2022-12-31-accounts - Action For A-T

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Annual Report & Financial Statements for the year ended 31st December 2022 Action for A-T - Charity registered number 1145303 www.ActionforAT.org1

Legal And Reference Information

Patrons

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

Professor Matthew Wood, Professor of Neuroscience and Deputy Head of the Medical Sciences Division at the University of Oxford

Patient Representatives

Mr Amandeep Sharma Mrs Clare Gallagher Mrs Natasha Schneider

Chief Executive

Sean Kelly

Charity Registration Number

United Kingdom Registered Charity number: 1145303

Trustees at the date of approval

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

Appointed during the year or since year end

None

Research Advisory Committee

Dr Mark Toms, Chairman

Dr Kathryn Johnson, Scientific Advisor, Consultant Neonatologist and Research Lead

Professor David Attwell, Jodrell Professor of Physiology, Department of Neuroscience, Physiology and Pharmacology, University College London (UCL)

Associate Professor Esther Becker, Associate Professor of Neurobiology, The Becker Group, Oxford University

Dr Simon Boulton, Group Leader, DNA Damage Response Laboratory, Cancer Research UK, London Research Institute

Dr Lisa Bunn, Lecturer in Neurological Physiotherapy and Motor Control, University of Plymouth

Professor Keith Caldecott, Professor of Biochemistry ‘Royal Society Wolfson Research Merit Award Holder’, and Deputy Director of the Genome Damage and Stability Centre, University of Sussex

Dr Richard Kay, Medical Statistician

Dr Nizar Mahlaoui, Paediatrician specialising in ImmunoHaematology, Necker-Enfants Malades Hospital, Paris and Coordinator of the French National Reference Centre for Primary Immune Deficiencies (CEREDIH)

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

Dr Guy Makin, Senior Paediatric Oncology Lecturer, University of Manchester

Dr Andrew Prayle, Clinical Assistant Professor, University of Nottingham

Professor Grant Stewart, Professor of Cancer Genetics, School of Cancer Sciences, University of Birmingham

Legal & Reference Information ....................................................................................................................................... 2 Table of Contents ............................................................................................................................................................ 3 Trustees’ Report ............................................................................................................................................................... 4 Reference & Administrative Details ........................................................................................................................ 4 Public Benefit ........................................................................................................................................................ 4 Objectives, Achievements & Performance............................................................................................................... 4 Building our Capacity and Capabilities................................................................................................................... 5 Continuing our Investment in Medical Research in the UK and Abroad................................................................... 5 Funding High Quality Research……………………........................................……………………............................. 6 Ensuring that our research is high quality, peer reviewed and has clear and achievable aims................................... 10 Strengthening and Increasing our Fundraising Activities ......................................................................................... 14 Working Closely with Others to Meet our Objectives ……….................................................................................. 16 Increasing Awareness of our Work and the Condition............................................................................................. 18 Our Future Plans: Areas of Focus for 2023 ............................................................................................................ 20 Structure, Governance & Management ................................................................................................................. 22 Financial Review …………………………………..................................................................................................... 25 Auditor’s Report................................................................................................................................................................ 27 Statement of Financial Activities ………………………………............................................................................................ 30 Notes to the Financial Statements ……………………………….......................................................................................... 34 Acknowledgements........................................................................................................................................................... 48

Trustees’ Report

The Trustees of Action for A-T present their annual report and the financial statements of Action for A-T for the year ended 31 December 2022.

The trustees present their report with the financial statements of the charity for the year ended 31 December 2022. 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, April, September, and November in 2022. 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).

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 7 to 13.

Our Trustees have considered how our work may most effectively further our charitable objectives for the benefit of the public, in particular all those affected by Ataxia Telangiectasia, and have had regard to the Charity Commission’s guidance on public benefit when reviewing activities against objectives set and in planning future activities.

Objects, Achievements & Perfomance

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 2022:

Building our Capacity and Capabilities
Continuing our Investment in Medical Research in the UK and Abroad
Ensuring that our research is high quality, peer reviewed and has clear and achievable aims
Strengthening and Increasing our Fundraising Activities
Working closely with others to meet our objectives
Increasing awareness of our work and the condition
Board Composition

Building our Capacity and 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 infrastructure work has already taken place, but continued development is required to ensure that we are well positioned for the future.

Our Performance

As virtually all pandemic restrictions were dropped at the start of 2022, we were able to plan for most activities with some degree of certainty. An early decision was made to relocate an annual corporate bike ride to the UK as overseas group travel was still complicated and for the first time since the pandemic, we were able to plan and deliver several new mass participation fundraising activities.

In addition to delivering all the events which were previously postponed due to the pandemic, we were able to benefit from a variety of new events such as golf days, a large-scale sponsored walk and a new construction industry ball at the Royal Automobile Club. Our ability to be flexible, innovative and capitalise on new opportunities enabled us to deliver a strong fundraising result.

We incorporated more volunteer support than ever before throughout the year to help us deliver the new planned activities and fundraising initiatives efficiently and effectively. This allowed us to scale up many of the activities and in most cases increase the amount of funds raised.

We continued to explore and implement new technologies to improve our fundraising and communicate with our stakeholders. We also upgraded our CRM database to make better use of our fundraising data and to incorporate the latest cyber security protocols.

We stayed in close contact with all our grant holders to ensure that they had the required resources and were able to restart their projects as expediently as possible. Where appropriate, no cost extensions were granted as some studies requiring patient involvement were still experiencing recruitment issues as many Covid related restrictions were still in place at various university hospitals.

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 gone above and beyond to deliver a record-breaking fundraising year and the Trustees are very grateful for their incredible efforts.

Continuing our Investment in Medical Research in the UK and 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

Throughout 2022, our Chief Executive staged online meetings with key figures from the A-T research community and representatives from other medical research charities and patient groups to explore possible funding opportunities and further understand which areas of A-T research may provide the most promising outcomes.

Non-A-T researchers who specialise in related conditions were also contacted to drive future research projects and create greater interest in the condition. This strategy is repeated from year to year to increase the number and demographic of ‘who’ we advertise our grant rounds to.

We concluded our latest grant round in April 2022 joining forces with various like-minded charities and patient organisations to award five new research grants. These projects required a combined total investment of £765,815 and will take place at renowned research institutions and university hospitals in the United Kingdom, Italy, and Australia.

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 £3,984,715 in 46 global research projects under six main research headings categorised using the UK Clinical Research Collaboration Health Research Classification System.

Underpinning Research - Developing new tools and techniques for conducting research

Aetiology - Understanding the causes of A-T

Detection, Screening and Diagnosis - Tests for diagnosing and monitoring patients with A-T

Development of Treatments and Therapeutic Interventions - Creating drugs and therapies to alleviate the symptoms of A-T Evaluation of Treatments and Therapeutic Interventions - Studies to prove how new treatments work and understand how to use them

Management of Diseases and Conditions - Managing the symptoms of A-T

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

Total Research Spend Since 2012

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4%
1%
13%
31%
34%
17%
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Underpinning Research - £530,431.00

Aetiology - £1,363,470.00

Detection, Screening and Diagnosis - £675,388.00

[Development of Treatments and Therapeutic ] Interventions - £1,241,481.00

Evaluation of Treatments and Therapeutic Interventions - £17,656.00

Management of Diseases and Conditions - £156,288.00

The following grants were awarded by the Trustees in February 2022:

Brain-penetrating ATM gene therapy

Principal Researcher: Dr James Dixon

Institute: University of Nottingham, UK Cost: £147,304 over 24 months in partnership with the AEFAT, A-T Society and BrAshA-T Start Date: 5th of September 2022

Project Overview

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Dr James Dixon
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Dr James Dixon and team propose to combine gene therapy and editing to engineer an effective therapy to treat A-T in the brain. Their focus is to combine novel nanoparticle chemistry with state-of-the-art gene editing technology to replace faulty A-T genes and ‘molecularly cure’ any A-T mutation as a medicine for all patients. In their lab, they have demonstrated that delivering genes to A-T patient cells can correct aspects of the disease, and that their gene therapy is effective when injected into healthy mouse brains. They now aim to improve how the medicine penetrates through brain tissue. In parallel they will use the most advanced gene editing technologies to replace defective A-T genes, or to provide extra ‘active’ copies. A-T patient cells will be used to determine if their proposed treatment corrects the disease permanently. With success they will progress to deliver the therapy to brain slices and then into healthy mice. This research is in its infancy but if successful will pave the way for future trials of their technology.

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

Principal Researcher: Dr Margherita Doria (right) and Dr. Maria Giovanna Desimio Institute: Bambino Gesù Children’s Hospital, Italy Cost: £91,000 over 24 months in partnership with the A-T Society (UK), AEFAT (Spain) and BrAshA-T (Australia) Start Date: 1st of November 2022

Project Overview

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Dr. Maria Giovanna Desimio & Dr Margherita Doria
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The aim of this project is to identify alterations in blood immune cells of people with A-T that could serve as predictors of cancer development and targets of novel anti-cancer immunotherapies. By studying a small group of A-T patients, the team at the Bambino Gesù Children’s Hospital (Rome, Italy) recently identified some defects in cells of the innate immune defence against tumours and viruses that are called ‘natural killer’ (NK) cells. Specifically, A-T NK cells showed features that are typical of ‘exhausted’ cells and displayed reduced expression and function of the activating NKG2D receptor correlated with the increase of its ligands (NKG2DLs) in the plasma of patients. The expression of NKG2DLs, normally absent, is induced by tumorigenic transformation, infection and, in general, when cells undergo a ‘stress’, a condition that typically occur in A-T due to genetic defects of the ATM enzyme. The present study aims to verify

the hypothesis that persistent engagement of stress-induced NKG2DLs may result overtime in NKG2D down-regulation and, consequently, in the loss of anti-tumour and anti-viral efficacy of NK cells during A-T disease progression.

Digital drug prediction informed by genetic analysis of stem cell-derived mini-brains from A-T patients

Principal Researcher: Dr Sam Nayler

Institute: QIMR Berghofer Medical Research Institute, Queensland, Australia

Cost: £151,690 over 36 months in partnership with the A-T Society (UK), AEFAT (Spain) and BrAshA-T (Australia) Start Date: 1st of December 2022

Project Overview

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Dr Sam Nayler
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In a previous study, Dr Sam Nayler and his team performed genetic sequencing on single cells from mini-brains made from A-T patient cells. They have predicted from these data which genes are disrupted in the absence of ATM (the gene missing or not functioning completely in A-T), with a focus on key genes which could be targeted with drugs. However, further analysis is required to understand how the different cell types of the brain are affected, and as a result which drugs might elicit restorative effects, while minimizing side effects. They will now perform a much deeper analysis of this data aiming to classify the cell types at the highest resolution possible using the latest statistical advances, relevant data in the field and best-current practice. This will enable fine-grained analysis of specific cell types (i.e. astrocyte, granule, Purkinje neuron) between A-T patients and controls. The team will share these with other interested researchers. Three major pathways have been identified as being disrupted in A-T mini

brains which the team will confirm by establishing cerebellar organoid technology. They will validate these pathways using a variety of biochemical approaches which will form the basis of a testing pipeline for drugs computationally-predicted to restore these pathways. In addition to this work they will also functionally characterize neuronal activity. They will examine the contribution of an important immune cell, the microglia, which has not previously been possible.

Trial REadiness in Ataxia Telangiectasia (TREAT-AT)

Principal Researcher: Dr Rita Horvath and Dr Anke Hensiek Institute: University of Cambridge, UK

Cost: £250,000 over 36 months in partnership with the A-T Society (UK), AEFAT (Spain) and BrAshA-T (Australia) Start Date: 1st of January 2023

Project Overview

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Dr Rita Horvath and Dr Anke Hensiek
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Dr Horvath and her team have identified a particular A-T mutation (the ‘UK mutation’) that causes a condition type that may be treatable with a new genetic treatment called antisense oligonucleotide (ASO) therapy. Early phase 1 trials with a US-based patient with A-T have already begun, but the interpretation of the results has been hampered by the current inability to assess meaningful clinical improvement. One of the major limiting factors in assessing effectiveness of the ASO treatment is the lack of a clear understanding of the natural history of the condition and disease biomarkers (biological molecules found in blood, other body fluids or tissues that are indicators of the disease condition, which can be easily measured and used to monitor the disease).

This study aims to explore the progression of neurological symptoms using 10 years of existing data (tracking people with A-T) whilst gathering additional new data from people with the UK mutation. The resulting data will be used to establish optimal biomarkers for future clinical trials (there are plans for a phase 1 ASO trial here in the UK) and to further understand the natural history of A-T. The study results will allow rapid progression to trial-readiness for therapies, such as ASO, by offering better outcome measures for disease severity and progression.

Understanding and correcting glucose metabolism defects in AtaxiaTelangiectasia

Principal Researcher: Dr Vincenzo Costanzo

Institute: IFOM – The FIRC Institute of Molecular Oncology, Milan, Italy Cost: £125,821 over 36 months in partnership with the A-T Society (UK), AEFAT (Spain) and BrAshA-T (Australia) Start Date: 1st of April 2023

Project Overview

Dr Costanzo and his team will test the hypothesis that ATM controls the chemical reactions required for the correct use of glucose. Glucose usage defects could lead to glycogen accumulation, which might be toxic for brain cells. They will study the molecular reactions controlled by ATM that promote correct glucose usage and assess possible toxicity of glycogen accumulation to understand how these defects occur and how they can be corrected. The team will monitor glucose metabolism in primary AT cells directly measuring the activity of enzymes controlling key regulatory reactions in glucose processing. The team will also measure and monitor mitochondrial function to understand whether glucose usage defects are linked to mitochondrial impairments. They will also explore the impact of known enzymes involved in glycogen accumulation and AT cell survival to identify possible alterations in pathways controlling energy Dr Vincenzo Costanzo metabolism in AT cells. Finally, the team will use Purkinje neurons derived from normal and A-T human in vitro reprogrammed cells to validate the impact of the alterations linked to impaired glucose metabolism. The information resulting from this study could help Ataxia-Telangiectasia managing clinicians to better understand how to treat the disease.

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 Aim

Through our award-winning research process, we aim to only fund projects of the highest-quality that have the greatest chance of advancing our understanding of A-T, improving treatment and management, and accelerating benefits to patients.

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. 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 Research Advisory Committee 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 Research Advisory Committee (RAC) 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. The RAC reviewed all the applications received in our 2022 grant round and their funding recommendations were passed on to the Trustees for consideration. All five of their recommended projects were approved by the trustees and the grants were awarded in May 2022.

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 Research Advisory Committee 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.

The following studies concluded in 2022 and the initial project outcomes are as follows:

Non-viral gene therapy for Ataxia Telangiectasia

Principal researchers: Dr James Dixon Institute: University of Nottingham Cost: £105,183 over 36 months * Project Completion Date: June 2022

Project Overview

Gene therapy is a method to replace faulty genes with new copies. This is not readily applicable to the treatment of A-T due to the disease gene (ATM) being too large to deliver by the most developed systems using viruses. There are non-viral systems based on nanoparticles that can deliver such large genes, but they are generally poor and the benefit does not last, meaning that gene therapy to molecularly cure A-T will be a very difficult task. This is even more so since the primary tissue for treatment is the brain (Cerebellum) which is difficult to reach even with the most effective systems.

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Dr James Dixon
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The team developed a new platform of nanoparticles that can deliver engineered ATM genes to cells in the laboratory. The main aim of this project was to test if this therapy is effective enough in A-T patient cells to correct the sensitivity to radiation caused by the lack of the ATM protein. Also to test the system using mouse models and determine if their system can express genes in the correct part of the brain safely and effectively.

Project Outcome

Dr. Dixon and his team have shown that ATM gene engineering is possible, and this can be effectively delivered to A-T patient cells in the laboratory and show positive effects on restoring the normal function of the ATM gene in helping repair DNA after damage. The demonstration that genes can be delivered and expressed in mice brains also confirms the possibility that this approach should be further explored as a potential future therapy.

Publications

A paper is in preparation and will be submitted for publication at a later date.

*This study was funded in partnership and managed by the A-T Children’s Project in the USA

Natural History of Ataxia-Telangiectasia (N-HAT)

Principal Researcher: Dr William Whitehouse & Dr Emily Petley Institute: University of Nottingham *Project Completion Date: August 2022

Project Overview

Dr William Whitehouse, along with Dr Emily Petley and professionals from the two UK national A-T clinics, aimed to document the natural history of A-T as the NHS set-up in the UK provided a unique opportunity to do such a study. Dr Petley reviewed the clinical notes of everyone with A-T seen in the adult and paediatric A-T clinics since 2001, extracting data on infections; immune deficiencies; cancers; lung disease; brain and nervous system disorders; growth; nutritional status; mortality; and genetics. The data was statistically analysed to determine links between signs and symptoms and describe how A-T progresses.

Project Outcome

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Dr Emily Petley & Dr William Whitehouse
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The project has documented the pattern of disease of ataxiatelangiectasia (A-T) in 173 people. The outcome has determined at what age manifestations of the disease occur in the UK A-T population, and how common each manifestation of the disease is. This will help doctors and healthcare professionals pre-empt complications of the condition, so that they can aim to treat them early. It is hoped that this will result in a better outcome for people with A-T, for example detecting cancer earlier. This study will also find links between manifestations of the condition. This study has raised questions and theories that clinicians are currently unable to answer without further research. However, raising these questions and theories will enable further research to be carried out, potentially finding treatments or in the long term a cure for the condition. By understanding the condition

in more detail, the team behind the study hope to help people with A-T and their families to have a greater understanding of what to expect at what age. This will help them to plan their future, for example education, housing, and careers.

Most of the aims of this project were met successfully. COVID-19 did have an impact on meeting with families and the development of focus groups. A plan to approach this in 2023 has been made.

Publications

Petley E, Yule A, Alexander S, Ojha S, Whitehouse WP. The natural history of ataxia-telangiectasia (A-T): A systematic review. PLoS One. 2022 Mar 15;17(3):e0264177. doi: 10.1371/journal.pone.0264177. PMID: 35290391; PMCID: PMC9049793.

The team are currently preparing manuscript of descriptive data on natural history of ataxia-telangiectasia.

*This study was managed by Action for A-T and funded in partnership with the A-T Society and BrAshA-T

A-T cerebellar neurodegeneration and inositol phosphate signalling

Principal Researcher: Professor Tanya Paull Institute: The University of Texas at Austin, USA Project Completion Date: September 2022

Project Overview

This proposal was based on a previous finding from the Paull laboratory that the cerebellum obtained from deceased A-T individuals has reduced levels of expression of proteins that are involved in calcium signalling, which is known to be important for cerebellar function. One goal of this proposal was to examine whether this was also observed at the mRNA level (that is the transcript level), with mRNA being the cellular molecule used to make proteins. This would help to provide insight into the basis underlying such changes. A second goal was to examine how loss of ATM affects calcium signalling using human neurons in culture.

Project Outcome

The findings of this study demonstrate that ATM has a unique role in the cerebellum and are consistent with the notion that loss of ATM affects the expression of genes that are critical for cerebella function. They suggest that oxidative damage may have an Professor Tanya Paull additive impact on impairing ATM function in the cerebellum. Although further studies

are required to gain insight into the precise mechanism, they suggest that agents that prevent oxidation-induced DNA damage have the potential to diminish the impact of ATM loss. They provide important insight into the unique or special function of ATM in the cerebellum, which, if clearly understood, could help target treatment.

Publications

The research team are currently writing up these results into a manuscript.

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

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 endeavor to raise funds from a variety of activities which appeal to new and existing supporters. Since 2012 we have invested £3,984,715 in 46 A-T related research projects around the world, and this has only been possible thanks to our generous supporters.

Our Performance

2022 was our most successful fundraising year to date as we were able to take full advantage of the relaxation of all Covid restrictions and were able to deliver our full portfolio of fundraising activities. Nearly all our activities performed better than expected as our event guests were incredibly generous, and we were able to deliver several new fundraising activities including a high-profile construction industry ball and a large-scale sponsored walk. We also benefitted from a UKRI grant to help retain early years researchers in their roles plus a sizeable legacy donation.

Our investment in Virgin London Marathon places proved successful once again allowing us to make a 360% return. 22 people were initially recruited for the event, four of these withdrew due to injury or other health concerns, but between them they raised £45,691. We have 20 places available for the 2023 London Marathon and hope to achieve a similar strong fundraising outcome.

In line with our fundraising strategy and as a direct result of the easing of pandemic restrictions, we quickly increased our events offering to take advantage of the heightened demand from our supporters. We also diversified our other fundraising activities to ensure that we were not solely dependent on any one source of funding. The lack of any pandemic restrictions meant that Challenge and Social events recovered well from the previous year, accounting for 59% of our income (2021 - 51%). Whilst other fundraising initiatives, such as donations, funding partnerships and trust and foundation applications decreased to 28% (2021 - 40%). The remaining 13% (£121,000) was generated from the Medical Research Council grant to help retain early years researchers. A few notable fundraising activities took place throughout the year including a large-scale marathon walk with wine tasting, a golf event in partnership with Stewart Golf Ltd and a fundraising dinner for various stakeholders within the construction industry sponsored by Sheppard Piling. We are especially grateful to the staff and clients of BCA and Cinch yet again for taking part in the three-day South Coast cycle event which raised £109,000 plus the non-riders who raised an additional £24,500 on the marathon walk. We are also indebted to the students of Quest Professional who raised over £34,000 at their fundraising dinner. In addition, we would like to thank Simon Toon and his friends for their ongoing and valued support and the late Margaret Claire Seccombe and her sister Monica for their generous legacy and donations totaling £40,000.

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. No complaints relating to our fundraising activities were logged with the Fundraising Regulator throughout the year.

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 2022 and only carried out public fundraising when we considered it safe to do so. We also continued to speak to more supporters to make sure our high standards were maintained as we returned to normal activities following the pandemic.

The pie chart below shows the percentage splits of each of our areas of fundraising in 2022.

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1% [0%]
12%
21%
3%
25%
38%
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[Donations]

[Gift Aid Claims]

[Fundraising]

[Fundraising Events]

[Challenge Events]

[Bank Interest]

[Other]

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 38). We are always keen to work with other trusts, foundations and corporate funders who might be interested in supporting our work.

At the time of writing these accounts, the COVID-19 pandemic continues to impact the way in which every organisation operates around the world and new variants bring further uncertainty as they are discovered. As a result, we are constantly having to adapt and are less able to plan future fundraising activities with any certainty. The vaccination programme has allowed us to return to near normal, enabling us to stage and benefit from many of our planned activities. But as new COVID variants are discovered which may evade the protection of the vaccines it is hard to predict the potential impact that the ongoing pandemic will have on our overall income. We will continue to adapt to the ever-changing situation and further diversify our fundraising activities as well as staying mindful of our costs to ensure that there are no going concern issues.

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.

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 charities and patient organisations throughout 2022 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 co-funding partners in 2022 were as follows:

The UK based Children’s Medical Research Charity Sparks

Action for A-T continued to work closely with UK Children’s Medical Research Charity Sparks which joined forces with Great Ormond Street Hospital Charity as a subsidiary in February 2017. Sparks are currently managing the following jointly funded research project which is due to end in 2023:

“Optimising lung imaging in people with A-T” - Dr Peter Merkus at the Radboud University Medical Centre, Netherlands

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. A joint grant call was launched at the start of 2022 to increase the investment in new A-T research and 13 funding applications were received and peer reviewed by Action for A-T. Upon completion of the grant round in May 2022, the two charities combined their resources to fund five new research studies. BrAshA-T contributed £150,000 towards the £765,815 total cost of all five projects. The first payment of £74,915 was made in October 2022 and the remaining payment will be made towards the end of 2023. The total funds committed by BrAshA-T will be split equally amongst each of the five projects which will be managed in full by Action for A-T.

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. Upon completion of the grant round in May 2022, the two charities combined their resources to fund five new research studies. The A-T Society agreed to contribute £60,000 towards all five of the studies and a funding agreement was put in place whereby two payments of £30,000 each will be made in 2023 and 2024. The total funds committed by the A-T Society will be split equally amongst each of the five projects which will be managed in full by Action for A-T.

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

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. Upon completion of the grant round in May 2022, the two charities combined their resources to fund five new research studies. AEFAT agreed to contribute €50,000 towards all five of the new research studies and a funding agreement was put in place. The first payment of €25,000 was made in September 2022 and the remaining payment will be made around the same time in 2023. The total funds committed by AEFAT will be split equally amongst each of the five projects which will be managed in full by Action for A-T.

The MRC Nucleic Acid Therapy Accelerator (NATA)

A joint funding partnership was established with NATA in October 2022 to fund a joint Fellowship. The purpose of the 2-year Fellowship is to drive high quality research in the application and translation of nucleic acid therapies in A-T and each organisation will contribute £125,000 towards the full £250,000 cost.

Action for A-T will manage the application process in full and joint funds from NATA and Action for A-T will be made available for projects focusing on nucleic acid therapies (NATs) for the management or treatment of A-T. NATA will assist Action for A-T with the promotion of the Fellowship opportunity and applications will be received and managed by Action for A-T. The peer review process will be managed through the Action for A-T system. Representatives from NATA will join the Action For A-T Scientific Advisory Panel to review the applications, interview the candidates and assist with the peer review of the relevant projects. The final fellowship award will be made in late 2023.

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

Working strategically with the worldwide A-T community

Recognising the need for the global A-T community to work more closely together, Action for A-T played a key role in establishing the Global A-T Alliance at the start of 2021. The Alliance is made up of charities and patient groups from the UK, USA, Spain, France, Italy 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 joint funded new research, met with a number of pharma companies to explore new treatment opportunities, delivered research focussed webinars for A-T families 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 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 represented Action for A-T in a promotional video for the “Big Give” campaign. The film was used to recruit potential campaign donors for Action for A-T and other charities and was shared widely online and via various social media platforms. We received £15,700 from STV in March 2022 due to Naga Munchetty taking part in the celebrity edition of the TV gameshow “Catchphrase” and Naga also hosted our “Spotlight on A-T Research” webinar alongside Dr Mark Toms. Several other celebrities including Chris Sheasby, Leon Haslam, Kevin Whately, Simon Shaw, Colin Charvis and Jeremy Guscott helped generate funds, awareness and support by taking part in events and campaigns or starring in promotional social media videos.

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 2022, most in-person conferences and meetings were cancelled due to the pandemic, but researchers funded by Action for A-T were able to present their findings at various webinars and online events. These presentations showcased our latest projects and provided the wider A-T community with a comprehensive view of the progress made to date.

“Spotlight on A-T Research” Webinar

Action for A-T staged the second “Spotlight on A-T” virtual event in conjunction with the A-T Alliance to showcase some of the current A-T research projects which are taking place around the world. Key stakeholders from the global A-T community provided an easy to understand, concise overview of their current projects as well as answering audience questions. The webinar took place on the 7th of March 2022 and was hosted by Broadcaster, Journalist and Action for A-T Patron, Naga Munchetty and chair of the Research Advisory Committee, Dr Mark Toms.

There were six presentations broadcast live in English from various research teams and over 150 families, clinicians and other stakeholders tuned in to the event. The webinar was very popular and will be repeated in 2023 in conjunction with the A-T Alliance members.

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.

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 monthly 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 2023 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.

Our Future Plans: Areas Of Focus For 2023

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 2023 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 enabled us to adapt quickly to the ever-changing environment in 2022 but as we continue to operate in tumultuous conditions, we will:

Review and prioritise projects based on available resources whilst seeking out new opportunities to raise funds in a safe and sustainable manner
Invest in the necessary skills, tools and resources to meet our organisation wide objectives
Continue to review and refine all of our systems to meet the demands of the charity
Explore new and enhance/review existing fundraising initiatives to ensure the maximum return on investment
Keep up to date with current trends and remain flexible so that change can be implemented quickly if required

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. If funds will allow, we plan to call for new research applications towards the end of 2023.

We will maintain our close relationship with the Association of Medical Research Charities (AMRC) and work in conjunction with our research advisory committee (RAC) to develop and improve our peer review process and ensure that the research we fund is of the highest quality. This will include constant evaluation of our systems and processes as well as enlisting the help and support of various A-T experts around the globe.

Membership of the RAC will be continually reviewed to ensure that we have a broad range of scientific expertise in areas relating to A-T as well as lay representation from various A-T families as Action for A-T strongly supports public and patient engagement in its research processes.

Invest in People as well as Projects

The A-T research community is relatively small in comparison to other disease areas and a pipeline of new talent is required to build on the existing research findings. Throughout 2023, we will provide several funding opportunities to encourage new and existing researchers to take an interest in A-T. This funding will be in addition to our project grant round and will include a “sandbox” event which will provide in depth information about the condition and an opportunity to apply for small pump priming grants to kick start future large scale projects. We will also be staging our first Fellowship grant round in collaboration with the MRC Nucleic Acid Therapy Accelerator (NATA) to drive high quality research in the application and translation of nucleic acid therapies in A-T.

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 also 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 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 2023. These projects will include maximising celebrity endorsement opportunities, the creation of a new promotional film and delivering another family focussed A-T research webinar in conjunction with the A-T Alliance.

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.

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.

Research Advisory Committee

The Research Advisory Committee (RAC) is chaired by a member of the Board of Trustees. Members of the RAC have a broad range of scientific expertise in areas relating to A-T but are not generally active researchers in the field of A-T to minimise bias and conflicts of interest. 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 RAC for providing expert guidance and advice on a pro bono basis.

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.

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.

It is recognised that internal controls can only provide reasonable but not absolute assurance that major risks have been adequately managed. In the opinion of the Trustees the key risks are:

The loss of reputation due to error, or fraud.
The loss of income due to error, or fraud.
Insufficient numbers of Trustees to allow the Charity to continue.
Insufficient funds to allow the Charity to meet its objectives.
Excessive reserves without justification deterring future donors and fundraisers.

In the opinion of the Trustees the policies and procedures are currently adequate to mitigate financial and reputation loss due to error or fraud whilst maintaining a viable future financially.

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. £90,000) 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.

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 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.

Pay and Remuneration of Key Management Personnel

The Trustee’s 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 appropriate remuneration committee. 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.

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 2022 was £949,804 (2021 - £593,451).

Charitable Expenditure

The cost spent on Charitable Activities Was £1,106,145 (2021 - £440,191) of which £804,239 (2021 – £262,572) was for grants provided for funding of research projects.

The cost of generating voluntary income was £81,134 (2021 - £82,281) whilst the cost of generating income from charitable events was £201,167 (2021 - £76,057)

Governance costs of £19,605 (2021 - £19,281) 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 2021. In 2022, £nil of funds were passed on to the research projects detailed in note 8 on page 37.

As at 31 December 2022 designated funds carried forward are £nil.

Restricted Funds

Restricted funds of £65,326 were brought forward from 2021. During the year £20,160 of restricted income was received against projects funded during 2022. During 2022, £nil of funding was made to the research projects detailed in note 8 Page 37.

At 31 December 2022 restricted funds of £85,486 (2021 - £65,326) 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.

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:

Select suitable accounting policies and then apply them consistently;
Observe the methods and principles in the Charities SORP 2015 (FRS 102);
Make judgements and estimates that are reasonable and prudent;
State whether applicable accounting standards have been followed, subject to any material departures disclosed and
explained in the financial statements;
Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the Charity will continue in operation.

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.

The Trustees declare that they have approved the Trustees report included in the previous pages

Signed on behalf of the charity’s Trustees

Toby Read (Chairman)

William Rowberry (Treasurer)

Dated: 25th April 2023

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 2022 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:

give a true and fair view of the state of the charity’s affairs as at 31 December 2022 and of its incoming resources and application of resources, for the year then ended;
have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
have been prepared in accordance with the requirements of the Charities Act 2011.

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:

the information given in the Report of the Trustees is inconsistent in any material respect with the financial statements; or
sufficient accounting records have not been kept; or
the financial statements are not in agreement with the accounting records and returns; or
we have not received all the information and explanations we require for our audit.

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.

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

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.
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.
Evaluate the appropriateness of accounting policies used and the reasonableness of accounting estimates and related disclosures made by the trustees.
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. However, future events or conditions may cause the charity to cease to continue as a going concern.
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.

(Continued)

A & N (Haslemere) Limited Statutory Auditor Aruna House 2 Kings Road Haslemere Surrey GU27 2QA

Dated: 25th April 2023

A & N (Haslemere) Limited is eligible to act as an auditor in terms of section 1212 of the Companies Act 2006.

Statement Of Financial Activities

for the year ended 31 December 2022

Notes Income and Endowments from Donations and legacies 3 Charitable Activities 5 Fundraising & challenge events Investment income 4 Other income Total Expenditure on Raising funds 6 Charitable Activities 7 Fundraising & challenge events Grants 8 Governance costs Total Net Income / (Expenditure) Reconciliation of Funds Total funds brought forward Total Funds Carried Forward	Unrestricted Funds £ Restricted Funds £ 31.12.22 Total Funds £ 31.12.21 Total Funds £
	357,010 20,160 377,170 234,149 559,411 - 559,411 305,409 10,043 - 10,043 11,452 3,180 - 3,180 42,441
	929,644 20,160 949,804 593,451 81,134 - 81,134 82,281 201,167 - 201,167 76,057 804,239 - 804,239 262,572 19,605 - 19,605 19,281
	1,106,145 1,106,145 440,191
	(176,501) 20,160 (156,341) 153,260 317,819 65,326 383,145 229,885
	141,318 85,486 226,804 383,145

The notes form part of these financial statements

Statement Of Financial Position

for the year ended 31 December 2022

Notes Fixed Assets Tangible assets 17 Current Assets Stocks 18 Debtors 19 Cash at bank 20 Creditors Amounts falling due within one year 21 Net Current Assets Total Assets Less Current Liabilities Creditors Amounts falling due after more than one year 22 Net Assets Funds 23 Unrestricted funds Restricted funds Total Funds	Unrestricted Funds £ Restricted Funds £	31.12.22 Total Funds £ 31.12.21 Total Funds £
	216 - 7,750 - 18,469 - 1,541,481 85,486	216 324 7,750 9,532 18,469 37,139 1,626,967 1,371,740
	1,567,700 85,486 (491,139) - 1,076,561 85,486	1,653,186 1,418,411 (491,139) (448,986) 1,162,047 969,425
	1,076,777 85,486 (935,459) -	1,162,263 969,749 (935,459) (586,604)
	141,318 85,486	226,804 383,145
		141,318 317,819 85,486 65,326
		226,804 383,145

The notes form part of these financial statements

The Trustees declare that they have approved the financial statements.

Signed on behalf of the charity’s Trustees.

Toby Read (Chairman)

Dated: 25th April 2023

William Rowberry (Treasurer) Dated: 25th April 2023

Statement of Cash Flows

Statement of Cash Flows
for the year ended 31 December 2022 Notes Cash fows from operating activities: 1 Cash generated from operations Net cash provided by operating activities Cash fows from investing activities: Purchase of tangible fxed assets Interest received Net cash provided by investing activities 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	31.12.22 £ 31.12.21 £
	254,184 (137,316)
	254,184 (137,316)
	- - 10,043 11,452
	10,043 11,452
	255,227 (125,864) 1,371,740 1,497,604
	1,626,967 1,371,740

Notes to the Statement of Cash Flows

for the Year Ended 31 December 2022

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

Net (expenditure)/income for the reporting period (as per the Statement of Financial Activities) Adjustments for: Depreciation charges Interest received (Increase)/decrease in stocks Decrease in debtors Increase/(decrease) in creditors Net cash provided by operations 2. Analysis of changes in net fund At 1.1.22 £ Net cash Cash at bank 1,371,740 1,371,740 Total 1,371,740	Net (expenditure)/income for the reporting period (as per the Statement of Financial Activities) Adjustments for: Depreciation charges Interest received (Increase)/decrease in stocks Decrease in debtors Increase/(decrease) in creditors Net cash provided by operations 2. Analysis of changes in net fund At 1.1.22 £ Net cash Cash at bank 1,371,740 1,371,740 Total 1,371,740	31.12.22 £ 31.12.21 £
		(156,341) 153,260 108 - (10,043) (11,452) 1,782 (4,719) 18,670 14,710 391,008 (298,553)
		245,184 (137,316)
		Cash Flow £ 31.12.22 £ 255,227 1,626,967
	1,371,740	255,227 1,626,967
	1,371,740	255,227 1,626,967

Analysis of changes in net fund

Notes to the Financial Statements

for the Year Ended 31 December 2022

1. Accounting Policies

Basis of preparation of 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.

Notes to the Financial Statements

for the Year Ended 31 December 2022

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 slow moving items.

Taxation

The charity is exempt from tax on its charitable activities.

Fund accounting

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 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.

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.

Notes to the Financial Statements

for the Year Ended 31 December 2022

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.

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 17 discloses the carrying value if the tangible fixed assets and the depreciation policy is listed above in accounting policies.

3. Donations and Legacies

Donations Gift Aid Fundraising 4. Investment Income Bank interest	Unrestricted Funds £ Restricted Funds £ 31.12.22 £ 31.12.21 £
	87,743 20,160 107,903 196,586 31,768 - 31,768 12,163 237,499 - 237,499 25,400
	357,010 20,160 377,170 234,149
	Unrestricted Funds £ Restricted Funds £ 31.12.22 £ 31.12.21 £
	10,043 - 10,043 11,452

4. Investment Income

5. Income from Charitable Activities

			31.12.22	31.12.21
	Activity		£	£
Fundraising events	Fundraising & Challenge events		358,874	106,007
Challenge events	Fundraising & Challenge events		200,537	199,402
			559,411	305,409
6. Raising Funds
	Unrestricted	Restricted	31.12.22	31.12.21
	Funds	Funds	£	£
	£	£
Raising donations and	legacies
Staff costs	61,071	-	61,071	59,786
Support costs	20,063	-	20,063	22,495
	81,134	-	81,134	82,281

6. Raising Funds

7. Charitable Activities Costs

Fundraising & challenge events Grants Governance costs 8. Grants Payable Grants	Direct Costs £ Grant funding of activities (see note 8) £	Support Costs (see note 9) £ Totals £
	181,101 - - 743,455 - -	20,066 201,167 60,784 804,239 19,605 19,605
	181,101 743,455	100,455 1,025,011
		31.12.22 £ 31.12.21 £ 743,455 207,960

8. Grants Payable

The total grants paid to institutions during the year was as follows:

University of Nottingham, UK - Brain-penetrating ATM gene therapy Bambino Gesù Children’s Hospital, Italy - Study of natural killer cells in A-T pathogenesis and their therapeutic implications QIMR Berghofer Medical Research Institute, Queensland, Australia - Digital drug prediction informed by genetic analysis of stem cell-derived mini-brains from A-T patients University of Cambridge, UK - Trial REadiness in Ataxia Telangiectasia (TREAT-AT) IFOM – The FIRC Institute of Molecular Oncology, Milan, Italy - Understanding and correcting glucose metabolism defects in Ataxia-Telangiectasia Nottingham University Hospital, UK – (Research project underspends refunded) Natural History of A-T University of Texas, USA - A-T cerebellar neurodegeneration and inositol phosphate signalling Duke University, USA - A new function for ATM and a new theory for the clinical abnormalities in A-T University of Birmingham, UK - (Research project underspends refunded) Identifying new therapies for blood cancers in patients with A-T Nottingham University Hospital, UK - (Research project underspends refunded) longitudinal brain changes in childhood A-T Imagin Institute Paris, France - (Research project underspends refunded) - Does irregular repair of DNA damage in Neurons and Lymphocytes cause cellular degeneration in A-T patients? Oxford University, UK - (Research project underspends refunded) - The use of patient stem cell-derived mini-brains to study A-T	31.12.22 £ 31.12.21 £
	147,304 - 91,000 - 151,690 - 250,000 - 125,821 - (22,360) - - 22,519 - 249,854 - (33,437) - (7,124) - (7,371) - (16,481)
	743,455 207,960

University of Nottingham, UK - Brain-penetrating ATM gene therapy
Bambino Gesù Children’s Hospital, Italy - Study of natural killer cells in A-T
pathogenesis and their therapeutic implications
QIMR Berghofer Medical Research Institute, Queensland, Australia - Digital drug
prediction informed by genetic analysis of stem cell-derived mini-brains from A-T
patients
University of Cambridge, UK - Trial REadiness in Ataxia Telangiectasia (TREAT-AT)
IFOM – The FIRC Institute of Molecular Oncology, Milan, Italy - Understanding
and correcting glucose metabolism defects in Ataxia-Telangiectasia
Nottingham University Hospital, UK – (Research project underspends refunded)
Natural History of A-T
University of Texas, USA - A-T cerebellar neurodegeneration and inositol
phosphate signalling
Duke University, USA - A new function for ATM and a new theory for the clinical
abnormalities in A-T
University of Birmingham, UK - (Research project underspends refunded)
Identifying new therapies for blood cancers in patients with A-T
Nottingham University Hospital, UK - (Research project underspends refunded)
longitudinal brain changes in childhood A-T
Imagin Institute Paris, France - (Research project underspends refunded) - Does
irregular repair of DNA damage in Neurons and Lymphocytes cause cellular
degeneration in A-T patients?
Oxford University, UK - (Research project underspends refunded) - The use of
patient stem cell-derived mini-brains to study A-T

31.12.22
£
31.12.21
£

147,304
-
91,000
-
151,690
-
250,000
-
125,821
-
(22,360)
-
-
22,519
-
249,854
-
(33,437)
-
(7,124)
-
(7,371)
-
(16,481)

743,455
207,960

9. Support Costs

Raising donations and legacies Fundraising & challenge events Grants Governance costs	Management £ Finance £ Information Technology £ Other £ Wages £ Governance Costs £ Totals £
	7,620 732 2,710 9,011 - - 20,063 7,621 733 2,710 9,002 - - 20,066 - - - - 60,784 - 60,784 - - - - - 19,605 19,605
	15,241 1,465 5,420 18,033 60,784 19,605 120,518

Activity Basis of allocation

Management 90 % Raising Donation & legacies 10 % Fundraising & Challenge Events Finance 90 % Raising Donation & legacies 10 % Fundraising & Challenge Events Information technology 90 % Raising Donation & legacies 10 % Fundraising & Challenge Events Human resources 90 % Raising Donation & legacies 10 % Fundraising & Challenge Events Other 90 % Raising Donation & legacies 10 % Fundraising & Challenge Events Governance costs 100% Governance cost

10. Trustees’ Remuneration And Benefits

There were no Trustees’ remuneration or other benefits for the year ended 31 December 2022 nor for the year ended 31 December 2021.

Trustees’ Expenses

There were no Trustees’ expenses paid for the year ended 31 December 2022 nor for the year ended 31 December 2021.

11. Staff Costs

Only one employee received emoluments in excess of £60,000.

The Charity considers its key management personnel to be the Trustees, Chief Executive and senior management. The total employment benefits of the key management personnel were £147,225 (2021 - £124,481). Only one employee had employment benefits falling between £65,000 and £70,000 (2021 - 1).

12. Comparatives for the Statement of Financial Activities

Income and endowments from Donations and legacies Charitable activities Fundraising & challenge events Investment income Other income Total Expenditure on Raising funds Charitable activities Fundraising & challenge events Grants Governance costs Total Net income/(Expenditure) Reconciliation of funds Total funds brought forward TOTAL FUNDS CARRIED FORWARD	Unrestricted Funds £ Restricted Funds £ Total Funds £ 168,823 65,326 234,149 305,409 - 305,409 11,452 - 11,452 42,441 - 42,441
	528,125 65,326 593,451
	Unrestricted Funds £ Restricted Funds £ Total Funds £ 82,281 - 82,281 76,057 - 76,057 220,110 42,462 262,572 19,281 - 19,281
	397,729 42,462 440.191 130,396 22,864 153,260 187,423 42,462 229,885
	317,819 65,326 383,145

13. 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.

14. Pension Costs

The pension costs charged in the financial statements represent the contributions payable by the Charity during the year to a multi-employer defined benefit pension scheme.

Notes to the Financial Statements - continued

for the Year Ended 31 December 2022

15. 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.

16. 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.

17. Tangible Fixed Assets

Cost At 1 January 2022 and 31 December 2022 Depreciation At 1 January 2022 and 31 December 2022 Charge for year At 31 December 2022 Net Book Value At 31 December 2022 At 31 December 2021 18. Stocks Stocks	31.12.22 £	Computer Equipment £ 2,358
		2,034 108
		2,142
		216
		324
		31.12.21 £
	7,750	9,532

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.

Notes to the Financial Statements - continued

for the Year Ended 31 December 2022

19. Debtors: Amounts Falling Due Within One Year

Deposit Prepayments and accrued income	31.12.22 £ 31.12.21 £
	925 925 17,544 36,214
	18,469 37,139

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

20. Cash at Bank

Bank Current Accounts Bank Current Accounts (US $) Reserve Account Investment Accounts Total	Unrestricted Funds £ Restricted Funds £ 4,924 20,160 - - 226,618 65,326 1,309,939 -	31.12.22 Total Funds £ 31.12.21 Total Funds £
		25,084 44,804 - 14,374 291,944 435,940 1,309,939 876,622
	1,541,481 85,486	1,626,967 1,371,740

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.

21. Creditors: Amounts Falling Due Within One Year

Grant Payable Accruals and deferred income

31.12.22	31.12.21
£	£
489,475	438,757
1,664	10,229
491,139	448,986

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

Other creditors	31.12.22 £ 31.12.21 £
	935,459 586,604

23. Leasing Agreements

During the next twelve months the Charity has operating lease commitments totalling £12,485 (2021 - £12,442) for contracts expiring in more than one year. The total future commitments are £12,960 (2021 - £12,442)

24. Movement in Funds

Unrestricted Funds Unrestricted Funds Restricted Funds Restricted Funds Total Funds	At 1.1.22 £ Net Movement in Funds At 31.12.22 £
	317,819 (176,501) 141,318
	65,326 20,160 85,486
	383,145 (156,341) 226,804

Net movement in funds, included in the above are as follows

Unrestricted Funds Unrestricted Funds Restricted Funds Restricted Funds Total Funds	Incoming Resources £ Resources Expended £ Movement in Funds £
	929,644 (1,106,145) (176,501) 20,160 - 20,160
	949,804 (1,106,145) (156,341)

Comparatives for movement in funds

Unrestricted Funds Unrestricted Funds Restricted Funds Total Funds	At 1.1.21 £ Net Movement in Funds At 31.12.21 £
	187,423 130,396 317,819 42,462 22,864 65,326 229,885 153,260 383,145

Notes to the Financial Statements - continued

for the Year Ended 31 December 2022

24. Movement in Funds - Continued

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

Unrestricted Funds Unrestricted Funds Restricted Funds Restricted Funds Total Funds	Incoming Resources £ Resources Expended £ Movement in Funds £
	528,125 (397,729) 130,396 65,326 (42,462) 22,864
	593,451 (440,191) 153,260

A current year 12 months and prior year 12 months combined position is as follows:

Unrestricted Funds Unrestricted Funds Restricted Funds Restricted Funds Total Funds	At 1.1.21 £ Net Movement in Funds At 31.12.22 £
	187,423 (46,105) 141,318 42,462 43,024 85,486
	229,885 (3,081) 226,804

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 Funds Restricted Funds Restricted Funds Total Funds	Incoming Resources £ Resources Expended £ Movement in Funds £
	1,457,769 (1,503,874) (46,105) 85,486 (42,462) 43,024
	1,543,255 (1,546,336) (3,081)

25. Related Party Disclosures

The Trustees all give freely their time and expertise without any form of remuneration or other benefits in cash or kind (2021 - £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.

26. Ultimate Controlling Party

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

Detailed Statement of Financial Activities

for the Year Ended 31 December 2022

Income and Endowments Donations and legacies Donations Gift aid Fundraising Investment income Bank interest Charitable activities Fundraising events Challenge events Other income Other income HMRC JRS Grant Exchange rate difference Total incoming resources Expenditure Raising donations and legacies Wages Charitable activities Event campaign costs Grants to institutions Support costs Management Wages Finance Bank charges Information technology Repairs and renewals	Unrestricted Funds £ Restricted Funds £ 31.12.22 £ 31.12.21 £
	87,743 20,160 107,903 196,586 31,786 - 31,768 12,163 237,499 - 237,499 25,400
	357,010 20,160 377,170 234,149 10,043 - 10,043 11,452 358,874 - 358,874 106,007 200,537 - 200,537 199,402
	559,411 - 559,411 305,409 - - - 4,000 - - - 38,441 3,180 3,180
	3,180 - 3,180 42,441
	929,644 20,160 949,804 593,451 61,071 - 61,071 59,786 181,101 - 181,101 56,234 743,455 - 743,455 207,960 924,556 - 924,556 264,194 15,241 - 15,241 14,817 1,465 - 1,465 2,036 5,420 - 5,420 2,945

Detailed Statement of Financial Activities

for the Year Ended 31 December 2022

Other Rent, rates and water Insurance Telephone Postage and stationery Sundries Advertising Subscription Donation collection fees Fundraising Wages Governance costs Wages Auditors’ remuneration Accountancy and legal fees Computer equipment Total resources expended Net (expenditure)/income	Unrestricted Funds £ Restricted Funds £ 31.12.22 £ 31.12.21 £
	12,485 - 12,485 14,853 1,066 - 1,066 1,036 849 - 849 736 461 - 461 312 813 - 813 1,746 956 - 956 998 474 - 474 512 899 - 899 899
	18,003 - 18,003 21,092 14,015 - 14,015 55,720 14,015 - 14,015 13,969 3,300 - 3,300 3,300 2,182 - 2,182 2,322 108 - 108 -
	19,605 - 19,605 19,601
	1,106,145 - 1,106,145 440,191
	(176,501) 20,160 (156,341) 153,260

Acknowledgments

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 2022:

Our Research Partners

BrAshA-T Ataxia Telangiectasia and their trustees

A-T Children’s Project (USA) and their Medical Research Team

Ataxia Telangiectasia Society

AEFAT

Great Ormond Street Hospital Charity

NATA

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 for their generous support.

Barton Comms Rawson Digital BCA Rest-Harrow Trust Big Give Robin Hewison Blyth Watson Charitable Trust Sheppard Piling Broyst Foundation Sir Roger Manwoods School Cast Media Sir Samuel Scott of Yews Trust Charity Escapes Stewart Golf Ltd Cinch Tonbridge School Claws Consultants Trak Employment Solutions Clarion Golf Waitrose Constellation Group Weatherall Foundation Trust Epsom Rotary Club Woodcock Brothers Eveson Charitable Trust Global Entertainment Henrik Bergrem Hospital Saturday Fund A & N Chartered Accountants International Racing Club Akin Gump Medical Research Council Chris Stanton Michael and Anna Wix Charitable Trust Gecko Graphic Design Mollie’s Miracle Team Monica Seccombe Openwork Foundation PIB Community Trust Quest Professional

Corporate or professional services provided by:

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.

Action for A-T, Aruna House, 2 Kings Road, Haslemere, Surrey GU27 2QA. 01428 853313 | info@actionforAT.org | www.actionforAT.org Registered Charity number: 1145303