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2022-12-31-accounts

The Ataxia Telangiectasia Society HeaderTrustees’ Report and Accounts 2022

Welcome to the Ataxia Telangiectasia (AT) Society.

We are a small, national charity supporting children, adults and their families whose lives have been shattered by a diagnosis of AT, a rare, degenerative, life-limiting condition for which there is no cure or treatment. Our purpose is to improve the quality of life and quality of care for people living with AT while actively promoting research to improve treatments and ultimately bring about a cure. We are the only charity in the UK providing specialist practical and therapeutic support for people affected by AT.

“Our greatest strength has been our network of fantastic supporters; fundraisers, donors, medics, scientists, and families affected by AT.”

Mike Detsiny Chair of Trustees

Chair of Trustees’ statement

For most people, 2022 was another extremely challenging year. On top of COVID, which continued to impact the lives of everyone in the UK in all sorts of ways, most households also experienced financial pressure from unprecedented price increases and rising inflation. Sadly, people affected by ataxia telangiectasia, were disproportionately adversely affected by this turbulence.

The higher cost of specialist equipment, use of everyday essentials and energy, all made it harder for AT households to meet the extra cost of disability. Added to these tensions, the increasing pressures on NHS mental health teams, have made it considerably harder for people affected by AT to gain access to services even though living with a rare disease substantially impacts mental health.*

At the same time, we also faced another year of risks to income as the economic crisis impacted on donors' giving capacity, and our own costs increased. Whilst we had some terrific fundraising success stories – grants from Trusts and Foundations increased and support from companies increased ninefold from the previous year meaning overall we increased income by 16.5% – at the same time individual donations fell by 20% and event income remains woefully below pre-pandemic levels.

In the expectation that these economic pressures and the enormous social welfare restrictions will continue, we have invested in fundraising to help to continue to lift income, we have managed our operational costs and reduced our deficit, and we have taken steps to ensure our reserves are invested at a level to maximise returns, so that we can face the future with some optimism and achieve our ambitious plans for the years ahead.

So, for now, let’s take a moment to celebrate our successes. We are proud of what we’ve achieved in 2022 with our partners and supporters, and the impact we’ve had. We have responded to over 800 vital phone calls from individuals with AT and family members in crisis, increased our professional counselling support by 8%, and helped young people and families to feel less alone because of the advice, support, and social connections we’ve provided.

We have joined other charities in the fight for disability equality, and provided 30 emergency grants to help families pay for fuel bills, specialist mobility equipment, urgent housing adaptations and respite activities. We have answered 216 urgent calls from health and social care professionals, and held 197 zoom meetings, so that professionals can effectively and sensitively recognise and address patients’ and carers’ health, education, housing, and financial needs. And to catch up on the covidbacklog, additional specialist AT medical clinics were organized through the year with our NHS partners, increasing our associated costs by 40%.

In 2022, we also committed to funding new research studies to advance our understanding of the condition, and we supported people with AT to participate in clinical trials where affordability prevented them from doing so. Together with our international scientific, medical, and financial partners we are pleased that we are moving closer towards finding treatments and ultimately a cure for AT.

Our greatest strength has been our network of fantastic supporters; fundraisers, donors, medics, scientists, and families affected by AT. Thank you for being with us. And thank you to all our volunteers and staff who have worked with skill, determination, and heart to achieve the things we’ve been able to. You have all played a vital part in helping to provide care and support for today and hope for tomorrow, and we are forever grateful.

Mike Detsiny Chair of Trustees

  • 90% of individuals with a rare disease and their carers, feel anxious, stressed, and depressed. 36% of patients and 19% of carers had had suicidal thoughts. (BMC Health Services Research, vol 22, 2022, Spencer Tansley et al.)

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AT Society Trustees’ Report and Accounts 2022

Trustees’ report

The AT Society’s Board of Trustees have pleasure in presenting their report, together with the Society’s audited financial statements for the year ended 31 December 2022.

This report has been prepared in compliance with the duty in Section 17 (5) of the Charities Act 2011 to have due regard to public benefit guidance published by the Charity Commission.

The trustees, who are directors of the company for the purposes of the Companies Act, 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 (Charities SORP FRS 102) (effective 1 January 2019).

Objectives and activities

The purpose of the Society, as set out in the company’s Memorandum of Association, is “the relief of sickness and distress among persons suffering from ataxia telangiectasia”.

Vision

A world where no one need suffer from the devastating effects of AT.

Mission

To improve the quality of life and quality of care for people living with AT while actively promoting research to improve treatments and ultimately bring about a cure.

We do this by:

During 2022, we ensured the Society’s objectives were always in line with our mission.

In undertaking our work, we are dedicated to ensuring people affected by AT can live the best lives possible, and are supportive, empowering, respectful, and professional in all we do. Where we come up against barriers, we seek agile and innovative solutions to ensure we can be there for those who need us.

And we are collaborative, working in partnership with AT experts in the UK and across the world to maximise influence, awareness, and knowledge.

Ensuring the Society’s work achieves its aims and delivers public benefit

The Memorandum of Association sets out the charitable purposes for public benefit. The trustees review the Society’s aims, objectives and activities each year during the planning cycle. This review examines the activities of the previous year and measures the outcomes of those activities against the objectives of that year’s plan by reference to the benefits delivered to people affected by AT. It also serves to ensure that the Society’s aims and objectives remain focused on its stated purpose and enables the trustees to consider how the Society’s activities further its charitable purposes for the public benefit, in accordance with the Charity Commission’s guidance.

The Society has a formal budgeted business plan for the year, which is reviewed regularly, in accordance with the key objectives above.

The Society’s activities and achievements in pursuit of these objectives in 2022 are detailed below. We have set out specific examples of activities in our Impact Report, which complements this report (www.atsociety.org.uk/about-us).

Achievements and performance

This was an exceptional year as the continuation of COVID and uncertainties around future restrictions, the increased mental health issues, the severe lack of government funding of social care, and the beginnings of double-digit inflation resulted in tough times for many, and none more so than those affected by ataxia telangiectasia.

Throughout the year people affected by AT continued to face unfair extra costs. The higher cost of specialist equipment, higher usage of everyday essentials and energy, the continuous fight to receive the correct disability benefit, all made it harder for AT households to meet the extra cost of disability. Refugee families affected by AT especially faced a disproportionate struggle to get the right support and respect.

Against that backdrop, it can be easy to lose hope, but at the AT Society optimism continued to shine.

In furtherance of our aims, we supported 225 individuals with AT and their family members, representing a 5% increase on last years numbers.

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AT Society Trustees’ Report and Accounts 2022

How we changed lives in 2022

“ The AT Society support has helped 79 208 me to be me. children and adults received virtual specialist support expert medical attention And I like that. sessions took place at the AT clinics ”

“ Learning about AT was invaluable and has helped us better understand how 15 % we can provide a positive school experience increase in emergency for our AT pupil. funding for families in crisis ”

“ It was amazing to see the young people having fun and socialising. ”

£ 3.70 was raised for every £1 spent on fundraising

“ 5 years on from my son’s diagnosis and I am thankful every day that we have the AT Society to help us. ”

5 % increase in the number of people supported

“ The Erydel clinical trial has completely changed the life of our child. It has given us hope. ”

44 % increase in our investment for therapy

“ Seeing people who have no judgements or expectations of you is freeing. ”

51 people enjoyed respite and wellbeing activities at our activity weekend

“ They’re a fantastic crutch and support to the whole family. ”

96 % felt less stressed and more relaxed after our AT social event

We increased the emergency financial support we were able to provide to help with food and energy bills, respite care and housing support, and we increased our bespoke mental health provision to ensure that as NHS waiting lists for mental health care kept growing, we were able to be there for people with AT.

We are proud that we ensured that families affected by AT felt less alone, because of the advice and support we were able to give; that young people were able to stay connected and felt more fulfilled because of the social activities we ran; that medical queries were answered as the number of AT specialist clinics doubled to deal with the backlog

from the pandemic; and that parents with a newly diagnosed child were given hope because of the investments in medical research we have been able to make in the year.

The AT Society clinic continues to be a crucial element of our work with AT families, not only in the delivery of essential medical care by AT experts, but also in helping to join up the national service with local health and social care teams.

Our involvement in the two unique, dedicated AT clinics at Nottingham University Hospital and the Royal Papworth Hospital, is essential to their operation. From the organisation of families’ transport and individual appointments with clinicians, to the funding

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AT Society Trustees’ Report and Accounts 2022

Trustees’ report

of accommodation and food and the attendance of our team being on-hand to offer emotional support, advice and professional counselling, this bespoke service is extremely valuable. Feedback demonstrated that 100% of families attending the clinics would be keen to visit again in future and 83% reported valuing meetings with our Family Support team prior to their medical appointments.

The COVID backlog put increased pressure on this service and as a result we ran 3 extra clinics in the year and will do so again in 2023 to ensure that everyone in the UK with AT can reap the benefits of AT clinics.

This year we were pleased to be able to create a series of films showing our specialist clinics. These are designed for children and their families new to clinic, to reduce any anxieties prior to attending and increase their understanding of what to expect.

Thanks to our wonderful supporters and to the excellent AT research community, we have also been able to continue investing in medical research. In 2022, we committed to supporting 6 new important research studies and to continuing to fund 4 ongoing projects. All of these studies are essential in advancing our understanding of the condition, driving us towards better treatments and moving us closer to a cure for AT.

Some examples of the work we are funding are detailed in our Impact Report, and can be found here: www.atsociety.org.uk/about-us/ourpublications-and-films/our-annual-report-andaccounts/

It was also an exciting year in the field of clinical trials, as some encouraging results were reported, and new trials discussed. EryDel’s international trial to assess a treatment to slow the progression of ataxia in AT, for instance, reported positive outcomes; IntraBio announced optimistic results in alleviating ataxia symptoms; and Adrestia Therapeutics continued their journey towards their development of new drugs to correct the underlying disease biology of AT.

In the year we diverted some of our funding to keep UK families involved and to ensure financial hardship was not a barrier to their children’s participation.

We have not achieved this alone. As part of our everyday work we’ve worked in partnership with experts across the world and across different

sectors, to make this happen. Our experts include people with lived experience of AT, who have been, and always will be, central to all we have achieved. Our Board of Trustees with 55% representation of lived experience, our user consultations, our WhatsApp groups with young people with AT, and our Scientific Advisory Board with parent representatives, all ensure that the delivery of our services is shaped by those who know best.

Plans for future periods

The Society’s plans for 2023 and the following years are built around our priority areas of:

We will do this by continuing to focus on developing our mental health work to help people to cope with the challenges that AT brings and will be led by the insights of people affected by AT. We will provide expert and friendly advice and support to all service users, their families, and professionals. And we will fight for the overlooked needs of disabled people and stand up to the injustices that make life harder for people with AT.

Key priorities will be to: work with our NHS partners to run more of our specialist AT medical clinics to continue catching up on the COVID backlog; deliver in person events with beneficiaries to improve social opportunities and mental wellbeing; progress our work to ensure all our services are fully accessible; continue our equity, diversity and inclusion ambitions and develop an action plan to guide our next steps in this area; recruit a part-time fundraiser and organise new fundraising events.

We will also continue our efforts to reduce our carbon footprint by moving closer to becoming a paperless office, reducing travel by meeting online where possible; recycling waste and equipment; and buying environmentally friendly products.

Financial review

During the year we were pleased to have increased our income, controlled costs and significantly reduced our deficit.

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AT Society Trustees’ Report and Accounts 2022

The AT Society received income of £429,145 (2021: £368,340) and spent £481,406 (2021: £500,634).

The Society therefore had an overall deficit for the year of £52,261 (2021: £132,294). With funds brought forward from previous years, the Society will carry forward £583,989 in reserves (2021: £636,250).

Unrestricted general funds carried forward have increased to £364,843 (2021: £324,532). The Society also carries forward restricted funds of £219,146 (2021: £311,718), which the trustees consider to be at an appropriate level.

Of the Society’s total income some 49.6% was received in donations from individuals, companies and trusts; 49.5% in grants from NHS England, the European Commission, the Medical Research Council and Trusts. The remaining income came from trading and investment income.

Investment policy

The trustees recognise their duty to maximise the financial returns generated from the way in which the charity’s assets are invested and do so responsibly and ethically in a way that is consistent with the aims and values of the AT Society. In 2022 the trustees evaluated the investment returns and agreed to move funds from a deposit account with the Charities Aid Foundation, to a more flexible deposit platform with Flagstone, still managed by CAF, and which involves investing in UK banks with higher interest-bearing returns and no risk of capital loss. The senior management and trustees monitor the investments regularly.

Reserves policy

The AT Society maintains free unrestricted reserves:

The Board of Trustees regularly review the above criteria with reference to the AT Society’s strategy and Annual Plan and determine the target level of free reserves to meet these.

Given the turbulent economic climate and the risks to income and cost increases, in 2022 the Board considered it prudent for a charity of this size, heavily reliant upon voluntary income, to maintain a minimum level of 9 months of operational costs. In 2023 this will amount to unrestrictive reserves of approximately £350,000.

The Board of Trustees will at times designate funds from free reserves for significant project costs or replacement of major assets.

The charity also holds restricted reserves which represent the excess of restricted income over restricted expenditure. Restricted reserves are closely monitored to ensure they are used in accordance with the terms specified when the funds were received.

Our operational budget currently includes a planned deficit in recognition of the investment in research and support services that the Society committed to during the year.

Fundraising

Whilst the AT Society engages in public fundraising, it does not use external professional fundraisers or commercial participators for this. However, professional fundraisers are used for fundraising from Trusts and Foundations. The charity observes and complies with the relevant fundraising regulations and codes and is a member of the Fundraising Regulator.

The AT Society is committed to safeguarding any personal fundraising data that we process, ensuring that it is stored and shared safely and securely. We are compliant with GDPR and review all data privacy and protection policies regularly to ensure that they remain strong and effective.

Structure

The Society is a charitable company limited by guarantee, incorporated in England and Wales, and registered with the Charity Commission in England. The company was established under a Memorandum of Association which defined its objects and powers; it is governed by its Articles of Association. In the event of the company being wound up members may be required to contribute an amount not exceeding £1 each.

Directors of the company are also trustees for the purposes of charity law. The directors are normally referred to as ‘trustees’ and in normal years meet formally as a Board 4 times each year. Through the pandemic trustees met monthly in order to keep abreast of challenges the coronavirus brought. The Board of Trustees is the governing body of the Society. It agrees the overall strategy for the organisation and the policies and procedures for the implementation of this strategy. It also oversees the effective and equitable use of the Society’s resources and ensures that it meets all its legal, regulatory and ethical obligations.

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AT Society Trustees’ Report and Accounts 2022

Trustees’ report

Our research work is overseen by our Scientific Advisory Board, who report to the main Board. The membership of the SAB is listed on the inside back cover of this report. Our research applications undergo a rigorous peer reviewed process and only those deemed to be of the highest quality are passed for funding. We are regulated by the Association of Medical Research Charities.

The Society’s staff team is based at the offices in Harpenden. The Director of Fundraising & Operations shares leadership of the charity with the Head of Services and Head of Research. Remuneration of the Society’s staff team of 8 is reviewed annually against performance and affordability. The team organises and provides the vast majority of the services delivered by the Society and manages and supports the Society’s volunteers.

Governance and management

The Board of Trustees may consist of between 3 and 20 members. Under the terms of the Memorandum and Articles of Association, directors may either be appointed by the Board to fill a casual vacancy or are to be elected by the Society’s members at the annual general meeting to serve a 3 year term of office. All appointed directors must submit themselves to election at the annual general meeting immediately following their appointment.

All directors of the company give their time voluntarily and receive no benefit from the charity by virtue of the office they hold. Any expenses reclaimed from the charity are set out in note 10 to the accounts. Where a director is a potential beneficiary of the charity, the holding of his office will not be a bar to his or her being an actual beneficiary. In such circumstances, the director declares his interest and takes no part in the discussion or decision concerning his or her application for benefit.

All trustees active in 2022 are listed on the inside back cover of this report. In accordance with our aim to be a user-led organisation, over half of our Board have experience of living with AT.

Trustee induction and training

Vetting and checks of trustees is carried out in line with Charity Commission guidance. All new trustees receive an information pack outlining their legal obligations under charity and company law, a copy of the previous year’s annual report and accounts, a copy of the annual plan, a copy of the company’s Memorandum & Articles of Association and a representative selection of the Society’s current literature. Inductions take place with all staff.

The Board has a positive approach to its own training and development, regularly reviewing skills and needs and organising appropriate training, whether for the group or for individuals. All trustees complete safeguarding training appropriate for their role and all are encouraged to keep abreast of developments both in charity governance and in current issues concerning AT.

Staff

The Society values its staff and aims to be an exemplary employer of a skilled and committed workforce. It does not discriminate in any way in the recruitment, training or retention of employees.

The Society actively encourages its staff to enhance and extend their skills, particularly with regard to its charitable objectives, and learning and personal development are central to the appraisal process.

During the year we enjoyed the support of office, administrative, event volunteers and volunteers from companies who gave communications and design support, legal and administrative help, for which we are immensely grateful.

Collaborations

The Society is a national organisation operating throughout the UK and collaboration is at the heart of what we do. It is essential that we work closely with all organisations and individuals connected to AT and we are proud that joining with experts across the world and across different sectors is part of our everyday work.

Our involvement in establishing the Global A-T Alliance in 2020, is a good example (www.cureat. org/). The Alliance has a strong collective belief that together we are stronger and through 2022 delivered a range of shared activities. The connections give small international AT organisations access to vital skills, knowledge, and experience, while working towards the same overall vision: to improve lives for people affected by AT and to find a cure.

To strengthen our ability to campaign on behalf of and meet the needs of people living with AT, we are affiliated to:

We are members of the NCVO and we work closely with Ataxia UK. For instance, the Head of Ataxia

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AT Society Trustees’ Report and Accounts 2022

Research assists the AT Society in the implementation of the AT Society’s research strategy.

Our long-established AT Clinical Research Network brings together researchers, clinicians and patient organisations from around the world and is a very active and useful body.

Our AT clinics (the world’s first) provide an integrated service for people living with AT, funded and supported by NHS England. We work closely with the professional arms of the service: the specialist AT centres at Nottingham University Hospital (paediatric), the Royal Papworth Hospital (adult) and the diagnostic services. The centres of excellence have developed a unique expertise in this field and provide multi-disciplinary AT clinics.

Our specialist clinics and our strong links with those medics in the world with expertise in AT mean that we can successfully act as an important point of contact for local professionals seeking expert opinion. Most have little in-depth knowledge of AT and so our role here is imperative. Equally we help ensure recommendations from clinic professionals are understood and implemented by patients’ local health teams to speed up access to health.

Risk management

The trustees have a risk management process which includes an annual review of the risks to which the charity may be exposed, and the establishment and implementation of systems and procedures designed to mitigate the impact on the charity of the risks identified. In the current challenging times, the risk register is reviewed frequently. Key risk areas identified for 2023 include:

Safeguarding

Protecting the welfare of children, young people and vulnerable adults who receive the services we provide is central to our culture and is a governance priority. Everyone who works or volunteers for the AT Society has a responsibility to safeguard and promote service users’ welfare, alongside a duty to recognise, respond and share concerns or worries about possible abuse and harm in a timely fashion. This is reflected in our safeguarding policies and procedures, which include safe recruitment

measures and clear training requirements, which are regularly reviewed by our safeguarding leads.

Grant-making policies

The Society makes two types of grant to meet its objectives:

Research grants

The Society is a member of the Association of Medical Research Charities (AMRC) and works to AMRC standards in its research grant programme. Our Scientific Advisory Board ensure that research grants undergo a robust peer-reviewed process and confirm that:

The AT Society’s research strategy and procedures are reviewed by the SAB and reported to the trustee board, with priorities agreed to ensure the greatest possible impact for its research programme.

For the next few years, the AT Society is primarily focusing its research efforts on understanding and treating the neurological problems caused by AT and the loss of the ATM protein. This is the feature of AT which has the greatest impact on everyday life for people with AT. It not only affects movement and manual dexterity, but also speech, eating and nutrition, posture and potential scoliosis and it also contributes significantly to the development of lung disease.

In line with our research strategy, during 2022 we supported various research projects. Some we are co-funding and some we fund alone:

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AT Society Trustees’ Report and Accounts 2022

Trustees’ report

Our full research programme can be viewed at: www.atsociety.org.uk/research/

Individual support grants

The Society provides financial support grants to any individual affected by AT, to assist with the cost of items that they need as a result of the condition but cannot easily afford, and for which they cannot get help from other sources. An application form is used and there are formal criteria for the assessment and awarding of grants, approved by the AT Society Support Team. Applicants need the support of an appropriate professional and need to demonstrate what efforts have been made to obtain statutory or other funding.

Legal and administrative information

The Ataxia Telangiectasia Society is a charitable company limited by guarantee, incorporated in England and Wales, in 2004, under company number 5177145. It is registered with the Charity Commission in England under the same name, registration number 1105528. The Society uses the working name “AT Society”. The registered address is listed on the inside back cover.

Statement of trustees’ responsibilities

The trustees (who are also the directors of The Ataxia Telangiectasia Society for the purposes of company law) are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). Company law requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure of the

charitable company for that period. In preparing those financial statements, the trustees are required to:

The trustees are responsible for keeping proper accounting records which 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 Companies Act 2006.

The trustees 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.

In accordance with company law, as the directors of the company, we certify that:

Auditors

Hicks and Company, the auditors, were re-appointed as the charitable company’s auditors during the year and have expressed their willingness to continue in that capacity. A resolution will be proposed at the annual general meeting that they be re-appointed as auditors to the charity for the ensuing year.

This report has been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 relating to small companies.

Approved by the Board of Trustees on 17 July 2023 and signed on its behalf by:

David MacDonald

Treasurer

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AT Society Trustees’ Report and Accounts 2022

Independent auditor’s report

Independent auditor’s report to the members of The Ataxia Telangiectasia Society

Opinion

We have audited the financial statements of The Ataxia Telangiectasia Society (the ‘charitable company’) for the year ended 31 December 2022 on pages 12 to 20. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor's responsibilities for the audit of the financial statements section of our report. We are independent of the charitable company 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 charitable company’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

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

Other information

The trustees are responsible for the other information. The other information comprises the information included in the annual report, 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 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, 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.

Opinion on other matters prescribed by the Companies Act 2006

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

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Report of the Trustees.

We have nothing to report in respect of the following matters where the Companies Act 2006 requires us to report to you if, in our opinion:

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AT Society Trustees’ Report and Accounts 2022

Independent auditor’s report

Responsibilities of trustees

As explained more fully in the Statement of Trustees’ Responsibilities set out on page 8, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

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

Our responsibilities for the audit of the financial statements

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue 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 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:

Based on our understanding of the entity and sector in which it operates, we identified the principal risks of non-compliance with laws and regulations relating to charitable companies and the application

of charitable funds. We also considered those laws and regulations that have a direct impact on the preparation of the financial statements. We communicated identified laws and regulations throughout our team and remained alert to any indications of non-compliance throughout the audit.

We assessed the susceptibility of the charity’s financial statements to material misstatement, including obtaining an understanding of how fraud may occur, by making enquiries of the trustees and management as to where they considered there was susceptibility to fraud and considering the internal controls in place to mitigate fraud risks and noncompliance with laws and regulations.

In response to the risk of fraud through management bias (including the risk of override of controls) and the risk of irregularities and non-compliance with laws and regulations, we designed procedures which included, but were not limited to:

There are inherent limitations in our audit procedures outlined above. The more removed that laws and regulations are from financial transactions, the less likely it is that we would become aware of non-compliance. Auditing standards also limit the audit procedures to identify non-compliance with laws and regulations to enquiry of the trustees and other management and the inspection of regulatory and legal correspondence, if any. Material misstatements that arise due to fraud can be harder to detect than those that arise from error as they may involve deliberate concealment or collusion. We are not responsible for preventing noncompliance and cannot be expected to detect non-compliance with all laws and regulations.

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AT Society Trustees’ Report and Accounts 2022

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 company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the company and the company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

Philip Dean

Senior Statutory Auditor

For and on behalf of Hicks and Company

Chartered Accountants and Statutory Auditor Vaughan Chambers Vaughan Road Harpenden Hertfordshire AL5 4EE 17 July 2023

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AT Society Trustees’ Report and Accounts 2022

Statement of financial activities Year ended 31 December 2022

Unrestricted Restricted Total funds Total funds
funds funds 31.12.22 31.12.21
Notes £ £ £ £
Income and endowments from:
Donations and legacies 2 206,327 219,084 425,411 367,087
Charitable activities
Other trading activities 3 1,592 – 1,592 1,190
Investment income 4 2,142 – 2,142 63
Total 210,061 219,084 429,145 368,340
Expenditure on:
Raising funds 5 117,439 – 117,439 92,811
Charitable activities 6
Research 57,278 1,079 58,357 179,939
Clinic 34,592 56,906 91,498 65,210
Welfare 602 120,047 120,649 81,756
Information 31,097 7,715 38,812 30,132
Education 21,555 – 21,555 17,987
Governance 33,096 – 33,096 32,799
Total 295,659 185,747 481,406 500,634
Net (expenditure)/income (85,598) 33,337 (52,261) (132,294)
Reconciliation of funds
Total funds brought forward 324,532 311,718 636,250 768,544
Transfers between funds 125,909 (125,909) – –
Total funds carried forward 364,843 219,146 583,989 636,250

The statement of financial activities includes all gains and losses in the year. All incoming resources and resources expended derive from continuing activities.

The notes on pages 15 to 20 form part of these financial statements.

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AT Society Trustees’ Report and Accounts 2022

Statement of financial position Year ended 31 December 2022

Unrestricted Restricted Total funds Total funds
funds funds 31.12.22 31.12.21
Notes £ £ £ £
Fixed assets
Tangible assets 13 2,251 – 2,251 1,931
Current assets
Debtors 14 16,641 77,497 94,138 157,258
Cash at bank 357,460 201,099 558,559 613,863
374,101 278,596 652,697 771,121
Creditors:
Amounts fallingdue within oneyear 15 (11,509) (59,450) (70,959) (136,802)
Net current assets 362,592 219,146 581,738 634,319
Total assets less current liabilities 364,843 219,146 583,989 636,250
Net assets 364,843 219,146 583,989 636,250
Funds: 17
Unrestricted funds 364,843 324,532
Restricted funds 219,146 311,718
Total funds 583,989 636,250

These financial statements have been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 relating to small charitable companies.

The notes on pages 15 to 20 form part of these financial statements.

The financial statements were approved by the Board of Trustees on 17 July 2023 and were signed on its behalf by:

David MacDonald Treasurer

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AT Society Trustees’ Report and Accounts 2022

Statement of cash flows Year ended 31 December 2022

31.12.22 31.12.21
Notes £ £
Cash fows from operating activities:
Cash used in operations a (56,162) (175,693)
Net cash used in operating activities (56,162) (175,693)
Cash fows from investing activities:
Purchase of tangible fxed assets		 (1,284) (504)
Interest received 2,142 63
Net cash used in investing activities 858 (441)
Change in cash and cash equivalents
in the reporting period (55,304) (176,134)
Cash and cash equivalents
at the beginning of the reporting period 613,863 789,997
Cash and cash equivalents
at the end of the reporting period 558,559 613,863

Notes to the statement of cash flows Year ended 31 December 2022

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

31.12.22 31.12.21
£ £
Net expenditure for the reporting period
as per the statement of fnancial activities		 (52,261) (132,294)
Adjustments for:
Depreciation charges 964 794
Interest received (2,142) (63)
(Increase)/decrease in debtors 63,120 (115,487)
Increase/(decrease)in creditors (65,843) 71,357
Net cash used in operating activities (56,162) (175,693)

14

AT Society Trustees’ Report and Accounts 2022

Notes to financial statements Year ended 31 December 2022

1. Accounting policies

Basis of preparing the financial statements

The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) ‘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)’, Financial Reporting Standard 102 ‘The Financial Reporting Standard applicable in the UK and Republic of Ireland’ and the Companies Act 2006. The financial statements have been prepared under the historical cost convention.

Income

All incoming resources are included in the Statement of Financial Activities when the charity is entitled to the income and the amount can be quantified with reasonable accuracy. The following specific policies are applied to particular categories of income:

Expenditure

Expenditure is recognised on an accruals basis as a liability is incurred. Expenditure includes VAT, which cannot be recovered, and is reported as part of the expenditure to which it relates:

activities and those costs of an indirect nature necessary to support them

Leases

Rentals payable under operating leases are charged to the Statement of Financial Activities evenly over the period of the lease.

Grants payable

Grants payable are charged in the year when the offer is conveyed to the recipient except in cases where the offer is conditional, such grants being recognised as expenditure when the conditions are fulfilled.

Allocation and apportionment of costs

Costs have either been directly allocated or have been allocated on the basis of an estimate of time spent.

Tangible fixed assets

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

useful life.
Equipment – 25% on cost
Furniture – 20% on cost

Taxation

The charity is exempt from corporation tax on its charitable activities.

Fund accounting

Unrestricted funds are available for use at the discretion of the trustees in furtherance of the general objectives of the charity.

Designated funds are unrestricted funds earmarked by the Board of Trustees for particular purposes.

Restricted funds are subject to restrictions on their expenditure imposed by the donor or through the terms of appeal.

Pension costs and other post-retirement benefits

The charitable company operates a defined

contribution pension scheme. Contributions payable to the charitable company’s pension scheme are charged to the Statement of Financial Activities in the period to which they relate.

15

AT Society Trustees’ Report and Accounts 2022

Notes to financial statements Year ended 31 December 2022

2. Donations and legacies

31.12.22 31.12.21
£ £
Donations 118,846 79,178
Grants 212,521 199,590
Fundraising activities 82,422 64,845
Income tax refund 11,622 23,439
Other income – 35
425,411 367,087

Grants received, included in the above, are as follows:

follows:
31.12.22 31.12.21
£ £
Grants from NCG 56,886 55,310
Grants from European
Commission (4,551) 43,256
Grant from Medical Research
Council 72,686 60,107
Grants from Trusts 87,500 40,917
212,521 199,590

3. Other trading activities

31.12.22 31.12.21
£ £
Sale of merchandise 1,592 1,190
4. Investment income
31.12.22 31.12.21
£ £
Deposit account interest 2,142 63

5. Raising funds

31.12.22 31.12.21
£ £
Staff costs 71,113 46,562
Information, literature,
publicity etc. 3,521 6,106
Merchandise 949 330
Other direct costs 16,456 20,941
Support costs allocated
to activities 25,400 18,872
117,439 92,811

6. Charitable activities costs

Research Clinic Welfare Information Education Governance 2022 Total 2021 Total
£ £ £ £ £ £ £ £
Costs directly
allocated to activities
Staff costs 13,687 48,371 55,845 22,593 15,919 18,018 174,433 154,558
Support events – – 636 – – – 636 2,706
Newsletter – – 906 906 – – 1,812 1,442
Welfare, equipment,
respite etc. – – 23,597 – – – 23,597 3,200
Research costs
and conference 14,777 – – – – – 14,777 19,469
Clinic costs – 30,193 – – – – 30,193 18,850
Information, literature,
publicity 250 – 1,321 7,715 – – 9,286 –
Other direct costs – – – – – 10,172 10,172 10,074
Grant funding
of activities		 25,713 – 21,377 – – – 47,090 139,904
Support costs
allocated to activities 3,930 12,934 16,967 7,598 5,636 4,906 51,971 57,620
58,357 91,498 120,649 38,812 21,555 33,096 363,967 407,823

16

AT Society Trustees’ Report and Accounts 2022

7. Analysis of grants

7.
Analysis of grants
31.12.22 31.12.21
£ £
Grants to institutions 25,713 121,673
Grants to individuals 21,377 18,231
47,090 139,904

Grants to individuals are made to provide financial support grants to any individual affected by AT, to assist with the cost of items they need as a result of the condition. Grants to institutions are made to fund research.

The following grants to institutions have been made in the year:

in the year:
£
Natural History of Ataxia-Telangiectasia (7,787)
Royal Papworth Hospital – the use of
ultrasound (USS) in the assessment of
people with Ataxia-Telangiectasia’s ability
to swallow versus use of videofuoroscopic
swallow studies (VFSS)		 3,500
Joint fundingof 5 researchprojects* 30,000
25,713

8. Net expenditure

Net expenditure is stated after charging:

31.12.22 31.12.21
£ £
Auditors’ remuneration 5,040 4,560
Depreciation
– owned assets 964 794
Operating lease rentals
– land and buildings 27,288 22,894
Operating lease rentals
– equipment 5,845 5,885

9. Operating lease commitments

The charity's total future minimum lease payments under non cancellable operating leases are as follows for each of the periods:

for each of the periods:
Land & buildings Equipment
2022 2021 2022 2021
Less than one year – 15,819 5,866 5,866
Two to fve years – – 16,038 20,143
More than fveyears – – – 1,761
– 15,819 21,904 27,770

10. Trustees’ remuneration and benefits

No member of the Board of Trustees received any remuneration during the year (2021: £Nil).

Trustees’ expenses

Travel expenses of £Nil were reimbursed during the year (2021: £Nil).

11. Staff costs

11. Staff costs
31.12.22 31.12.21
£ £
Salaries 217,424 178,504
Social security costs 16,089 12,007
Pensionprovision 12,033 10,609
245,546 201,120

No employees had emoluments in excess of £60,000 (2021: none).

During the year the Society paid £54,010 in employee benefits to key management personnel for their services to the charity (2021: £52,022).

17

AT Society Trustees’ Report and Accounts 2022

Notes to financial statements Year ended 31 December 2022

11. Staff costs (continued)

During the year, the Society employed the equivalent of 6.5 full-time staff (2021: 5.5 FTE).

The company operates a defined contribution pension scheme in respect of the employees. The scheme and its assets are held by independent managers. The pension charge represents contributions due from the company and amounted to £10,286 (2021: £8,786).

12. Comparatives for the statement of financial activities

Unrestricted
funds 2021
£		 Restricted
funds 2021
£		 Total
funds 2021
£
Income and
endowments
from:
Donations
and legacies
Charitable
activities:		 150,906 216,181 367,087
Other trading
activities		 1,190 – 1,190
Investment income
63		 – 63
152,159 216,181 368,340
Expenditure on:
Raising funds		 92,811 – 92,811
Charitable
activities:
Research 137,291 42,648 179,939
Clinic
Welfare		 9,717
8,037		 55,493
73,719		 65,210
81,756
Information 30,132 – 30,132
Education 17,987 – 17,987
Governance 32,799 – 32,799
328,774 171,860 500,634
Net movement
in funds (176,615) 44,321 (132,294)
Reconciliation
of funds
Total funds
brought forward 441,869 326,675 768,544
Gross transfers
between funds 59,278 (59,278)
Total funds
carried forward 324,532 311,718 636,250

13. Tangible fixed assets

Equipment
£		 Furniture
£		 Total
£
Cost
At 1 January 2022
Additions
At 31 December
2022		 16,798
1,284
18,082		 4,472
–
4,472		 21,270
1,284
22,554
Depreciation
At 1 January 2022
Charge for theyear		 16,420
447		 2,919
517		 19,339
964
At 31 December
2022 16,867 3,436 20,303
Net book value
At 31 December
2022 1,215 1,036 2,251
At 31 December
2021 378 1,553 1,931

14. Debtors: amounts falling due within one year

14. Debtors: amounts
within one year		 falling due
31.12.22 31.12.21
£ £
Trade debtors 4,784 –
Prepayments and
accrued income 86,461 154,365
Other debtors 2,893 2,893
94,138 157,258

Other debtors include a franking machine deposit of £200 which falls due in more than one year. Accrued income relates primarily to a grant of £72,686 from the Medical Research Council.

18

AT Society Trustees’ Report and Accounts 2022

15. Creditors: amounts falling due within one year

31.12.22
£		 31.12.21
£
Support grants payable 2,270 4,791
Institutional grants payable 50,031 119,305
Trade creditors
Accruals and deferred income		 1,099
12,260		 956
7,849
Taxation and social security 5,299 3,901
70,959 136,802
Grant funding
commitments		 Support
grants
£		 Institutional
grants
£		 Total
£
Grant liability at
1 January 2022 4,791 119,305 124,096
Grants awarded
in the year		 21,377 25,713 47,090
Grants paid
in theyear (23,898) (94,987) (118,885)
Grant liability at
31 December 2022
2,270		 50,031 52,301

17. Movement in funds

Net
At movement At
1.1.22 in funds 31.12.22
£ £ £
Unrestricted funds
General fund 143,572 12,516 156,088
Designated
research fund		 180,960 27,795 208,755
324,532 40,311 364,843
Restricted funds
Research 7,014 11,185 18,199
Welfare, support,
equipment 294,704 (96,542) 198,162
Information 10,000 (7,215) 2,785
311,718 (92,572) 219,146
Total funds 636,250 (52,261) 583,989

16. Contingent liabilities

16. Contingent liabilities
31.12.22 31.12.21
Research grant funding £ £
Natural History of
Ataxia-Telangiectasia
– Statistics Consultancy 3,500 3,500
Functional and metabolomic
analysis of iPSC-derived
Purkinje neurons from
AT patients 30,000 30,000
Modulation of RELB/p52
– dependent NF-kB
activities to improve
neurodegenerative
symptoms of AT		 80,160 80,160
Joint funding of 5 research
projects (see note 7) 30,000 –
143,660 113,660

The above contingent liabilities relate to research grant funding where payment of the remaining funding is contingent on receipt of a satisfactory progress report from the institution in receipt of the award. It is anticipated that these contingent liabilities will be funded from designated research funds (see note 17) during 2023 and 2024.

19

AT Society Trustees’ Report and Accounts 2022

Notes to financial statements Year ended 31 December 2022

17. Movement in funds (continued)

17. Movement in funds (continued)
Incoming
resources		 Resources
expended		 Transfers
in/(out)		 Movement
in funds
£ £ £ £
Unrestricted funds
General fund 210,061 (256,677) 59,132 12,516
Designated research fund – (38,982) 66,777 27,795
210,061 (295,659) 125,909 40,311
Restricted funds
Research 79,041 (1,079) (66,777) 11,185
Clinic costs 56,906 (56,906) – –
Welfare, support, equipment 82,637 (120,047) (59,132) (96,542)
Information 500 (7,715) – (7,215)
219,084 (185,747) (125,909) (92,572)
Total funds 429,145 (481,406) – (52,261)

Purpose of restricted funds

Research

Restricted research income relates primarily to a grant received from the Medical Research Council to fund research projects. A transfer back to unrestricted designated funds has been made as the cost of these research projects was originally funded from unrestricted designated funds.

Clinic costs

Represents amounts received from NHS England in relation to our work supporting the specialist AT clinics run at Nottingham University Hospital and the Royal Papworth Hospital.

Welfare, support and equipment

The balance remaining represents provisions to fund work to support adults with AT to live more independently, plus funds restricted to particular items of equipment and geographical areas and to our welfare and communications work more broadly. Amounts spent in the year include the funding of a young adult activity weekend, emergency support grants, grants towards equipment for adults and young people, grants towards counselling, grants towards housing modifications and the funding of family support staff.

A transfer of £59,132 has been made from the restricted welfare fund back to general funds in respect of core costs advance funded from general funds but subsequently offset against a restricted legacy fund, the terms of which permit the funds to be used towards the core costs of the charity.

Information

The balance carried forward at the year end relates to funds to be used for the production of information materials in respect of AT.

Designated research fund

During 2019, the Board of Trustees designated £350,000 for research. During 2022, £38,982 (2021: £88,803) has been spent from this fund on research. A transfer of £66,777 has been made back to unrestricted designated reserves from restricted funds in respect of research expenditure initially made from unrestricted designated funds which was subsequently funded by restricted income received in the year. It is anticipated that the remaining designated funds will be spent during 2023 and 2024.

18. Related party disclosures

No trustee or any other person related to the charity had any personal interest in any contract or transaction entered into by the charity during the year or the previous year save as a potential beneficiary of the charity in the normal course of its activities.

19. Ultimate controlling party

In the opinion of the trustees, there was no controlling party during the year.

20. Statutory information

The Ataxia Telangiectasia Society is a private company, limited by guarantee, registered in England and Wales. The company’s registered number and registered office address can be found on the facing page.

20

AT Society Trustees’ Report and Accounts 2022

Trustees, patrons and advisors

Directors/Trustees

Michael Detsiny Andrew Mills Chair of Trustees Treasurer (resigned October 2022)

Professor Joe Penny Jeggo PembertonPowell

David Dr Jayesh Nicholas Gull MacDonald Bhatt Treasurer (appointed October 2022) Rachel Jhilna Shah Lian Yarlett Poupard

Patrons

Mrs Joan Bartholomew

The Lord Bilimoria of Chelsea CBE DL Mr Brian Conley The Lady Parkinson DL The Revd Canon Paul Thomas OBE

Registered office and operational address

AT Society Unit 54 Thrales End Business Centre Thrales End Lane Harpenden Hertfordshire AL5 3NS Telephone: 01582 760733

Senior Management

Susie Norbury Director of Fundraising & Operations

Kay Atkins Head of Services

Professor Penny Jeggo Head of Research

Auditors

Hicks & Company Chartered Accountants Statutory Auditors Vaughan Chambers Vaughan Road Harpenden Herts AL5 4EE

Scientific Advisory Board

Professor Rob Dineen Chair

Dr Anke Hensiek Professor Penny Jego Professor Rick Livesey Dr Cynthia Oviatt-Rothblum Professor Laurence Pearl Natasha Schneider Professor Malcolm Taylor Erik Thomassen Dr William Whitehouse Our Scientific Advisory Board expertly provide independent scientific advice on our research priorities, all in a voluntary capacity, to help shape AT research for the future.

Bankers

Email: info@atsociety.org.uk Website: www.atsociety.org.uk

Company Registered in England and Wales, Number: 5177145

Charity Commission Registered in England, Number: 1105528

The Co-operative Bank PO Box 250 Skelmersdale WN8 6WT

HSBC Bank plc 1 High Street Harpenden Herts AL5 2RS

CAF Bank Ltd. PO Box 289 West Malling Kent ME19 4TA

----- Start of picture text -----
Our mission is
to improve the quality
of life and quality of care
for people living with AT
while actively promoting
research to improve
treatments and ultimately
bring about a cure.
----- End of picture text -----

To find out how you, or your organisation can get involved in our work and help change lives, please visit us: ATSOCIETY.ORG.UK

Unit 54 01582 760733 Thrales End Business Centre info@atsociety.org.uk Thrales End Lane www.atsociety.org.uk Harpenden Hertfordshire Reg. Charity No. 1105528 AL5 3NS Reg. Company No. 5177145