Trustees, Report and Accounts 2024 YAT SOCLety DVOC ' Ataxla TeLan9lect OLL Iv RAN {( V49lttt•sl• 6AR IJ taxi tasia
Welcomè 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. 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. Message from the Chair of Trustees, Mike Detsiny Trustees, Annual Report Objectives and activities Achievements and performance Structure, governance and management Financial review Principal risks and uncertainties Plans for the future Statement of trustees responsibilities Independent auditor's report Statement of financial activities Statement of financial position Statement of cash flows Notes to the financial statements Reference and administrative information 14 21 "Together we can really make a diFFerence and ensure there is hope for the Future and support For today." Mike Detsiny Chair of Trustees
Chair OF Trustees, statement Messa9e from the Chair of Tfustees. Mike Detsiny In 2025 I will be stepping down as Chair of The AT Society after ten years in the role. It has been one of my greatest honours to have the privilege to lead this incredible charity. But ten years is too long, and it is important my successor brings new drive and thinking to the role to ensure your Society continues to improve the service we deliver to those who need us and frequently rely on us to meet their needs. Inside this report you will find details of the many services we deliver and the increasin9 number of initiatives we are taking, from the new research we are involved in and the clinical trials on the horizon, to the broader support services now provided. I do hope you will find them full of hope and encouragement. Virtually every charity will tell you that their past year has been particularly challenging. that is the nature of the charity sector. However, I would argue that the last decade has been one of almost unparalleled difficulty for the sector and for small charities in particular. COVID and the cost-of-living crisis have made fundraising incredibly hard. Many small charities have failed to survive and, whilst COVID is not currently a major threat, the financial landscape is putting ever more strain on people's ability to donate. Unfortunately, given we currently have a no-grovrth economy, fundraising will inevitably get increasingly difficult. Against this challenging background we have managed to improve our range of services and, whilst our finances could always be better, they are currently strong enough for us to face the future with confidence. All this has been achieved thanks to the generosity of all of our wonderful supporters, and to the dedication of our staff team who seem to regard their efforts as a vocation rather than a job. Staff turnover is way lower than is the norm and no challenge seems too daunting to them. They are brilliantly led by Kay Atkins and Susie Norbury, and it has been my pleasure and privilege to work with them. The team's efforts have, of course, been supplemented by very many volunteers, and my fellow trustees. A new Chair will be elected at our AGM in May and tradition demands that no announcement can be made before then. However, l am very happy to inform readers that our Board have unanimously declared that they would like Rachel Poupard to lead us through the next sta9e of our development. Rachel has family experience of the cruelty of AT and indeed, her parents were the founders of our charity. I could not leave the AT Society in better hands. Mike Detsiny Chair of Trustees AT Society Trustees, Report and Accounts 2024
Trustees, report Tcustees Annual Report The AT Society's Board of Trustees have pleasure in presenting their report, together with the Society's audited financial ststements for the year ended 31 December 2024. objectives laid out in that year's plan and examine the impact these activities have had on individuals affected by AT. The review ensures that the Society's mission and objectives stay true to its core purpose and gives us This report has been prepared in compliance with the the opportunity to evaluate how the Society's work duty in Section 1715) of the Charities Act 2011 to contributes to its charitable aims for the public good, have due regard to public benefit guidance published particularly for those impacted by AT, in alignment by the Charity Commission. Reference and with the Charity Commission's guidance. administrative information is set out on the inside In working towards these priorities, the Society has a back cover, and forms part of this report. structured, budgeted business plan that is subject to The trustees, who are directors of the company for ongoing review. Below, we outline the Society's the purposes of the Companies Act, have adopted efforts and accomplishments for 2024 to the provisions of Accounting and Reporting by demonstrate how we have achieved our aims and Charities.. Statement of Recommended Practice confirm we have complied with our duty to have due applicable to charities preparing their accounts in regard to the guidance contained in the Charity accordance with the Financial Reporting Standard Commission's general guidance on how we have applicable in the UK and Republic of Ireland (Charities delivered public benefit when reviewing these. SORP FRS 1021 (effective 1 January 2019). Further details are available in our 2024 Impact Report at www.atsociety.org.uklabout-us. Objectlves and actlVLties Achievements and perFormance Ensuring the Society's work achieves its aims and delivers public benefrt Dedicated to providing support for today and The purpose of the Society and its public benefit as hope for tomorrow. set out in the company's Memorandum of Association, 2024 represented the AT Society's 35 year of is "the relief of sickness and distress among persons operation. The anniversary was marked in a number suffering from ataxia telan9iectssia" of ways throughout the year and included an Early Our vision is a world where no one need suffer from Day Motion in the House of Commons. In this the devastating effects of AT, and our mission is to important year, building on last year's progress, we improve the quality of life and quality of care for were pleased that overall, our income grew more people living Wlth AT while actively promoting than expected, which was largely due to some research to improve treatments and ultimately bring extremely generous legacies and grants. To deliver about a cure. growth and investment against the backdrop of ongoing challenges in the external world, including We do this by: the cost-of-living crisis and global insecurity, is huge Providing excellent and inclusive, specialist care testament to all involved and our thanks go to all our and support, information and advocacy to meet wonderful supporters for this. The uplift has enabled the challenges of living with AT us to invest in three new important medical research Promoting and commissioning high quality AT projects towards the end of the year and into 2025, research to cover our costs, and help towards improving our Raising awareness of AT and speaking out to investments for the year ahead. ensure that the voices of people affected by AT Through the year we continued to work collaboratively are heard, improving practice, policy-making and to achieve more informed, and more coordinated systems so that they really work for all children and health and social care services across all sectors. We adults affected by AT provided bespoke AT training for health and Working to achieve better, more informed, and education providers to improve their awareness and more coordinated health and social care services knowledge of AT: 100% said their knowledge of AT across all sectors had improved considerably and 97% said their work To fulfil our mission, the trustees undertake an annual with families and children affected by AT would review of the Society's goals, priorities, and initiatives significantly improve as a direct consequence. We as part of our plannin9 process. We look at the worked closely with the public sector to help local previous year's performance compared to the teams implement national advice; and with our AT Soci•ty Trustees. Report and Accounts 2024
international partners in the AT Global Alliance, we co-funded important medical research projects, as well as shared knowledge, expertise and best- practice to keep developing our collective skills. We committed to spending more on seniice delivery this year. A lar9e part of this increased investment was on supporting access to specialist health care and advice and helping towards funding the 280A increase in the number of children and adults attending the AT medical clinics throu9hout the year. The clinics are based at Nottingham University Hospital and Royal Papworth Hospltal and enable the progression of AT to be monitored and managed closely by AT professionals, helping enormously to improve individual lives. Of parents attending with their children, 72% came away with new approaches to better manage this complex condition. 930A of parents attending the children's AT specialist clinics said they were extremely useful and 870k of parents felt their concerns were addressed. living with AT and their 8CK)+ family members and carers, many of whom were also the very people hit hardest by the cost-of-living crisis. Nearly 40% of the emergency support grants provided were needed to help families pay for escalating cost of housing adaptations, utility bills and food bills; 30°A were on disability equipment and increased transport costs. In 2024 1000A of parents said the advice and support received to navigate their way through a crisis or to address specific and pressing issues around housing, benefits, and education needs was 'extremely helpful,. Beyond financial struggles, the emotional toll of living with AT can be overwhelming: anxiety, frustration, and uncertainty often weigh heavily on young people and their families. Recognising these challenges, we remained dedicated to offering meaningful support that prioritised mental well-being. Through play and art therapy, we provided children with a safe space to express their emotions, while counselling services equipped parents with coping strategies to manage stress and build resilience. We also developed useful tools to help families navigate their emotional journey. "I don't know how we would get through this without the AT Society" The year saw a 5% increase in new diagnosis, and using a combination of friendly home visits, online meetin9s and telephone calls, we were able to provide space where new families felt safe, respected and able to access services. It's imperative that we continue to reach families early, creatin9 person- centred and responsive approaches, and thanks to our supporters, we achieved this and continued to have an open-door approach that meant no one was turned away. "From the very beginning, the AT Society was there. They didn't just offer support they were part of the light that helped guide us. They stepped in with school visits, home visits, advice about housing, and support in ways we hadn't even thought about. We are forever grateful for everything they've done not just for our daughter, but for our entire family." In June we held an activity weekend in Cumbria for adults with AT, which was an overwhelming success. It promoted inclusion and belonging by connecting 39 individuals to each other and to wider opportunities and support. It helped those with a rare condition to no longer feel rare, but to feel a part of an important community. Friendships were made, challenges were conquered, and a lot of fun was had. Working closely with medics and the pharmaceutical industry, we have also invested time and money to support long-anticipated clinical trials. We have funded travel and overnight stays, to ensure financial hardship is not a barrier to a child's participation; disseminated information and hosted meetings to keep families informed; and worked closely with hospital teams to help recruitment to new trials. We were pleased that the first, NEAT, (https://quincetx.com/pipelinen started at the end of the year for children aged 6-9 years old and aims to slow the disease progression. A second, IB1001, which aims to improve the ataxia, will begin in 2025. Both trials represent significant milestones and strengthen our communities, hope for the future. Throughout the year, we remained committed to advancing high-quality AT research, deepening our understanding of this complex condition. In 2024, we were proud to commit to funding groundbreaking medical research taking place in the UK from 2024- 2028 that will lay the foundation for future clinical trials. We also delivered key talks and hosted international scientific discussion on important topics and kept our patient group informed throughout. While significant challenges remain, there is genuine reason for optimism, and our role in investing in research continues to be essential. We provided and developed expert and accessible information, advocacy and care to support 235 UK individuals coping with the everyday pressures of AT Soci•ty Trustees. Report and Accounts 2024
Trustees, report "I don't feel so lonely now. I've never met anyone with AT before and I've made good friends from this event." Under the terms of the Memorandum and Articles of Association, trustees (direttorsl 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 9eneral meeting to serve a 3-year term of ofPice. All trustees can serve a maximum of terms of office, and in very exceptional circumstances, the Board may agree to extend this to three terms. All appointed trustees must submit themselves to election at the annual general meeting immediately following their appointment. The Board of Trustees may consist of between 3 and 20 members. At the time of writing, we have 9 trustees and in accordance with our aim to be a user-led organisation, over half of our Board have lived experience of AT. Vetting and checks of trustees are carried out in line with Charity Commission guidance. All new trustees receive an information pack which includes their legal obligations under charity and company law, the annual report and accounts, the annual plan and budget, the company's Memorandum & Articles of Association, all mandatory policies and representative selection of the Society's current literature. Induction meetings take place with the Chair, and with all staff, and a conflict of interest always declared. 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 are DBS checked every 3 years and complete safeguarding training appropriate for their role every 2 years, and all are encouraged to keep abreast of developments both in charity governance and in current issues concerning AT. All trustees 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. Beneficiaries are not prevented from being trustees, but in such circumstances, the trustee declares their interest and takes no part in the discussion or decision that they may benefit from. All conflicts of interest are declared at the start of each meeting. "You got me doing things I wouldn't normally do. Being in a wheelchair won't stop me! Not anymore." We were also pleased to start our strategic review mid-way through 2024, which will be completed in 2025. We began this by surveying and collecting dats from our AT families through the year, deepening our understanding of how people with AT are experiencing the world, to ensure we can meet their needs and connect with audiences we're not yet reaching. The end strategy will likely involve proactively investing in medical research, broadening our care and support reach and accessibility, and increasing our fundraising investment to increase capacity and growth. We would like to thank everyone who has supported us to make this all possible in our 35 year. Every donation, no matter how big or small, makes a difference in our determined efforts to help people affected by AT to deliver a service that provides the best support now and hope for the future. Structure, Governance and Management 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, in 2004, registration number 1105528. The Society uses the working name "AT Society" The company was established under a Memorandum of Association which defined its objects and powers, and 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 and are the governing body of the Society. They meet formally as a Board of Trustees a minimum of four times each year and determine the overall strategy for the organisation and the policies and procedures for the implementation of the strategy. The Board also oversee the effective and equitable use of the Society's resources and ensures that it meets all its legal, regulatory and ethical obligations. AT Society Trustees. Report and Accounts 2024
The AT Society has two sub-committees that report into the Board, both consisting of volunteer scientific experts in the field and lay AT family members. Our Scientific Advisory Board, chaired by Professor Rob Dineen, advise on our research strategy and rigorously assess projects to maximise our investments into the highest quality research. Our Clinical Trials sub-committee, chaired jointly by Dr Rita Horvath and Dr Anke Hensiek, was set up in 2023, to keep abreast of the different trials on the horizon, provide information for families and improved connection with Principal Investigators conducting trials, and to provide input from patients in enabling new trials and trial design. Day to day operational and fundraising management is delegated to the Director of Operations, Susie Norbury. Our Family Support work is led by the Head of Services, Kay Atkins and our research programme is led, voluntarily, by our trustee and scientific advisor Professor Penny Jeggo. Remuneration of the Society's staff team of 9 15 reviewed annually against performance and affordability. We are a Living Wage Employer which means we ensure pay is fair for all roles and are committed to paying all our employees at or above the living wage as determined by the Living Wage Foundation. affiliated to the Genetic Alliance UK, Rare Disease UK, Euro-Ataxia, and are members of the NCVO and the Association of Medical Research Charities ("AMRC"). We work closely with Ataxia UK, neurological alliances, and UK and AT groups. Flnancial review During the year we were pleased to have increased our income whilst controlling costs. The AT Society received income of £657,491 (2023: £478,337) and spent £571,90812023: £662,593). The Society therefore had an overall surplus for the year of £85,583 (2023,. deficit of £184,256). The large deficit in 2023 was due to a commitment we made in the year to use our reser+/es to invest in new research studies and in our sUPPOrt services. With funds brought forward from previous years, the Society will carry forward £485,316 in reserves (2023: £399,733). Unrestricted general funds carried forward are at £404,744 (2023: £303,301). The Society also carries forward restricted funds of £80,572 (2023: £96,432), which the trustees consider to be at an appropriate level. Of the Society's total income some 42°A was received in donations and legacies from individuals, and donations from companies and trusts; 39Yo in grants from NHS England, the Medical Research Council and Trusts; and 17°A from fundraising challenges and events. The remaining income came from trading and investments. 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, and artively encourages its staff to enhance and extend their skills, particularly regarding its charitable objectives; learning and personal development are central to the appraisal process. The staff team organise and provide most of the services delivered by the Society and manage and support the Society's volunteers. During the year we enjoyed volunteer support to help with administrative duties, fundraising and beneficiary events, communications and design support, and legal advice, for which we are immensely grateful. The hours of voluntary support totalled approximately 1,000 through the year, representing a cost saving of around £10,000. All trustees and members of the sub-committees active in 2024 are listed on the inside back cover of this report. To strengthen our ability to campaign on beha5f of and meet the needs of people living with AT, we are 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. We have continued to use this system during 2024, and were pleased to have generated £13,875 in investment income, representing a 77% growth on the previous year. However, the trustees review the investment policy on an annual basis and in 2025 will be exploring whether there are other more beneficial opportunities to maximise our returns. AT Society Trustoes. Report and Accounts 2024
TfUStees' report Reserves policy The AT Society maintains free unrestricted reseNes: To provide a level of working capital that protects the continuity of our core work To provide a level of funding for unexpected opportunities To provide cover for risks such as unforeseen expenditure or unanticipated loss of income. The Board of Trustees regularly review this 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 economic climate and the risks to income and cost increases, 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 we committed to new research studies and made the conscious decision to allow our reserves to temporarily fall to 7 months. By the end of 2024 the Society built this back up to having unrestricted reserves of 8.5 months. Grant-making policies The Society makes two types of grants to meet its objectives: research grants and individual support grants. Research grants The Society is a member of the Association of Medical Research Charities (AMRCI and works to AMRC standards in its research grant programme. Our Scientific Advisory Board {SAB) ensure that research grants undergo a robust peer-reviewed process and confirm that: The project has scientific merit and meets the aims of the Society's research strategy The proposed study does not duplicate other current or recent research The Society is spending its research funds in the most effective way 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. The research projects we supported in 2024 can be seen on page 17 of the accounts. Our full research programme can be viewed at: The Board of Trustees will at times designate funds from free reser4es for significant project costs or replacement of major assets. In 2019 the trustees designated £350,000 to invest in medical research projects, of which we now have £93,330 remaining. It is anticipated that the majority of the remaining designated funds will be spent in 2025 on new research studies. The charity also holds restricted reserves of £80,572 which represent the excess of restricted income over restricted expenditure. These restricted reserves are closely monitored to ensure they are used in accordance with the terms specified when the funds were received, Fundraising Durin9 the year, the AT Society engaged in public fundraising, but did not use external professional fundraisers or commercial participators for this. However, professional fundraisers are used on occasion for fundraising from Trusts and Foundations. The charity continued to observe and comply with the relevant fundraising regulations and codes and is a member of the Fundraising Regulator. In 2024 the charity received no complaints relating to its fundraising practi. 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 because 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 ststutory or other funding. AT Society Trustees. Report and Accounts 2024
Principal risks and uncertainties 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, senior staff and Board of Trustees. Overall responsibility and accountability for risk lies with the Board of Trustees, who review it formally on an annual basis, and regularly throughout the year. The AT Society's approach to risk management centres on identifying 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 them. Our approach is informed by guidance provided by the Charity Commission, including its overarching definition of risk: "the uncertainty surrounding events and their outcomes that may have a significant impact, either enhancing or inhibiting any area of a charity's operations." The key risks areas identified remain the same as the previous years, and include: Insufficient funds to allow the charity to meet its objectives Information security and data protection Safeguarding children, young people and vulnerable adults Loss of key staff. To mitigate these risks, we have a fundraising strategy that we monitor closely to address underperforming income streams. Being a small national charity always means our resources are spread thinly, but it also means we are agile enough to respond immediately to challenges. Whilst donations under-performed in the year, an increase in legacy income presents opportunities to review our investment strategy, as well as invest in fundraising resource for longer term growth. The AT Society is committed to safeguarding any personal and 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. All staff receive annual training in managing data risks and updates on protection, and we have additional cyber-security insurance to moderate these risks and their associated costs. We have a committed and loyal staff team and turnover is well below the sector norm, however the loss of anyone would be significant for the charity and so to reduce these risks the AT Society works hard to be an employer where everyone feels they belong, and feels valued, supported, and motivated to stay. We provide flexible and hybrid working, a positive and inclusive work environment, wellness programs and professional development. Whilst we are a Livin9 Wage employer, salaries are far from high, especially for those based in the southeast. The Board of Trustees have committed to a salary review in 2025 and for adjustments to be made where necessary. Plans For Future periods To continue to ensure we are delivering the very best services for people affected by AT, in 2025 we will continue progressing the work we began in 2024 to deepen our understandin9 of how people with AT are experiencing the world, grow our impact, and connect with audiences we're not yet reaching. A key priority will be to complete a >5-year strategy which recognises and responds to the needs of people affected by AT and the economic situation that is likely to impact on the charity's operation for some years to come. Mid-way through the year we will hold our first, international AT clinical research conference since 2018. This will be a landmark event and will bring together the world's leading AT scientists and clinical experts to collaborate, share ideas and drive forward solutions to improve patient outcomes. Scientists, medical professionals and charities have been calling for this face-to-face meeting, which will lead into the AT Society Family Weekend, where UK families affected by AT come together for support, connection, and learnin9. In 2025 we will also: Protecting the welfare of children, young people and vulnerable adults who receive the services we provide 15 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 beneficiaries, welfare, alongside a duty to recognise, respond and share concerns or worries about possible abuse and harm in a timely fashion. AT Society Trustees. Report and Accounts 2024 Disseminate findings from our clinical conference and set up international legacy working groups to take forward key areas of development Continue 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
Trustees, report Provide expert and friendly advice and support to all service users, their families, and professionals Fight for the overlooked needs of disabled people and stand up to the injustices that make life so much harder for people with AT Work with our NHS partners to run our specialist AT medical clinics in the most effective and efficient way possible Deliver opportunities for wider family networks to meet and learn about AT to help them better support their family or friend with the condition Continue our equity, diversity and inclusion ambitions to ensure all our seNices are fully accessible Make sound judgements and estimates that are reasonable and prudent State whether applicable UK Accounting Standards and statements of recommended practice have been followed, subject to any material departures disclosed and explained in the financial statements Prepare the financial statements on the going concern basis, unless it is inappropriate to presume that the Society will continue on that basis. 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: So far as we are aware there is no relevant audit information of which the company's auditors are unaware Continue working Wlth, and investing in, the AT research community to advance our understanding of AT and move us closer to finding treatments and an eventual cure Work with pharmaceutical and biotech companies to help advance clinical trials and support patients to understand and access those trials Develop our efforts to reduce our carbon footprint by keeping moving closer to becoming a paperless office, reducing travel by meeting online where possible; recycling waste and equipment. and buying environmentally friendly products. As the trustees of the company, we have taken all the steps that we ought to have taken in order to make ourselves aware of any relevant audit information and to establish that the charity's auditors are aware of that information. Statement OF trustees, responsibllltles 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 19 May 2025 and signed on their behalf by: The trustees (who are also the directors of the Ataxia Telan9iectasia Society for the purposes of company lawl 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: Select suitable accounting policies and then apply them consistently Observe the methods and principles in the charity SORP David MacDonald Treasurer AT Society Trustees, Report and Accounts 2024
Independent auditor's report Independent auditof's report Opinion We have audited the financial statements of The Ataxia Telangiectasia Society (the 'charitable company,) for the year ended 31 December 2024 on pages 14 to 22. The financial reporting framework that has been applied in their preparation is applicable law and United Kin9dom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). In our opinion the financial statements: Give a true and fair view of the state of the charitable company's affairs as at 31 December 2024 and of its incoming resources and application of resources, including its income and expenditure, for the year then ended; Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and Have been prepared in accordance with the requirements of the Companies Act 2006. 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. Basis for opinion We conducted our audit in accordance with International Standards on Auditing (UK) {ISAs (UKI) and applicable law. Our responsibilities under those standards are further described in the Auditor's responsibilities for the audit of the financial statements see(ion of our report. We are Independent of the charltable 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. Opinion on other matters prescribed by the Companies Act 2006 In our opinion, based on the work undertaken in the course of the audit: The information given in the Report of the Trustees for the financial year for which the financial statements are prepared is consistent with the financial statements, and The Report of the Trustees has been prepared in accordance with applicable legal requirements. Matters on which we are required to report by exception In the light of the knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Report of the Trustees. 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 ststements 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 ststements are authorised for AT Society Trustees, Report and Accounts 2024
Independent auditor's report 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: Adequate accounting records have not been kept or returns adequate for our audit have not been received from branches not visited by us; or The financial statements are not in agreement with the accounting records and returns; or Certain disclosures of trustees, remuneration specified by law are not made; or We have not received all the information and explanations we require for our audit; or The trustees were not entitled to take advantage of the small companies exemption from the requirement to prepare a Strategic Report or in preparing the Report of the Trustees. 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, includin9 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 non- compliance 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: 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. Performing analytical procedures to identify unusual or unexpected transactions Assessing whether judgements and assumptions made in determining accounting estimates were indicative of potential bias Reviewed a sample of transactions from the client's records for proper authorisation Performing completeness of income tests Test checking the appropriateness of journal entries Agreeing financial statement disclosures to the underlying supportin9 documentation Checking for correspondence with the Charity Commission Reading the minutes of Trustees, meetings Checking for any actual and potential litigation and claims including inspecting legal costs. Our responsibilities for the audit of the financial statements Our objertives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misststement, 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 IUIQ will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are AT Society Trustees. Report and Accounts 2024 10
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. 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. We are not responsible for preventing non- compliance 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 Reportin9 Council's website at wMv.frc.org.uk/auditorsresponsibilities. This description forms part of our Report of the Independent Auditors. Phili Dea Senior atutory Auditor For and on behalf of Hicks and Company Chartered Accountants and Statutory Auditor Vaughan Chambers Vaughan Road Harpenden Hertfordshire AL5 4EE 19 May 2025 AT Society Trust•es' R8port and Accounts 2024 11
Statement OF financial actLVlties I rai riivrv a'1 Drceiiivri 2024 Unrestricted funds Restricted Total funds funds 2024 Total funds 2023 Notes Income and endowments from: Donations and legacies Charitsble activities Welfare Other trading activities Investment income Totsl 391,471 248,510 639.981 454.711 3,200 3,200 435 14,396 1,385 7,845 478.337 435 13,875 405,781 13.875 657,491 251,710 Expenditure on: Raising funds Charitable activities Research Clinic Welfare Information Education Governance Total 145,354 145.354 147.711 74.337 41,131 23,039 32,870 24,580 33,147 374,458 22,801 62,894 107,602 4,153 97.138 104,025 130.641 37.023 24,580 33,147 571,908 183,749 97,671 138,035 34,351 23,096 37,980 662,593 197,450 Net incomo1loxpenditure) Reconciliation of funds Total funds brought forward Transfers between funds Total funds carried forward 31,323 54,260 85,583 1184,256) 303,301 70,120 404.744 96,432 {70,120} 80,572 399,733 583,989 485,316 399,733 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. AT Society Trustees, Report and Accounts 2024 12
Statement of Financial position Unrestricted funds Restricted Total funds funds 31.12.24 Total funds 31.12.23 Notes Fixed assets Tangible assets 14 1,614 1.614 1.722 Current assets Debtors Cash at bank 15 125,372 294,145 419,517 19,143 138.487 157,630 144,515 432,632 577.147 15,829 444,650 460.479 Creditors; Amounts fallin9 due within one year Net current assets Total asset$ less current liabilities Net assets 116,3871 403,130 404.744 404,744 (77,0581 80,572 80,572 80,572 {93,4451 483,702 485.316 485,316 162.4681 398,011 399,733 399,733 Fund5: Unrestricted funds Restricted funds Total funds 19 404,744 404,744 80.572 485,316 303,301 96,432 399,733 80,572 80,572 404,744 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 19 May 2025 and were signed on its behalf by: David MacDonald Treasurer AT Sou•ty Trustees. Report and Accounts 2024 13
statement of cash Flows Tfal riiv¢J a I vrcenivei" 2024 2024 2023 Notes Cash flows from oporating activities: Cash used in operations Net cash used in operating activities (24,598) (24.598) {121.299) {121,2991 Cash flows from investing activities: Purchase of tangible fixed assets Proceeds from sale of fixed assets Interest received (1.295) 18331 378 7,845 7,390 13,875 12,580 Nat cash used in investing activit¢es Change in cash and cash equivalents in the reporting period Cash and the cash equivalents at the beginning of the reporting perlod Cash and cash equivalent5 at the end of the reporting period (12,018) {113,9091 444,650 558,559 432,632 444,650 Notes to the statement OF cash flows Year •nd•d 31 December 2024 Reconciliation of net income/lexpenditure) to net cash flow from operating activities 2024 2023 Not income/(•xpenditure> for the reporting period as per the ststement of financlal activlti•s Adjustments for: Depreciation charges Profit on sale of fixed assets Interest received (Increase)Idecrease in debtors Increase/ldecreasel in creditors Net cash from operating activities 85.583 {184,2561 1.403 1,079 195) (7,845) 78,309 (8,491) (121,299) (13,875) (128,686) 30.977 (24,5981 AT Society Trustees, Report and Accounts 2024 14
Notes to FinanciaL statements 1. Accounting policies Governance costs include those costs Basi5 of preparing the financial statements associated with meeting the constitutional and The financial statements of the charitable company, statutory requirements of the charity and which is a public benefit entity under FRS 102, have include the audit fees. All costs are allocated been prepared in accordance with the Charities SORP between the expenditure categories of the (FRS 102) 'Accounting and Reporting by Charities: Statement of Financial Activities on a basis Statement of Recommended Practice applicable to designed to reflect the use of the resources. charities preparing their accounts in accordance with Costs relating to a particular activity are the Financial Reporting Standard applicable in the UK allocated directly, other costs are apportioned and Republic of Ireland (FRS102} (effective 1 January on an appropriate basis e.g. estimated usage. 2019),, Financial Reporting Standard 102 'The Leases Financial Reporting Standard applicable in the UK and Rentals payable under operating leases are charged Republic of Ireland, and the Companies Act 2006. The to the Statement of Financial Artivities evenly over financial statements have been prepared under the the period of the lease. historical cost convention. 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. 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: Voluntary income is received by way of grants, donations and gifts. Donations and gifts are included in the Statement of Financial Activities when received. Grants are included when receivable. Grants, where entitlement is conditional on the delivery of a specific performance by the charity, are recognised when the charity becomes unconditionally entitled to them Donated services and facilities are included at the value to the charity where this can be quantified. The value of services provided by volunteers has not been included in these accounts Investment income is included when receivable. Bank interest is included when received Tax refunds {e.g. gift aid) are accounted for when receivable Trading income is accounted for on a receivable basis. Allocation and apportionment of costs Costs have either been directly allocated or have been allocated on the basis of an estimate of timè spent. Tangible fixed assets Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life. 25% on cost 20% on cost Equipment Furniture Taxation The charity is exernpt 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. 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: Costs of generating funds comprise the costs associated with attracting voluntary income Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them AT Society Trustee5' Report and Accounts 2024 15
Notes to Financial statements vrai riTr(Jed 31 oeceniver 2024 2. Donations and Legacies 3. Other tfadin9 actLVlties 2024 2023 2024 2023 Sale of merchandise 435 1,385 Donations Legacies Grants 71,269 180.616 256,514 109,328 22,254 639,981 154,330 4. Investment income 161,447 119,634 19,300 454,711 Fundraising activities Income tax refund Deposit account interest 13.875 7.845 5. Welfare Restricted income from family meetings Restricted income from adult activity breaks 14,396 Grants received, included in the above, are as follows: 3,200 Grants from NCG Grant from Medical Research Council Grants from Trusts 62,894 59,233 3.200 14,396 70,120 17,356 6. Raisin9 funds 123,500 256.514 84,858 161,447 Staff costs Event support, publicity and literature Merchandise Other direct costs Support costs allocated to activities 98,777 91,701 4,667 13,086 499 2,149 12,399 11,003 30,408 28,376 145,354 147,711 7. Charitable actLVities costs Research Clinic Welfare Information EducationGovernance 2024 Total 2023 Total Costs directly allocated to artivities Staff costs Newsletter Welfare. equipment, respite etc. Research costs and conference Clinic costs 15,084 54,729 68,995 139 29.217 139 19,203 20,524 207,752 278 197,031 340 17.401 17,401 36,561 19,020 19,020 25,821 37,059 37.059 33.162 Event support. publicity and literature Other direct costs Grant fundlng of activities 368 368 257 7,614 7.614 13,776 59,994 27,670 87,664 159.907 Support costs allocated to activities 3,040 12,237 16,436 7,299 5,377 5,009 49.398 48.027 97.138 104.025 130.641 37.023 24,580 33,147 426,554 514,882 AT Society Trustees. Report and Accounts 2024 16
- Analysis OF grants
- Net income 2024 2023 Net incomel(expenditure} is stated after charging: Grants to institutions Grants to individuals 59.994 27,670 87.664 140.160 19,747 159,907 2024 2023 Auditors, remuneration Depreciation owned assets Operating lease rentals land and buildings Operating lease rentsls equipment 5.400 5.040 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. 1.403 1.079 27,750 27,288 The following grants to institutions have been made in the year: 5,866 5,866 Modulation of RELB/p52 - dependent NF-kB activities to improve neurodegenerative symptoms of AT Joint funding of 3 research projects. (6) 60.000 59.994 R•s•arch projècts fundèd.. 11 Inv•stigating th• rol• of mutant Tripl• T hap¢rtsn in ATM assombly in Ataxia T•langi•etasia.' A structural perspective, 21 Identifying existin9 drug5 to rgpurpo5¢ for Ataxia T•langiectasia, 31 Biomarkers for Babies and Young Children with Ataxia T•langi•ctasi
- Operatin9 lease commitments The charity's total future minimum lease payments under non cancellable operatin9 leases are as follows for each of the periods: Land & buildings Equipment 2023 2024 2024 2023 Less than one year Two to five years More than five years 27,792 4,632 5,392 4,780 5,866 10,172 32,424 10,172 16,038
- Trustees, remuneration and beneFits No member of the Board of Trustees received any remuneration during the year (2023: £Nill. Trustees. expenses Travel expenses of £Nil were reimbursed during the year12023: £Nil}.
- StaFF costs 2024 2023 Salaries Social security costs Pension provision 269,992 20.961 15.576 306,529 255,372 19.153 14,207 288.732 No employee had emoluments in excess of £60,000 (2023: none). AT Soclety Truste•s' Report and Accounts 2024 17
Notes to financiaL statements Yto( riiurv 31 December 2024 12. Staff costs (continued) During the year the Society paid £59,040 in employee benefits to key management personnel for their services to the charity (2023: £57,141) and employed the equivalent of 7 full-time staff (2023: 7 E). The Society 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 Society and amounted to £13,500 (2023: £12,821 }. 13. Comparatives For the statement OF Financial actLVlties Unrestricted Restricted Total funds funds 2023 funds 2023 2023 14. TangibLe Fixed assets Equipment Furniture Totsl Cost At 1 January 2024 Additions At 31 December 2024 18,537 1,295 4,472 23.009 1,295 19,832 4.472 24,304 Depreciation At 1 January 2024 Charge for the year At 31 Do¢•mb•r 2024 17,333 3,954 21,287 885 518 1,403 18,218 4,472 22,690 Not book value at 31 December 2024 At 31 December 2023 Income and •ndowm•nts from: Donations and le9acies Charltabl• artivitios: Welfare Other trading Investment income 1,614 1,614 280,293 174,418 454,711 1,204 518 1,722 14,396 14,396 1,385 7,845 478,337 1,385 7,845 289,523 15. Debtors: amounts FaLLin9 due within one year 188,814 Expenditur• on: Raising funds Charitabl• activities: Research Clinic Welfare Information Education Governance 31.12.24 31.12.23 147,711 147.711 Tradè dèbtors Pre payments and accrued income Other debtors 15,925 5,240 149,379 38,438 9,376 32,851 23,096 37,980 438.831 34,370 59,233 128,659 1,500 183,749 97,671 138,035 34,351 23,096 37,980 662,593 125,495 7,696 3,095 144,51 S 2.893 15.829 Other debtors include an office lease deposit of £2,895 which falls due in more than one year. 223,762 N•t movement In funds Reconciliation of funds Total funds brought forward Gross transfers between funds Total funds carried forward (149,3081 {34,948) 1184,256) 16. Contingent asset A residual legacy was left to the AT Society in 2024. As at the year end the amount bequeathed to the AT Society could not be determined. Subsequent to the year end in April 2025 a sum of £399,206 was received by the charity. 364,843 219,146 583.989 187,7661 87,766 303.301 96,432 399,733 AT Society Trustees. Report and Accounts 2024 18
- Creditors: amounts Falling due within one year
- Movement in Funcls Net Movement in funds 31.12.24 31.12.23 At 1.1.24 At 31.12.24 Support grants payable Institutional grants payable Trade creditors Accruals Deferred accruals Taxation and social security 9,570 60,000 3,116 13.248 1,200 6,311 93,445 2,890 38.973 1,957 12,175 Unrestricted funds General fund Designated research fund 217.790 93.624 311,414 85,511 7,819 93,330 303,301 101,443 404,744 6,473 62.468 Restrict•d funds Research 3,511 Grant funding commitments Support Institutional grants grants Total (11} 3,500 Welfare. support, equipment Information 91,136 (14,196) 76,940 Grant liability at 1 January 2024 Grants expense in the year Grants paid in the year Grant liability at 31 December 2024 1,785 96,432 399,733 11,653) (15.8601 80,572 85,583 485,316 132 2,890 38,973 41,863 Total funds 27,670 59,994 87,664 (20,990> {38,967) {59,957} 9.570 60.000 69,570
- Contin9ent liabilities Total funds Research grant funding Total funds Natural History of Ataxia-Telangiectasia Statistics Consultancy 3,500 3,500 3,500 3,500 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. AT Society Trustee$. R8port and Account$ 2024 19
Statement of Financial actLVlties Teijr eiiueu J I VEL¥IIIV¢I £V£4 19. Movement in funds (continued) Incomin9 resources Resources expended Transfers inl(outl Movement in funds Unrestricted General fund Designated research fund un 405,781 (312,1571 162,3011 (374,4581 93,624 7,819 101,443 70.120 70,120 405,781 Restricted funds Research Clinic costs Welfare. support, equipment Information 92,910 62,894 93,406 2,500 251.710 657.491 (22.801} (62,894) (107,6021 (4,1531 {197,450) {571,908) (70,120) (11) (14,1961 11.653) 115,860) 85.583 170,120) Total funds Purpose of restricted funds Research Restricted research income relates primarily to a grant received from the Medical Research Council to fund research projects. 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 family 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 stsff. 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 2024, £62,301 (2023: £123,244) has been spent from this fund on research. A transfer of £70,120 has been made back to unrestricted designated reserves from restricted reserves 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 remainin9 designated funds will be spent in 2025. 20. ReLated pafty 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 durin9 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 controllin9 paty 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 ofPice address can be found on the facing page. AT Society Trustoes. Report and Account$ 2024 20
Reference and Administration Details The working name for The Ataxia Telangiectasia Society is the AT Society. The reference and administrative details, trustees and advisers are listed below. Dr Jayesh Bhatt Michael Detsiny Chai r of Trustees Nicholas Gull Professor Penny Jeggo David Macdonald Treasurer Ji. Joe Pemberton- Powel Rachel Poupard Jhilna Shah Lian Yarlett Seci'etary Seni Susie Norbury Directoi of Fundraising & Operations Kay Atkins Head of Services V.LSOry Professor Rob Dineen Cliciir Professor Jessica Downs Dr Julie Greenfield Dr Anke Hensiek Dr Rita Horvath Dr Winnie Ip Professor Penny Jeggo Dr Svetlana Khorenkova Professor Laurence Pearl Erik Thomassen Dr William whtehOuse Our Scienti*ic Advisory Board voluntarily provides expert, independent advice on AT research priorities tc Drs Rita Horvath and Anke Hensiek Cli,Iirs Emily Barker Dr Madhu Dandapani Professor Rob Dineen Professor Penny Jeggo Natasha Schneider Dr William Whitehouse Patr Mrs Joan Bartholomew, The Lord Bilimoria of Chelsea CBE DL The Lady Parkinson DL The Revd Canon Paul Thomas OBE 'MiS Joan Bariholoiiiew sadly died In Mai ch 2024, wè ale Banke The Co-operative Bank PO Box 250 Skelmersdale WN8 6WT udit ffice/ operatlona Hicks & Company Chartered Accountants Statutory Auditors Vaughan Chambers Vaughan Road Harpenden Herts AL5 4EE AT Society Unit 54 Thra1es End Business Centre Thrales End Lane Harpenden Hertfordshire AL5 3NS HSBC Bank plc 1 High Street Harpenden Herts AL5 2RS Email.. info@atsociety.org.uk Website.. www.atsociety.org.uk Company Registered in England and Wales, Number". 5177145 CAF Bank Ltd PO Box 289 West Malling Kent ME19 4TA Charity Commission Registered in England, Number.. 1105528
280/0 "I don't know how we would get thfOU9h this without the AT Society" 95 increase in chtldfen and adults with AT accesstng specialist medical SUPPOft children and adults WLth AT attended AT specialist medical clinics throughout the year 50/0 400/0 930/0 incfease in new dia9nosis in the year of emergency support 9fants helped alleviate the cost of Living crisis OF parents attendin9 the AT specialist medical clinics for children Found them very useful '1 feel less isolated and lonely now.I've never met anyone with AT before and I've made good ffiends from this event." 2000+ "The bi99est diffefence this weekend made fof me was watchin9 all the youn9 adults having fun, smilin9 and intefactin9 . hours of mental health support over the year 235 1000/0 people with AT in the UK supported in 2024 OF parents said the advice and support received to èddfess their housin9, benefits, and education needs was 'extremely helpFul' new medical research projects funded through the yeaf How we chan9ed lives in 2024 AT50CIETY.ORG.UK *Ataxia Telan9iectasia IAT society Unit 54 Thrales End Business Centre Thrales End Lane Harpenden Hertfordshire AL5 3NS 01582 760733 info@atsociety.org.uk www.atsociety.org.uk Reglstered wlth FR FUNDRAISING REGULATOR Reg. Charity No. 1105528 Reg. Company No. 5177145 amrc