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2020-12-31-accounts

The Ataxia-Telangiectasia Society HeaderTrustees’ Report and Accounts 2020

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Our vision
is a world where
no one need suffer
from the devastating
effects of AT
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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.

“I am proud to say that during this last year, the charity continued to perform well and to focus efforts on meeting the needs of children, young people and adults with AT, in their hour of need.”

Mike Detsiny Chair of Trustees

Chair of Trustees’ statement

2020 was one of the hardest years we have faced at the AT Society, and yet, as Chair of Trustees I am proud to say that during this last year, the charity continued to perform well and to focus efforts on meeting the needs of children, young people and adults with AT, and their families.

When the COVID-19 crisis took hold, the AT Society had to respond quickly to an urgent and unprecedented demand for help from families caring for children with complex health needs, as well as develop innovative solutions to our research programme which was hard hit, and navigate a forced, unplanned office move during this period. All the while the charity faced a significant loss of income as fundraising events were cancelled and activities reduced.

After the quick diversifying of income streams, and the generosity of our wonderful supporters, the actual loss of income was curtailed. These results and the prudent financial management and cost-cutting measures during the year mean that we retain a healthy level of reserves and are able to respond proactively to the needs of the children and their families now, and in the future.

Our colleagues worked hard to support families in their hour of need and the whole Board is extremely proud of their response to the crisis, and their enduring commitment to the charity’s values.

During this time we have learned a great deal. We have reviewed our risk management and taken action to strengthen it, we have increased the training the team receive to ensure that our people have the very best learning opportunities, we have adapted our policies and procedures and strengthened our governance – and we are better placed to deal with the challenges that lie ahead.

With the brilliant help from communications consultancy Madano, we have also strengthened our campaign materials. We have introduced our ‘We’re AT’ campaign, where the ‘AT’ letters within specifically selected words draw out and highlight the AT Society’s involvement, engagement and goals. We hope you like it.

Thank you to all our supporters for getting us through one of the most uncertain and challenging years in the charity’s history. Whilst we celebrate the great impact we’ve had in an uncertain year, our families and our organisation still face an equally challenging year ahead. There is significant uncertainty in the economic outlook, which is likely to affect our fundraising income. We will monitor the environment closely and increase our efforts to use resources in the most effective way possible for the benefit of the individuals and families we support.

I and my fellow trustees are extremely proud to be able to help this wonderful charity and grateful to the dedicated team who work so hard to make it successful.

Mike Detsiny Chair of Trustees

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AT Society Trustees’ Report and Accounts 2020

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 2020.

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”. The vision and mission are:

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 2020 the Society’s high-level objectives matched with these points.

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 2020 are detailed below. We have set out specific examples of activities in our Impact Report, which complements this report (www.atsociety.org.uk/aboutus).

Achievements and performance

The AT Society is the only charity in the UK providing specialist, practical and therapeutic support for people affected by AT, which we do through a range of activities including advocacy, outreach, respite, counselling and medical interventions. We also fund research to improve treatments and find a cure.

2020 was an exceptionally challenging year. The measures taken by the UK government to control the spread of the coronavirus involved a high degree of social disruption, impacting on the delivery of and demand for the activities of the AT Society, and the availability of staff for work. COVID-19 had a disproportionately negative effect on people living with AT and we were forced into rethinking our plans both for the work we do to support families affected by AT, and the way we raise funds to pay for it. Our programmes adapted and expanded through the year to take on the challenges presented to us, including rapidly modifying our working practices to a virtual model, so that our frontline staff could work from home safely and our helpline could still operate no matter where we were.

The implications meant that our forecasted income significantly fell during the year as fundraising events were cancelled and activities considerably reduced. We implemented cost cutting measures to offset the loss and focused efforts on other income streams, ending the year with the deficit as originally predicted. The trustees express their sincere gratitude to all grant-giving trusts, including those who provided emergency grants, individual donors and fundraisers, who have made our work possible over the last 12 months both by their

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financial support and by the generous giving of their time. Their support is always crucial, but never more than during a pandemic.

At a time when the volume of work increased dramatically, the size of our staff team decreased. We did not need to furlough anyone during this period. We provided flexible and supportive working solutions and took the opportunity to upskill staff and expand capabilities, embracing technology and digital events. The Society remain incredibly grateful to the team’s enduring commitment to the cause during the difficult year.

A significant challenge faced by many families during the year was a lack of clear information and guidance specific to their needs. The AT Society worked hard to develop a library of online resources and provided daily updates to help families navigate their way through the crisis safely – from how to cope with shielding, advice about the vaccine, to preparing to go back to school or to one of our specialist AT clinics. The resources became vital sources of information for the AT community and visits to our website increased by 117% and new visitors by 58%.

We worked closely with health and social care services throughout the year. We resolved 161 educational, housing and benefits injustices, championing human rights and addressing inequalities. We delivered 25 training events to improve pupils' schooling and we worked closely with NHS England to reopen our specialist AT clinics at Nottingham University Hospital and the Royal Papworth Hospital, for essential medical consultations.

Existing support was tailored in response to the pandemic’s devastating impact on mental wellbeing. We knew that families, young adults with AT living alone, and families with a newly diagnosed child, would need our support when they didn’t have their networks around them, so we made sure we personally contacted everyone, provided expert advice and information throughout the year, set up online social events to connect to one another and increased our therapeutic provision and practical support. We were pleased that moving our social support events online amid shielding helped to address severe isolation; 86% said we had significantly reduced their feelings of isolation.

To offset financial and social losses, 27 emergency grants were provided and helped towards providing disability equipment, essential housing adaptations, technical equipment and grocery bills. 99,000 minutes were spent providing a friendly and listening ear to people in crisis needing to talk and we ran

emergency surgeries for families struggling. 100% declared feeling more empowered and better able to cope after these interventions.

We took part in the first global AT awareness campaign: “Ataxia telangiectasia is difficult to say. It is more difficult to live with” reaching thousands across the world. And we joined other UK disability charities to press for change and fight for equality.

We continued to promote and commission high quality AT research and advanced our understanding of AT. Three existing research projects progressed through the year, albeit at a slower pace given the lockdown restrictions and the temporary closure of laboratories, and after implementing an innovative and rigorous assessment process with our Scientific Advisory Board & Review Panel we also identified two new research projects for 2021. Further information on these projects can be found in our Impact Report 2020.

As our AT International Clinical Research Conference, due to be held in October 2020, was cancelled, we instead led meetings with leading USA, UK and European clinicians and scientists, to increase our collaborative working across the international AT community and to keep sharing expertise and findings. We also worked collaboratively to create the ‘AT Global Alliance’. This is a group of AT organisations from across the world, currently consisting of The AT Society (UK), Action for AT (UK), BrAshA-T (Australia), Aefat (Spain) and the A-T Children’s Project (US). As AT is such a rare condition, it is critical that our resources committed to finding a cure are maximised and that we achieve this through a coordinated effort with other AT organisations.

The AT Society continued to participate in international clinical trials with Intrabio and Erydel, both of which are developing therapies for the treatment of AT to improve quality of life. Whilst the pandemic slowed recruitment down for these trials, progress is being made and we are hopeful of some positive results in 2021.

Plans for future periods

The Society’s plans for 2021 and the following years are built around our priority areas of:

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AT Society Trustees’ Report and Accounts 2020

Trustees’ report

We will: deliver our new ‘Building Resilience’ project, to help improve mental health and cope with the challenges AT brings; extend our existing work with children and teenagers and develop new services with them; continue to provide expert and friendly advice to service users, their families, and professionals; stand up to the injustices and remove barriers that make life harder for people with AT.

A key priority will be to work with our NHS partners to run more of our specialist AT clinics at Nottingham University Hospital and the Royal Papworth Hospital in Cambridge. In 2020 the number of adults able to attend a clinic fell by 58% during the year as medical and administrative staff were redeployed and for children, it fell by 15%, with approximately one third of appointments taking place online.

We will also keep developing new materials to improve awareness, understanding and management of the condition; increase our investment into research to accelerate the breakthroughs we are all seeking; and hold international AT clinical meetings, prioritizing the impact of COVID-19.

We will work collaboratively and launch the AT Global Alliance (www.cureat.org), the first international directory for AT, and we will deliver regular science talks for families to improve understanding of AT.

Our digital offering for both service users and funders will be further expanded, and opportunities for increased income generation continuously explored.

We will continue to ensure everything we do is measured objectively and led by the insights of people affected by AT. And we will make the most of our assets by building a culture of excellence at all levels within the charity to ensure we have a strong organisation for many years to come. We are extremely proud of our long serving and highly skilled staff and will invest further in their development and work hard to retain our most important asset – our people.

Financial review

During the year the AT Society received income of £320,758 (2019: £1,061,873) and spent £505,594 (2019: £553,027).

The Society therefore had an overall deficit for the year of £184,836 (2019: surplus of £508,846). With funds brought forward from previous years, the Society will carry forward £768,544 in reserves (2019: £953,380).

Unrestricted general funds carried forward have decreased to £441,869 (2019: £641,222). The Society also carries forward restricted funds of £326,675 (2019: £312,158), which the trustees consider to be at an appropriate level.

Of the Society’s total income some 29% (2019: 8%) was donated by grant-giving trusts, 18% (2019: 69%) by individuals and companies and 25% (2019: 13%) by the fundraising activities of our supporters (i.e. individuals and companies provided some 43% (2019: 82%) of the Society’s total income). The remaining 28% (2019: 10%) came from NHS England’s contribution towards the AT specialist clinics, the European Commission grant for the development of the International AT Registry and also some small amounts of interest income and trading receipts.

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 2020 the trustees have continued to hold funds on a deposit account with the Charities Aid Foundation rather than investing them where there would be the risk of a capital loss. The trustees will continue to monitor the Society’s cash position carefully and will ensure funds are moved whenever possible to a higher interestbearing deposit account.

Reserves policy

The policy aims to ensure that the Society is maximising its charitable expenditure in any given year, whilst at the same time maintaining financial prudence to ensure its sustainability and capacity to manage unforeseen expenditure or unanticipated loss of income. We seek, at all times, to provide a level of working capital that protects the continuity of our core work.

The Board of Trustees review the policy with reference to the AT Society’s strategy and Annual Plan and determine the target level of free reserves to meet these. The Board of Trustees will at times designate funds from free reserves for significant project costs or replacement of major assets. Given the current unpredictability in income levels the reserves policy will be monitored on an ongoing basis and adjusted as the trustees deem necessary.

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.

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Our operational budget currently includes a planned deficit in recognition of the investment in research that the Society has committed to. In light of our drop in income, the trustees have also approved appropriate cost-cutting measures and income generating activities to work towards achieving a balanced-budget in 2022, whilst retaining the desired level of reserves.

Fundraising

Whilst the AT Society engages in public fundraising, it does not use external professional fundraisers or commercial participators. The charity nevertheless observes and complies with the relevant fundraising regulations and codes and is a member of the Fundraising Regulator. During the year the AT Society was compliant with these regulations and codes, and the charity did not receive any complaints relating to its fundraising practice.

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 four 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.

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 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. Until June 2020 this was under the leadership of the Chief Executive, who was responsible for implementing the strategy and policies agreed by the Board. From September 2020, following the departure of the Chief Executive, many of these responsibilities were delegated to the Director of Fundraising & Operations. Remuneration of the Society’s staff team 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 three 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 three year term of office. All appointed directors must submit themselves to election at the annual general meeting immediately following their appointment. There is no limit to the number of terms a director may serve, subject to approval of the membership in general meeting. One third of the directors must retire by rotation at each annual general meeting and each retiring director may offer himself for re-election.

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 11 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 2020 are listed on the inside back cover of this report.

Trustee induction and training

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.

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Trustees’ report

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.

During the pandemic we redeployed members of our dedicated staff team to ensure frontline services were not compromised, and new virtual fundraising could take place. We did not furlough any members of staff during this period.

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.

In normal times the Society benefits from the support of volunteers. 2020 was an exception to this as regular event volunteers and office volunteers were unable to help. We did enjoy the support of occasional office and administrative volunteers and corporate teams to assist with an office relocation, 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 of the partnerships we have developed. In 2020 we were definitely stronger together.

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

The Society also enjoys good relations with other AT support groups around the world. In 2011 it established the AT Clinical Research Network, to bring together researchers, clinicians and patient organisations from around the world, and this

network was still active throughout 2020. We are also a key member of the newly formed AT Global Alliance.

Our AT clinics (the world’s first) provide an integrated service for people living with AT, funded and supported by NHS England. We collaborated weekly and often daily through the pandemic with the professional arms of the service: the specialist AT centres at Nottingham City Hospital (paediatric), the Royal Papworth Hospital (adult) and Professor Malcolm Taylor’s laboratory at the University of Birmingham, which provides 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 care.

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 2021 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, and they are regularly reviewed by our safeguarding leads.

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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 regularly 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 every-day 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 2020 we funded three ongoing research grants and assessed two new grants for funding in 2021, namely:

Our full research strategy can be viewed at: www.atsociety.org.uk/wp-content/uploads/2020/05/ A-T-Society-Research-Strategy-2020-1.pdf

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 Grants Sub Committee. 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:

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AT Society Trustees’ Report and Accounts 2020

Trustees’ report

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 15 July 2021 and signed on its behalf by:

Andrew Mills Treasurer

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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 2020 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).

This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an 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 charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

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:

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AT Society Trustees’ Report and Accounts 2020

Independent auditor’s report

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:

Responsibilities of trustees

As explained more fully in the Statement of Trustees’ Responsibilities set out on pages 7–8, 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 noncompliance with laws and regulations, we designed procedures which included, but were not limited to:

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AT Society Trustees’ Report and Accounts 2020

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.

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.

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 16 July 2021

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AT Society Trustees’ Report and Accounts 2020

Statement of financial activities Year ended 31 December 2020

Unrestricted Restricted Total funds Total funds
funds funds 31.12.20 31.12.19
Notes £ £ £ £
Income and endowments from:
Donations and legacies 2 166,361 151,459 317,820 1,046,823
Charitable activities
Welfare 5 – – – 11,968
Other trading activities 3 2,227 – 2,227 1,928
Investment income 4 711 – 711 1,154
Total 169,299 151,459 320,758 1,061,873
Expenditure on:
Raising funds 6 102,133 – 102,133 127,406
Charitable activities 7
Research 151,671 16,077 167,748 79,853
Clinic 173 54,333 54,506 76,788
Welfare 21,373 66,532 87,905 185,725
Information 33,185 – 33,185 38,078
Education 24,293 – 24,293 21,727
Governance 35,824 – 35,824 23,450
Total 368,652 136,942 505,594 553,027
Net (expenditure)/income (199,353) 14,517 (184,836) 508,846
Reconciliation of funds
Total funds brought forward 641,222 312,158 953,380 444,534
Total funds carried forward 441,869 326,675 768,544 953,380

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 2020

Statement of financial position Year ended 31 December 2020

Unrestricted Restricted Total funds Total funds
funds funds 31.12.20 31.12.19
Notes £ £ £ £
Fixed assets
Tangible assets 14 2,221 – 2,221 331
Current assets
Debtors 15 9,880 31,891 41,771 22,458
Cash at bank 448,603 341,394 789,997 953,359
458,483 373,285 831,768 975,817
Creditors:
Amounts fallingdue within oneyear 16 (18,835) (46,610) (65,445) (22,768)
Net current assets 439,648 326,675 766,323 953,049
Total assets less current liabilities 441,869 326,675 768,544 953,380
Net assets 441,869 326,675 768,544 953,380
Funds: 18
Unrestricted funds 441,869 641,222
Restricted funds 326,675 312,158
Total funds 768,544 953,380

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 15 July 2021 and were signed on its behalf by:

Andrew Mills Treasurer

13

AT Society Trustees’ Report and Accounts 2020

Statement of cash flows Year ended 31 December 2020

31.12.20 31.12.19
Notes £ £
Cash fows from operating activities:
Cash (used in)/generated from operations a (161,484) 484,868
Net cash (used in)/provided by operating activities (161,484) 484,868
Cash fows from investing activities:
Purchase of tangible fxed assets		 (2,589) –
Interest received 711 1,154
Net cash (used in)/generated from (1,878) 1,154
Change in cash and cash equivalents
in the reporting period (163,362) 486,022
Cash and cash equivalents
at the beginning of the reporting period 953,359 467,337
Cash and cash equivalents
at the end of the reporting period 789,997 953,359

Notes to the statement of cash flows

Year ended 31 December 2020

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

31.12.20 31.12.19
£ £
Net (expenditure)/income for the reporting period
as per the statement of fnancial activities		 (184,836) 508,846
Adjustments for:
Depreciation charges 699 265
Interest received (711) (1,154)
Increase in debtors (19,313) (16,364)
Increase/(decrease)in creditors 42,677 (6,725)
Net cash (used in)/provided by operating activities (161,484) 484,868

14

AT Society Trustees’ Report and Accounts 2020

Notes to financial statements Year ended 31 December 2020

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:

to such 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 2020

Notes to financial statements Year ended 31 December 2020

2. Donations and legacies

31.12.20 31.12.19
£ £
Donations 149,595 813,333
Grants 70,081 83,058
Fundraising activities 80,831 139,176
Income tax refund 17,313 11,256
317,820 1,046,823

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

follows:
31.12.20 31.12.19
£ £
Grants from NCG 54,333 51,403
Grants from European
Commission 15,748 31,655
70,081 83,058

3. Other trading activities

31.12.20 31.12.19
£ £
Sale of merchandise 2,227 1,928

4. Investment income

31.12.20 31.12.19
£ £
Deposit account interest 711 1,154
5. Income from charitable activities
31.12.20 31.12.19
Activity £ £
Family meetings &
conferences etc:		 Welfare – 11,968

6. Raising funds

31.12.20 31.12.19
£ £
Staff costs 60,261 78,106
Information, literature,
publicity etc. 1,440 7,857
Merchandise 1,683 1,061
Other direct costs 19,818 16,765
Support costs allocated
to activities 18,931 23,617
102,133 127,406

7. Charitable activities costs

Research Clinic Welfare Information Education Governance 2020 Total 2019 Total
£ £ £ £ £ £ £ £
Costs directly
allocated to activities
Staff costs 39,271 32,346 41,923 25,474 18,349 21,530 178,893 166,451
Support events – – 1,873 – – – 1,873 46,922
Newsletter – – 1,832 1,832 – – 3,664 4,114
Welfare, equipment,
respite etc. – – 1,670 – – – 1,670 30,151
Research fees
and conference 22,070 – – – – – 22,070 30,157
Clinic costs – 13,484 – – – – 13,484 40,688
Information, literature,
publicityetc. – – – – – – – 8,076
Other direct costs – – – – – 10,813 10,813 6,791
Grant funding
of activities		 96,795 – 28,067 – – – 124,862 63,566
Support costs
allocated to activities 9,612 8,676 12,540 5,879 5,944 3,481 46,132 28,705
167,748 54,506 87,905 33,185 24,293 35,824 403,461 425,621

16

AT Society Trustees’ Report and Accounts 2020

8. Analysis of grants

31.12.20 31.12.19
£ £
Grants to institutions 96,795 9,435
Grants to individuals 28,067 54,131
124,862 63,566

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 42,732
Natural History of Ataxia-Telangiectasia
– Statistics Consultancy 4,063
Functional and metabolomic analysis
of iPSC-derived Purkinje neurons
from ATpatients		 50,000
96,795

9. Net (expenditure)/income

Net (expenditure)/income is stated after charging:

31.12.20 31.12.19
£ £
Auditors’ remuneration 4,560 4,560
Depreciation
– owned assets 699 265
Operating lease rentals
– land and buildings 8,692 –
Operating lease rentals
– equipment 3,878 4,175

10. 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
2020 2019 2020 2019
Less than one year 22,894 – 4,297 3,333
Two to fve years 15,819 – 7,174 8,198
More than fveyears – – – 1,025
38,713 – 11,471 12,556

In September 2020 the AT Society moved office premises and entered into a new two year property lease.

11. Trustees’ remuneration and benefits

No member of the Board of Trustees received any remuneration during the year (2019: £Nil).

Trustees’ expenses

Travel expenses of £50 were reimbursed to one trustee during the year (2019: £104).

12. Staff costs

12. Staff costs
31.12.20 31.12.19
£ £
Salaries 211,954 215,842
Social security costs 14,906 16,936
Pensionprovision 12,294 11,779
239,154 244,557

No employees had emoluments in excess of £60,000 (2019: none).

During the year the Society paid £54,797 in employee benefits to key management personnel for their services to the charity (2019: £61,876).

At the start of the year, the Society employed the equivalent of 6.5 full-time staff. After some changes mid-way through the year, we ended the year with a staff team of almost 6 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 £10,999 (2019: £10,374).

17

AT Society Trustees’ Report and Accounts 2020

Notes to financial statements Year ended 31 December 2020

14. Tangible fixed assets

13. Comparatives for the statement of financial activities

of fnancial activities
Unrestricted
Restricted
Total
funds 2019
funds 2019
funds 2019
£
£
£
Income and
endowments from:
Donations
and legacies
893,481
153,3421,046,823
Charitable activities:
Welfare
–
11,968
11,968
Other trading
activities
1,928
–
1,928
Investment income
1,154
–
1,154
896,563
165,3101,061,873
Expenditure on:
Raising funds
127,406
–
127,406
Charitable activities:
Research
32,850
47,003
79,853
Clinic
25,185
51,603
76,788
Welfare
81,428
104,297
185,725
Information
38,078
–
38,078
Education
18,703
3,024
21,727
Governance
23,450
–
23,450
347,100
205,927
553,027
Net movement
in funds
549,463
(40,617)
508,846
Reconciliation of funds
Total funds
brought forward
91,759
352,775
444,534
Total funds
carried forward
641,222
312,158
953,380		 Equipment
Furniture
Total
£
£
£
Cost
At 1 January 2020
16,294
1,883
18,177
Additions
–
2,589
2,589
At 31 December
2020
16,294
4,472
20,766
Depreciation
At 1 January 2020
15,963
1,883
17,846
Charge for theyear
181
518
699
At 31 December
2020
16,144
2,401
18,545
Net book value
At 31 December
2020
150
2,071
2,221
At 31 December
2019
331
–
331
15. Debtors: amounts falling due
within one year
31.12.20
31.12.19
£
£
Prepayments and
accrued income
38,379
22,458
Other debtors
3,392
–
41,771
22,458
Other debtors includes a rent deposit of £2,693
which falls due in more than one year.
31.12.20
£		 31.12.19
£
Prepayments and
accrued income 38,379 22,458
Other debtors 3,392
41,771		 –
22,458

18

AT Society Trustees’ Report and Accounts 2020

16. Creditors: amounts falling due within one year

18. Movement in funds

within one year
31.12.20
31.12.19
£
£
Support grants payable
5,232
–
Institutional grants payable
28,305
–
Trade creditors
13,103
5,323
Accruals and deferred income
13,620
11,810
Taxation and social security
5,185
5,635
65,445
22,768
Support
Institutional
Grant funding
grants
grants
Total
commitments
£
£
£
Grant liability at
1 January 2020
–
–
–
Grants awarded
in the year
28,067
96,795
124,862
Grants paid
in theyear
(22,835)
(68,490)
(91,325)
Grant liability at
31 December 2020 5,232
28,305
33,537
17. Contingent liabilities
31.12.20
31.12.19
Research grant funding
£
£
Natural History of
Ataxia-Telangiectasia
16,558
59,289
Natural History of
Ataxia-Telangiectasia
– Statistics Consultancy
6,750
10,000
Functional and metabolomic
analysis of iPSC-derived
Purkinje neurons from
AT patients
30,000
80,000
Modulation of RELB/p52
– dependent NF-kB
activities to improve
neurodegenerative
symptoms of AT
160,321
–
213,629
149,289		 Net
At
movement
At
1.1.20
in funds
31.12.20
£
£
£
Unrestricted funds
General fund
291,222
(102,558)
188,664
Designated
research fund
350,000
(96,795)
253,205
641,222
(199,353)
441,869
Restricted funds
Research
3,351
–
3,351
Welfare, support,
equipment
308,807
4,517
313,324
Information
–
10,000
10,000
312,158
14,517
326,675
Total funds
953,380
(184,836)
768,544
Incoming
Resources
Movement
resources
expended
in funds
£
£
£
Unrestricted funds
General fund
169,299
(271,857)
(102,558)
Designated
research fund
–
(96,795)
(96,795)
169,299
(368,652)
(199,353)
Restricted funds
Research
16,077
(16,077)
–
Clinic costs
54,333
(54,333)
–
Welfare, support,
equipment
71,049
(66,532)
4,517
Information
10,000
–
10,000
151,459
(136,942)
14,517
Total funds
320,758
(505,594)
(184,836)
Purpose of restricted funds
Rh

Research

Restricted research income and expenditure relate primarily to a three year Horizon 2020 grant from the European Commission to build and run an international AT patient registry.

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.

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.

It is anticipated that these contingent liabilities will be funded from designated research funds (see note 18) during 2021 to 2023.

19

AT Society Trustees’ Report and Accounts 2020

Notes to financial statements Year ended 31 December 2020

18. Movement in funds (continued)

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 emergency support grants, grants towards equipment for adults and young people, grants towards housing modifications, virtual online events and the funding of family support staff.

Designated research fund

During 2019, the Board of Trustees designated £350,000 for research. During 2020, £96,795 has been spent on research. It is anticipated that the remaining designated funds will be spent during 2021 to 2023.

19. Non adjusting post balance sheet event

Subsequent to the year end it was agreed that the AT Society would collaborate on a project to fund an AT cerebellar neurodegeneration and inositol phosphate signalling study.

It is expected that the AT Society will contribute £11,260 in 2021 and £11,260 in 2022 in respect of the project. Grant instalment payments are contingent on receipt of satisfactory progress reports.

20. 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.

21. Ultimate controlling party

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

22. 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 2020

Trustees, patrons and advisors

Directors/Trustees

Michael Detsiny Andrew Mills Chair of Trustees Treasurer

Linda Clark

Lynda Finn

Professor Penny Jeggo

Lian Yarlett

Nicholas Gull

Jhilna Shah

Chief Executive

Patrons

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

William Davis (until June 2020)*

Registered office and operational address

Auditors

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

Registered office and operational address from October 2020:

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

Bankers

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

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

HSBC Bank plc 1 High Street Harpenden Herts AL5 2RS

Company Registered in England and Wales, Number: 5177145

Charity Commission Registered in England, Number: 1105528

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

Scientific Advisory Board

Professor Penny Jeggo Chair

Dr Anke Hensiek Professor Rick Livesey Dr Cynthia Oviatt-Rothblum Professor Laurence Pearl Professor Malcolm Taylor Dr William Whitehouse

----- 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:

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