those incurred in seeking voluntary contributions and do not include the costs of disseminating information in support of charitable activities. Support costs are those costs incurred directly in support of expenditure on the objects of the Charity and include project management carried out by the Trustees. Governance costs are those incurred in connection with the administration of the Charity and compliance with constitutional and statutory requirements.

Grants offered subject to conditions which have not been met at the year-end date are noted as a commitment but not accrued as expenditure.

35

Governance costs

Governance costs comprise all costs involving the public accountability of the Charity and its compliance with regulations and good practice. These costs include costs related to the audit, legal fees, and apportionment of overheads.

Allocation and apportionment of costs

Fundraising Events & Challenge Events costs are allocated in their income ratio during the year.

Tangible fixed assets

Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.

Computer equipment - 33% on cost

Stocks

Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slowmoving items.

Taxation

The Charity is exempt from tax on its charitable activities.

Fund accounting

General Funds

General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the Charity and which have not been designated for other purposes.

Restricted Funds

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors which have been raised by the Charity for particular purposes. The cost of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements. Any investment income, gains or losses are allocated to the appropriate fund.

Action for A-T has no designated funds as at 31st December 2025. All unrestricted funds remain available for general use at the discretion of the Trustees

Designated funds

Designated Funds are funds set aside by the Trustees out of general reserves for a particular purpose. The aim and use of each designated fund is set out in the notes to the financial statements. The Trustees will review the funds on an ongoing basis. At the conclusion of the purpose for the fund any excess remaining funds will be transferred back into general funds. If a shortfall arises the Trustees will consider whether any additional general funds should be transferred to designated funds. Any investment income, gains or losses are allocated to the appropriate fund.

Foreign currencies

Assets and liabilities in foreign currencies are translated into sterling at the rate of exchange ruling at the balance sheet date. Transactions in foreign currencies are translated into sterling at the rate of exchange ruling at the date of the transaction. Exchange differences if applicable are taken into the Statement of Financial Activities.

36

2. Critical accounting judgements and key sources of estimation uncertainty

Critical Accounting Estimates And Judgements

In the application of the Charity’s accounting policies, the Trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.

The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised, if the revision affects only that period, or in the period of the revision and future periods if the revision affects both current and future periods.

1. Grant Commitments

The Charity awards grants to support research into Ataxia Telangiectasia. The recognition of grant commitments is based on formal agreements and the likelihood of meeting performance conditions. At 31 December 2025, grant commitments totalled £1,790,933 all of which have been recognised as a liabilities there are no awarded grants left unrecognised.

2. Provisions for Liabilities and Charges

The Charity reviews potential liabilities arising from ongoing contractual obligations. Where a liability is probable and can be reliably estimated, a provision is recognised.

3. Depreciation of Fixed Assets

The Charity depreciates tangible fixed assets over their estimated useful lives. The estimated useful life of assets is reviewed annually, with the current rates as follows:

4. Accrued Income and Donations

The recognition of income from certain fundraising events and donations is based on an assessment of whether the income is probable and can be measured reliably. Estimates are applied where donations or pledges are confirmed but not yet received.

Key Sources of Estimation Uncertainty

The annual depreciation charge for tangible fixed assets in sensitive to changes in the estimated useful economic lives and residual value of fixed assets. The useful economic lives and residual values are reassessed on an annual basis. They are amended where deemed necessary to reflect current estimations based on physical condition, utilisation and advancement of technologies. Note 10 discloses the carrying value if the tangible fixed assets and the depreciation policy is listed above in accounting policies.

37

3. Donations and Legacies

Donations and Legacies
Raising Funds
Income from Charitable Activities
Investment Income
Unrestricted
Funds
£
Unrestricted
Funds
£
Activity
Unrestricted
Funds
£
Donations
Gift aid
Fundraising
Fundraising events
Challenge events
Staff costs
Trusts & Foundations
Support costs
Bank Interest
79,259
60,670
-
20,910
81,580
Fundraising & Challenge events
Fundraising & Challenge events
73,065
-
33,622
219,775
332,656
17,700
-
-
-
-
-
-
-
17,700
Restricted
Funds
£
Restricted
Funds
£
Restricted
Funds
£		 Unrestricted
Funds
£
Restricted
Funds
£		 31.12.25
Total Funds
£
31.12.24
Total Funds
£
79,259
33,622
219,775
17,700
-
-		 78,147
31,837
483,016
96,959
33,622
219,775
332,656
17,700		 593,000
350,356
Unrestricted
Funds
£
Restricted
Funds
£		 31.12.25
Total Funds
£
31.12.24
Total Funds
£
73,065
-
-		 94,647
73,065
-
31.12.25
£
31.12.24
£
266,981
213,485
237,043
244,584
480,466
481,627
31.12.25
Total Funds
£
31.12.24
Total Funds
£
60,670
-
20,910
-
-
-		 69,937
870
19,716
60,670
-
20,910
81,580
-		 90,523
81,580

4. Investment Income

5. Income from Charitable Activities

6. Raising Funds

38

7. Charitable Activities Costs

7. Charitable Activities Costs
Direct
Costs
£
Fundraising & Challenge events
Grants
Governance cost
134,520
-
-
134,520
-
116,441
-
116,441
155,430
186,515
20,637
362,582
20,910
249,615
246,867
249,128
250,000
24,915
249,332
249,806
19,960
19,238
19,997
(6,044)
70,074
20,637
111,621
Grant Funding
of Activities
(see note 8)
£
Support Costs
(see note 9)
£
Totals
£
8. Grants Payable
Grants
1,518,335
116,441
31.12.25
£
31.12.25
£
31.12.24
£
31.12.24
£
The total grants paid to institutions during the year was as follows:
Universities of Birmingham, UK & Hamburg, Germany – Development of
suppressor tRNA-based therapeutics
University of Nottingham, UK – Biomarkers for babies and young children with A-T
University of North Carolina, USA – Development of a gene therapy approach to treat A-T
Leiden University Medical Centre, Netherlands – Functional impact of
Nicotinamide Riboside on the immune system of patients with A-T
University College London, UK – Exploring Omaveloxolone efficacy in A-T
University of Birmingham, UK – Identifying existing drugs to repurpose for treating A-T
University of Kent, UK – Investigating the role of mutant triple T chaperone in ATM
assembly in A-T
University of Cambridge, UK - Improving diagnosis and treatment of cancer in A-T
patients through whole genome sequencing
University of Nottingham, UK – Kicking Kinases into action: A novel drug screening
assay for A-T
University of Nottingham, UK – Exploring the use of assistive robots, smart sensing &
digital twin models for monitoring and support of Ataxia in non-clinical environments
University of Granada, Spain – (Research project underspends refunded)
Innovative methods for gene therapy in Ataxia-Telangiectasia		 Direct
Costs
£
Grant Funding
of Activities
(see note 8)
£
Support Costs
(see note 9)
£
Totals
£
134,520
-
-
-
116,441
-		 155,430
186,515
20,637
20,910
70,074
20,637
134,520
116,441		 362,582
111,621
31.12.25
£
31.12.24
£
1,518,335
116,441
31.12.25
£
31.12.24
£
249,615
246,867
249,128
250,000
24,915
249,332
249,806
19,960
19,238
19,997
(6,044)

39

The total grants paid to institutions during the year (continued)

University of Nottingham, UK – (Research project underspends refunded)
The David Peake Study to test the feasibility of whole-body MRI for cancer
surveillance in children and young people with A-T
Sheba Medical Centre, Israel - Using new immunotherapy methods to treat
lymphoma and leukaemia in A-T
Duke University, USA - A new function for ATM and a new theory for the clinical
abnormalities in A-T
University of Rochester, USA - Recurrent pulmonary infections and their impact
on neurological decline in A-T
University of Plymouth, UK - The ATeam: Coproducing guidance and investigating a
novel complex home-based intervention to optimise long-term healthy living with A-T
QIMR Berghofer Medical Research Institute, Queensland, Australia – Dose
response and mechanistic profiling of two candidate neuroactive drugs in A-T
cerebellar organoids
University of Nottingham, UK - Improving future treatments for Ataxia-
Telangiectasia through better delivery of RNA-based therapies
University of Nottingham, UK - Developing a Safer Immune-Based Treatment for
Blood Cancers in Children and Adults with A-T
University of Nottingham, UK - A prospective pilot study to compare lung CT
and MRI in Ataxia Telangiectasia		 31.12.25
£
31.12.24
£
(13,208)
(10,408)
(4,440)
(8,334)
(18,089)
58,253
18,388
19,905
19,895
116,441
1,518,335

40

9. Support Costs

Support Costs
Raising donations and legacies
Fundraising & challenge events
Grants
Governance costs		 Management
£
Finance
£
Information
Technology
£
Other
£
Wages
£
Governance
Costs
£
Totals
£
8,490
8,490
-
-
511
511
-
-
1,906
1,906
-
-
10.003
10.003
-
-
-
-
70,074
-
-
-
-
20,637
20,910
20,910
70,074
20,637
16,980
1,022
3,812
20,006
70,074
20,637
132,531

Activity Basis of allocation Management 50 % Raising Donation & legacies 50 % Fundraising & Challenge Events Finance 50 % Raising Donation & legacies 50 % Fundraising & Challenge Events Information technology 50% Raising Donation & legacies 50 % Fundraising & Challenge Events Human resources 50 % Raising Donation & legacies 50 % Fundraising & Challenge Events Other 50 % Raising Donation & legacies 50 % Fundraising & Challenge Events Governance costs 100% Governance cost

10. Auditors Remuneration

Fees payable to the charity's auditor for the audit of the financial statements: £4000 (2024: £4000). Fees payable for non-audit services: £1,498 (2024: £1,437).

11. Trustees' Remuneration and Benefits

There were no Trustees' remuneration or other benefits for the year ended 31 December 2025 nor for the year ended 31 December 2024.

Trustees' expenses

There were no Trustees' expenses paid for the year ended 31 December 2025 nor for the year ended 31 December 2024.

12. Staff Costs

. Staff Costs
Wages and salaries
Social security costs
Pension costs
Total		 Dec
2025
£
Dec
2024
£
140,631
14,044
11,276
133,575
18,133
11,277
165,951
162,985

The average number of persons employed during the year was 4 (2024: 4).

The number of employees whose employee benefits (excluding employer pension costs) exceeded £60,000 was: £70,000– £80,000: 1 (2024: 1).

The total employee benefits of key management personnel were £149,685 (2024: £151,716).

41

13. Comparatives for the Statement of Financial Activities

Income and endowments from
Donations and legacies
Charitable activities
Fundraising & challenge events
Investment income
Other income
Expenditure on
Raising funds
Charitable activities
Fundraising & challenge events
Grants
Governance costs
Net income/(expenditure)
Total funds carried forward
Reconciliation of funds
Total funds brought forward
Total
Total		 Unrestricted
Funds
£
Restricted
Funds
£
Total
Funds
£
466,500
480,466
-
94,647
126,500
-
-
-
593,000
480,466
-
94,647
1,041,613
126,500
1,168,113
90,523
150,864
1,516,629
20,817
-
-
67,660
-
90,523
150,864
1,584,289
20,817
1,778,833
67,660
1,846,493
(737,220)
876,704
58,840
38,021
(678,380)
914,725
139,484
96,861
236,345

42

14. Employee Benefits

The cost of any unused holiday entitlement is recognised in the period in which the employee’s services are received.

Termination benefits would be recognisable immediately as an expense when the Charity is demonstrably committed to terminate an employee’s employment or to provide termination benefits.

15. Pension Costs

The charity participates in a defined benefit pension scheme. The pension costs charged in the financial statements represent the contributions paid by the Charity during the year amounting to £11,276 (2024 £11,312).

16. Financial Instruments

The Charity 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 are subsequently measured at their amortised cost.

17. Creditors and Provisions

Creditors and provisions are recognised where the Charity 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.

18. Tangible Fixed Assets

Cost At 1 January 2025 and 31 December 2025 Depreciation At 1 January 2025 and 31 December 2025 Net Book Value At 31 December 2025 At 31 December 2024

Computer Equipment £ 2,358 2,142 216 216

43

19. Stocks

. Stocks
Stocks 31.12.25
£
31.12.24
£
20,863
13,170

Stocks are stated at the lower of cost and estimated selling price less costs to complete and sell. Cost includes all costs of purchase, costs of conversion and other costs incurred in bringing stock to its present location and condition. Due allowance is made for obsolete and slow-moving items.

Donated stocks are fair valued when their economic benefit is probable, it can be measured reliably, and the Charity has control over the item.

20. Debtors: Amounts Falling Due Within One Year

. Debtors: Amounts Falling Due Within One Year . Debtors: Amounts Falling Due Within One Year
. Cash at Bank
Deposit
Prepayments and accrued income
Trade and other debtors are recognised at the settlement amount due after any trade
at the amount prepaid net of any trade discounts due.
Unrestricted
Funds
£
Bank Current Accounts
Reserve Account
Investment Accounts
Total
31,089
556,749
1,870,872
2,458,710
-
8,770
-
8,770
Restricted
Funds
£		 31.12.25
£
31.12.24
£
925
57,504
58,429
935
7,635
8,560
31,089
556,749
1,870,872
-
8,770
-		 38,193
719,111
1,559,545
31,089
565,519
1,870,872
2,458,710
8,770		 2,316,849
2,467,480

21. Cash at Bank

Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of twelve months or less, and bank overdrafts. Should any bank overdrafts arise they would be shown within borrowings in current liabilities.

44

22. Creditors: Amounts Falling Due Within One Year

. Creditors: Amounts Falling Due Within One Year
. Creditors: Amounts Falling Due After More Than One Year
Grant Payable
Accruals and deferred income
Grants payable
810,729
4,985
1,344,298
815,714
518,681
1,262
1,272,252
519,943
31.12.25
£
31.12.25
£
31.12.24
£
31.12.24
£		 31.12.25
£
31.12.24
£
810,729
4,985
815,714
518,681
1,262
519,943
1,344,298
1,272,252

23. Creditors: Amounts Falling Due After More Than One Year

24. Leasing Agreements

During the next twelve months the Charity has operating lease commitments totalling £14,055 (2024 - £13,014) for contracts expiring in more than one year. The total future commitments are £14,055 (2024 - £12,960)

25. Movement in Funds

. Movement in Funds
Net movement in funds, included in the above are as follows:
Unrestricted Funds
Unrestricted Fund
Unrestricted Funds
Unrestricted Fund
Restricted Funds
Restricted Fund
Restricted Funds
Restricted Fund
Total Funds
Total Funds		 At
1.1.25
£
Net Movement
in Funds
£
At
31.12.25
£
139,484
96,861
548,977
(88,091)
688,461
8,770
236,345
460,886
697,231
Incoming
Resources
£
Resources
Expended
£
Movement
in Funds
£
887,348
17,700
(338,371)
(105,791)
548,977
(88,091)
905,048
(444,162)
460,886

45

Comparatives for movement in funds:

Unrestricted Funds
Unrestricted Fund
Restricted Funds
Restricted Fund
Total Funds		 At
1.1.24
£
Net Movement
in Funds
£
At
31.12.24
£
876,704
38,021
(737,220)
58,840
139,484
96,861
914,725
(678,380)
236,345

Comparative net movement in funds, included in the above are as follows:

Incoming Resources Movement
Resources Expended in Funds
£ £ £
Unrestricted Funds
Unrestricted Fund 1,041,613 (1,778,833) (737,220)
Restricted Funds
Restricted Fund 126,500 (67,660) 58,840
Total Funds 1,168,113 (1,846,493) (678,380)
A current year 12 months and prior year 12 months combined position is as follows:
At Net Movement At
1.1.24 in Funds 31.12.25
£ £ £
Unrestricted Funds
Unrestricted Fund 876,704 (188,243) 688,461
Restricted Funds
Restricted Fund 38,021 (29,251) 8,770
Total Funds 914,725 (217,494) 697,231

46

A current year 12 months and prior year 12 months combined net movement in funds, included in the above are as follows:

Unrestricted Funds
Unrestricted Fund
Restricted Funds
Restricted Fund
Total Funds		 Incoming
Resources
£
Resources
Expended
£
Movement
in Funds
£
1,928,961
144,200
(2,117,204)
(173,451)
(188,243)
(29,251)
2,073,161
(2,290,655)
(217,494)

26. Related Party Disclosures

The Trustees all give freely their time and expertise without any form of remuneration or other benefits in cash or kind (2024 - £nil). There are no expenses paid to the Trustees in the year. No Trustee is deemed to have benefited as a result of a related party connection. All Trustees have declared all such relationships to the Chairman.

27. Ultimate Controlling Party

The Trustees control Action for A-T in accordance with the trust deed.

28. Post Balance Sheet Events

The Trustees have considered events occurring between the balance sheet date and the date on which these financial statements were authorised for issue. The following non-adjusting event has been identified for disclosure under FRS 102 Section 32:

DHSC Medical Research Charity Support Fund

On 12 February 2026 the Charity entered into a co-funding agreement with the Secretary of State for Health and Social Care under the Medical Research Charity Support Fund. The agreement provides for the Charity to receive £243,702.56 in respect of the initial funding year (1 April 2025 to 31 March 2026), with payment due within 30 days of signature. The funding supports seven existing research projects at UK universities to which the Charity has previously committed grant funding.

The agreement was entered into after the balance sheet date and accordingly the entitlement to the funding had not arisen as at 31 December 2025. The amount has therefore not been recognised in these financial statements and will be recognised as income in the financial statements for the year ending 31 December 2026.

Other matters

There have been no other significant events between the balance sheet date and the date of approval of these financial statements that, in the Trustees’ opinion, require disclosure or adjustment to the financial statements.

47

Detailed Statement Of Financial Activities

For the year ended 31 December 2025

Income and Endowments from
Expenditure
Donations and legacies
Donations
Gift aid
Fundraising
Raising donations and legacies
Wages
Trusts and Foundations
Charitable activities
Event Campaign Costs
Grants to institutions
Support Costs
Management
Wages
Finance
Bank charges
Information technology
Repairs and renewals
Charitable activities
Fundraising events
Challenge events
Investment Income
Bank Interest
Total Incoming Resources		 Unrestricted
Funds
£
Restricted
Funds
£
31.12.25
Total Funds
£
31.12.24
Total Funds
£
79,259
33,622
219,775
17,700
-
-
78,147
31,837
483,016
96,959
33,622
219,775
237,043
244,584
332,656
73,065
-
-
17,700
-
266,981
213,485
593,000
94,647
237,043
244,584
350,356
73,065
481,627
-
480,466
481,627
60,670
-
887,348
-
-
17,700
69,937
870
1,168,113
60,670
-
905,048
120,800
10,650
60,670
-
105,791
-
131,146
1,518,335
70,807
120,800
116,441
60,670
131,450
16,980
1,022
3,812
105,791
-
-
-
1,649,481
17,111
1,273
2,663
237,241
16,980
1,022
3,812

48

Detailed Statement Of Financial Activities (Cont)

For the year ended 31 December 2025

Other
Rent, Rates and water
Insurance
Telephone
Postage and stationery
Sundries
Advertising
Donation collection fees
Governance Costs
Wages
Auditors' remuneration
Accountancy and legal fees
Computer equipment
Total Resources Expended
Net (expenditure)/income
Wages
Wages		 Unrestricted
Funds
£
Restricted
Funds
£
31.12.25
Total Funds
£
31.12.24
Total Funds
£
14,055
948
541
465
1,194
1,376
1,427
-
-
-
-
-
-
-
13,672
947
544
372
679
1,022
1,151
14,055
948
541
465
1,194
1,376
1,427
15,139
4,000
1,498
-
20,006
70,074
-
-
-
-
-
-
15,320
4,000
1,437
-
18,387
63,582
15,139
4,000
1,498
-
20,006
70,074
20,637
-
20,757
20,637
338,371
105,791
1,846,493
444,162
548,977
(88,091)
(678,380)
460,886

49

Acknowledgements

Action for A-T relies entirely on its donors and supporters who so generously give their time and money to support vitally needed research into A-T. With their support we believe we can make a difference to all people with A-T and their families.

We would like to give special thanks to the following organisations that worked alongside us in 2025:

Our Research Partners

BrAshA-T Ataxia Telangiectasia and their Trustees Ataxia Telangiectasia Society AEFAT Action Medical Research Great Ormond Street Hospital Charity

Support from Companies, Trusts & Foundations

We are aware that Companies, Trusts & Foundations are often approached to support charities and are therefore extremely grateful to the following organisations and individuals for their generous support.

Ardwick Trust Aviva Investors Axis Capital Barton Comms Bellway Homes BCA BGC Partners Big Give Blyth Watson Charitable Trust Brightwake Cinch Clarion Golf Claire Buckley School of Dance Constellation Group Epsom Rotary Club Enterprise Holdings Henrik Bergrem Hospital Saturday Fund Mollie’s Miracle Team Monica Seccombe Michael Cornish Charitable Trust Michael & Anna Wix Charitable Trust N Smith Charitable Settlement Oakdale Trust Quest Professional Rawson Digital Rest Harrow Trust Robin Hewison Sir Samuel Scott of Yews Trust Syder Foundation Stewart Golf Ltd UKG Woodcock Brothers

Corporate or professional services provided by:

A & N Chartered Accountants Gecko Graphic Design MPS Marketing Services Ltd

Our Supporters

We have relied almost exclusively on our supporters, volunteers and Trustees for their time and commitment to raising money and spreading awareness about this devastating condition. Thank you to everyone who has helped us to push research into A-T forwards.

50

Action for A-T, Aruna House, 2 Kings Road, Haslemere, Surrey GU27 2QA. 01428 853313 | info@actionforAT.org | www.actionforAT.org