Company registration number. 3557191 Charity registration number- 1071196 Alstrom Syndrome UK (A company limited by guarantee) Annual Report and Fin8ncial Statements for the Year Ended 31 March 2024 WESTCOTTS HAR TERED ACCOSJNTANTS 8 OUSINESS AOVtSÉA$
Alstrom Syndrome UK Reference and Administrative Details Trustees: Prof Timothy Barrett Sharon Bates Jane Biglin Melissa Crowland {resigned 31 March 2024) Haris Hamid Tarekegn Hiwot Alexandra Line (appointed 1 April 2024} Richard Paisey {resigned 22 November 20231 Trevor Parkin (appointed 21 June 2023) Carol Prescott Katie Stadden (resigned 25 October 2023) Mathilde Yates Charlty Reglstratlon Number 1071196 Company Registratlon Number 3557191 The charity is incorporated in England & Wales. 4 St Kitts Close Torquay Devon TQ2 7GD We5tcotts (SWI LLP 47 Boutport Street Barnstaple Devon EX311SQ Reglstered Office Independent Examiner Page 1
Alstrom Syndrome UK Trustees. Report The trustees, who are directors for the purposes of company law, present the annual report together with the financial statements of the charitable company for the year ended 31 March 2024. STRUCTURE, GOVERNANCE AND MANAGEMENT Governlng Document The organisation is a charitable company, limited by guarantee, incorporated on 1st May 1998 and registered as a charity in the UK on 25th August 1998. The company was established under a memorandum of association which estsblished the objectives and powers of the charitable company and is governed under its articles of association. Recrultment and Appolntment of Trustees New Trustees are appointed by the existing Trustees and serve for three years after which they may put themselves fOard for re-appointment. Trustees can serve a maximum of three terms of three years, a total of nine years at which point they must resign from the board. They can serve on an Alstrom Syndrome UK {ASUKI patient advisory or project group after this. If a vacancy becomes available, they may apply to re-join the Board after 2 period of 12 months. The Board actively recruit those who are directly affected by Alstrom Syndrome (ASI and family members, ensuring that the charity remains patient led and those with lived experience remain at the heart of the work of the charity. Inductlon and Trainlng of Tru8teo8 New Trustees are given a copy of the memorandum and articles of association and are given copies of the Charity Commission guidance "The Essential Trustee. What you need to know, what you need to do" as well as links to the Charity Commission and Government website outlining the responsibilities of the Trustee role, New Trustees have a six-month induction period during which they can be assigned a Trustee mentor who can provide advice and 9uidance. New Trus',ees receive an induction pack containing key information to gain a further understanding of ASUK and its, strategic priorities, and an opportunity to observe at a board meeting. They are invited to meet with the Board of Trustees, the Chief Executive and the staff team as well as patients and their families. ASUK Board of Trustees Richard Paisey, appointed on 7th February 2015, retired on 22nd November 2023 Sharon Bates, appointed on 2nd November 2019 Tim Barrett, appointed on 2nd November 2019 Melissa Crowland, appointed on 2rsd November 2019, retired on 31 st March 2024 Haris Hamid, appointed on 9th March 2022 Carol Prescott, appointed on 9th March 2022 Jane Biglin, appointed on 18th July 2022 Mathilde Yates, appointed on 18th July 2022 Katie Staddon, appointecl on 22nd March 2023, retired on 25th October 2023 Trevor Parkin, appointed on 21 st June 2023 Tarekegn Hiwot, appointed on 23rd November 2023 Page 2
Alstrom Syndrome UK Trustees. Report OBJECTIVES AND ACTIVITIES Public benefit Objectives and activities Purposes and aims ASUK'S objectives, as set out in the company's memorandum of associatlon, are., The relief of sickness of persons with Alstrom Syndrome, in particular, but not exclusively by the provision of support, advice and infofmation for such persons, their families, carers and those working with affected individuals. The promotion of research into Alstrom Syndrome and related syndromes in the UK and abroad and the public dissemination of the useful results thereof. ACHIEVEMENTS AND PERFORMANCE Alstrom Syndrome UK IASUK} has a skilled and experienced team including a Board of Trustees, Volunteers, Chief Executive, Global Executive Director, Finance Manager, Office Manager, 2 Care Coordinators, Transition Coordinator, Community Inclusion Coordinator, Community Outreach Coordinator, Patient and Public Involvement & Engagement Coordinator and a Wellbeing Coordinator. In May 2023, ASUK celebrated our 25th anniversary and we took the time to reflect on how far the charity has developed over the years. We are proud of all that we have achieved and will always be forever grateful to the families, professionals, funders and collaborators that have supported us along the way. The health and wellbeing of people living with Alstrom Syndrome (AS) will always remain at the heart of everything we do. The Family Support Team provides a flexible and inclusive package of support for individuals and families living with AS. We have a diverse population with families speaking 17 different languages. On the 31st March 2024, there were 91 people diagnosed with AS in the UK,. 54 {590/0l were born male, 37 {410/ol born female and 501550/018re from an ethnic minority community. We are supporting small number of refugees who do not have settled status in the UK, living in temporary accommodation. The team has found creative ways to engage with families using a variety of methods and have developed positive relationships. We continue to support the highly specialised clinics and liaise with professionals. We contribute to Education Health and Care Plans, social care assessments, child in need meetings, safeguarding meetings and support families to request specialist services in their local area. Care Coordinalors are carrying out home visits in person when needed and engaging with families online and over the phone. We are facilitating peer to peer support and online group sessions. Engagement with farnilies has increased further this year with the introduction of our new Wellbeing Pilot Project. In July 2023, we introduced the Wellbeing Pilot Project to explore the mental health and wellbeing needs of the AS community. The pilot was delivered by Melissa Crowland who is a qualified Social Worker and Humanistic Therapist. Melissa also has lived experience and has a diagnosis of AS. A summary of the consultations and findings of this pilot study was presented to the ASUK Board of Trustees in March 2024. The decision was made tD embed the project within the Family Support Service from 1 st April 2024. We continue to work in partnership with Bimiingham Women's and Children's Hospital IBWCHI and the Queen Elizabeth Hospital, Bimingham (QEH) to deliver highly specialised mtjlti-disciplinary clinics. B WCH have received additional funding this year to add an additional 2 virtual clinics per year to help with capacity. ASUK Care Coordinators attend every AS clinic to offer support. Page 3
Alstrom Syndrome UK Trustees. Report AS Highly Specialised Clinics during 2023-2024 Paediatrlc Clinics- Blmiingham Women's & Children's H05Pital 2 Virtual Clinics 4 In-Person Clinics IBWCHI 1 Outreach Clinic (St James's Hospital, Leeds) Adult Clinics- Queen Elizabeth Hospital, Birmingham 6 In-Person Clinics Additional Outpatient Appointments 3 young adults transferred from BWCH to QEH During the year we received 4 new referrals aged 3, 12, 16 and 27 years. One person sadly passed away, aged 23. We continue to support bereaved families and the AS community as best we can. Losing a member of the AS community is devastating and impacts on everyone. We continue to provide emotional and practical support and there has been a significant increase in the demand on our services due to the cost-of-living crisis. We provide advice on benefits, provide access to grants, contribute to education and social care assessments, and liaise beeen individuals, parents, carers, and local and specialist service providers. Through our grants programmes we have been able to provide a range of different exercise equipment and fund outdoor activities to support people to remain as active as possible. We have also provided cost of living grants and equipment to support daily living. We have provided funding through our Adult Empowerment grants for those over 18 years to visit new places of interest and to challenge themselves to try new activities and develop independence. It ha5 been lovely to see people venturing abroad again and taking part In new adventures. We continue to work with local authorities and different charities to identify opportunities for families to access short breaks, cost-of-living grants and emergency essential food and equipment. In April 2023, we organised a residential weekend to Whitemoor Lakes, which was a huge success. 9 young people with AS attended with their parents, siblings and carers and were supported by ASUK staff, trustees and volunteers. The weekend was packed full of fun and exciting things to do including canoeing, abseiling, zip wire, challenge course, carnpfire, games, arts and crafts, plus birthday and anniversary celebrations. We also had a visit from the animal man who brought along a range of animals for families to meet and feel - including a life size interactive dinosaurl The activity wa5 mainly funded through our Children in Need grant with additional funding allocated from general funds. A residential weekend for young people under the age of 8 is planned for April 2024. A huge thank you to Children in Need for providing funding that allows us to run residentials plus other activities, events and exciting opportunities for young people such as driving a car and flying an aeroplanel The ASUK Culture Family Forum continue to meet regularly online and invite guests to discuss specific topics. This year they have interviewed our Chair of Trustees and following feedback, we have introduced a new Trustees of the Future Training Programme that we plan to roll out in September 2024. They have also provided advice and helped with the planning of the ASUK conference which will take place in West Bromwich in October 2024. Members of the Culture Family Forum and other young people, adults, parents and carers will have a much more active role in the conference a5 they will be interviewing clinicians and researchers about the things that are important to them. Page 4
Alstrom Syndrome UK Trustees. Report We have been raising awareness of AS and sharing information about the condition and the support we offer as an organisation. Information is shared through our ASUK and Breaking Down Barriers (BDBI websites, newsletters, email circulations, over the telephone and via social media platforms. We also take part in event5 throughout the rare disease community and sit on various committees and steering groups. During the year we had 108.357 visits to the ASUK website with 67,083 unique visitors. We reached 10,440 people on the ASUK Facebook page and had 24,594 impressions on X (previously Twitter). We continue to work internationally through AS Global. We have run 7 webinars throughout the year for patients, parents, carers and professionals. Webinars are recorded and added to the ASUK website with top tips and links to further information and resources. We held a virtual conference in January 2024 which included 55 attendees from 16 countries. We provided 1 AS Lecture and 1 heart series podcast. We have people from over 100 countries visiting the AS Global page each month. The BDB neOrk has now grown to over 70 organisations providing support to people affected by rare and genetic conditions. We work together to learn, develop, and share good practice. Promoting equity, diversity and inclusion is at the centre of what we do. Our Experts by Experience Advisory Group help us to understand the lived experiences of people from diverse, marginalised and underserved communities who are affected by rare and genetic conditions. We create safe spaces for learning and collaboration, deliver training and run a community outreach proiect. We unite and strive for equitable access to services and support for all. During the year we had 112,196 visits to the BDB website with 3,537 unique visitors. We had 46,458 impressions on the BDB X account (previously Twitter). Following on from last year, we continued our partnership with the Department of Health & Social Care to run another focus group to understand the health inequalities experienced by people from diverse and marginalised communities who are also affected by a rare condition. Findings from these focus groups are fed into England's Rare Diseases Action Plan that is published on Rare Disease Day. With the support of the BDB Experts by Experience Advisory Group and our youth and young adult advisors, we updated T-KASH (Transition Knowledge And Skills in Healthcare). We have created brand new resources, including an animation that is being used throughout the BDB nelmork and beyond. These resources were launched in September 2023, and we have received excellent feedback. The T-KASH resource5 were originally created in 2015 by young people from the ASUK, Hear My Voice Youth Forum. These free resource5 are designed to 5UPPOrt young people, families and healthcare professionals, to help everyone understand the transitlon journey and the things that are important to young people as they grow up. At the end of 2022, we began the process of updating the T-KASH resources to ensure they are inclusive and represent the diverse needs of young people within the rare disease community. A huge thank you to Contact and The Pears Foundation for funding this work. We have continued to wort( more broadly within the rare disease community, in the UK and beyond. We recognise that as a small organisation, we are much stronger when working together with other organisations. Embedding the diverse views of people with lived experience is essential in all that we do. Research AS research is happening around the UK in pockets, including in Edinburgh, Bimiingham and at Keele University. We will be asking researchers to provide an update at the ASUK conference in October 2024. We will 8150 request updates from members of the Medical and Scientific Advisory group. Page 5
Alstrom Syndrome UK Trustees. Report There has been a significant investment in rare disease research, and we are pleased to be part of various successful funding applications for research projects funded by LifeArc, the National Institute for Health and Care Research, the Medical Research Council and Genomics England. We will be supporting patient and public involvement and engagement for a centre to accelerate clinical trials for people living with rare conditions, a project looking at clinical trial designs, the evaluation of The Generation Study and the evaluation of the UK Rare Diseases Framework. In December 2023 we were a150 successful with a bid to Genomics England to support them to develop a project on Equity in Health Research. Key Achlevements and Performance During the year we.. Maintained our record of 100'/• attendance al clinics Continued to work with the hospital teams to review and improve the clinics based on patient needs, evaluation and feedback Provided support and information to newly diagnosed individuals, families and the professionals working with them Facilitated online groups for young people and adults to meet and offer peer to peer support Provided 21 small grants to empower people to exercise and develop independence and to support with the cost of living Provided 4 Adult Empowerment grants for adults to visit new places of interest or to try a new activity Provided virtual and face-to-face activities and events Encouraged healthy lifestyles through information, support and global webinars Increased the BDB Neork to over 70 organisations Delivered Equity, Diversity and Inclusion training events for the BDB neOrk Developed new global connections and established partnerships Encouraged worldwlde completion of the Patient Registry Hosted a Global Alstrom Conference with SS attendees from 16 different countries bringing together the Alstrom community from around the world Attended the ASI conference in Baltimore, USA and collaborated with AS Intemational, Italy and Germany to help deepen ties with AS organisations and people with lived experience worldwide Improved communications & increased our reach - the ASUK website had 108,357 views Increased awareness and extended our reach using multimedia communication channels Delivered 6 presentations about AS, ASUK and BDB - including presentations at the Medics for Rare Diseases Communication and Inclusivity Conference and the Rare Disease Research UK conference Active engagement in successful rare disease research funding applications Provided the secretariat for Alstrom Europe {ASEU) Demonstrated effective cost control Acted prudently and resourcefully to ensure we control expenditure and make the most of income and donations Supported the ASUK team Page 6
Alstrom Syndrome UK Trustees. Report Future aims The Board of ASUK is committed to contSnuing cur grants programme and to provide support, activities, equipment and events for children, young people, adults, families and carers. We are looking forward to bringing everyone together again at the ASUK conference in October 2024. This will be the first in person conference since the pandemic. We will take the opportunity to share information, listen to and learn from the AS community. We will use the information we gather to develop our new strategy, making sure our work continues to be driven by the needs of people with lived experience. We are excited be part of new rare disease research initiatives and look forward to Seeing how each project develops. Having an active role in rare disease research creates opportunities to further our knowledge and hopefully improve health outcomes for people living with AS. BDB is helping us to have more of an active role in research, make new connections and enabling us to forge new collaborations. We will continue to work collaboratively with the UK and international community through ASEU, AS Global and BDB. We will continue to strengthen our governance to have an effective and proactive Board. We will invest 8nd care for our staff team and each other to develop skills, abilities and resilien. Chalr's Revlew The charity has had a successful year maintaining its financial sustainability and being involved in ongoing support to the community and developing new projects. We have recruited 1 new Trustee Tarek Hiwot. who compliments the Board members who provide a diverse range of experience and knowledge to the charity. Melissa Crowland left the Board to become a member of staff to lead our new health and wellbeing part of the charity. We continue to offer both emotional and practical support to individuals and families. Including support at hospital clinics, group sessions and small financial grants. The BDB membership continues to grow and we are involved with training, research and patient and public involvement. Our engagement with research projects is increasing and we are able to offer our unique input and knowledge to a variety of work. Our amazing team of staff continue to provide an outstanding seNice and work together in a way that puts the Alstrom community at the centre of everything they do. We had a very successful global conference with representation from across the UK and many countries aGfos5 the world it was a great opportunity to share learning and knowledge. Our programme of global webinars, liaison with the other AS organisations worldwide, and attendance at international events has helped build and strengthen relationships across the global community. The charity goes from strength to strength and I would like to take this opportunity to thank the Chief Executive and all of the Board members for their tireless work and commitment to our community and the team at ASUK who are a pleasure to work with. Page 7
Alstrom Syndrome UK Trustees, Report Finally, may I say a heartfelt thank you to our community and supporters for your contribution., raising funds and awareness of this ultra-rare condition that is Alstrom Syndrome. Regards Sharon Bates Chair of the Board of Alstrtim Syndrome UK Flnanclal Review The General Fund had a surplus of £4,521 and stands at £202,10612023 £197,585). The Trustees hold various designated and restricted funds, which are described in more detail in the next section. The Trustees made grants of £6,549 from the Financial Assistance Grant Fund and £2,000 from the Adult Empowerment Grant Fund. The Trustees hold total designated funds of £45,84212023 £56,293) The restricted funds stand at £43,611 {2023 £24,000). Reserves Pollcy and Golng Concern The Trustees review the level of reserves on a regular basis to maintain the appropriate levels after considering the main risks to the organisation and future developments. The following designated reserves are held at the year-end.. Financial Assistance Grant Fund £8,038 - Amount set aside to provide financial support to AS patients, and their families based upon an assessment of need. Adult Empowerment Grant Fund £15,618 - Amount set aside to enable and empower adults with AS, to be used for a variety of activities that improve their ability to self-advocate, to meet up with other adults and try something new. Funds may also be used to improve communication and confidence for adults with AS. Research Fund £20,000 - Amount set aside to fund research into AS. Fixed Assets Fund £2,186 unless the assets are sold. represent the fixed assets and cannot be used to fund expenditure The remaining reserves of £202,106 are held in the General Fund. The Trustees have reviewed the circumstances of the charity and consider that adequate resources continue to be available to fund its activities for the foreseeable future. The Trustees are of the view that the charity is a going concern. Management of Risk The Trustees have identified that the main risks to the charity are.. The loss of key personnel The loss of the NHS England clinic contract Failing to secure sufficient funds The Trustees monitor and actively manage the risks through quarterly reports and regular updates with staff. Page 8
Alstrom Syndrome UK Trustees, Report Statement of trustees, responsibilities The trustees (who are also the directors of Alstrom Syndrome UK for the purposes of company law} are responsible for preparlng the trustees, report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice), including FRS 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland The report and accounts have been prepared in accordance with the provisions in the Companies Act 2006 relating to small companies. Company law requires the trustees to prepare financial statements for each financial year. Under company law the trustees must not approve the financial ststements unless they are satisfied that they give a true and fair view of the state of affairs of the charitable company and of the incoming resource5 and application of resources, including its income and expenditure, of the charitable company for that period. In preparing these flnancial ststements, the trustees are requirecl to.. select suitable accounting policies and apply them consistently., observe the methods and principles in the Charities SORP; make judgements and estimates that are reasonable and prudent; stste whether applicable accounting standards, comprising FRS 102 have been followed, subject to any material departures disclosed and explained in the financial statements,. and prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in business. The trustees are responsible for keeping proper accounting records that can disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company's website. Legislation governing the preparation and dissemination of financial statements may differ frorn legislation in other jurisdictions. Small companies provlslon statement This report has been prepared in accordance with the small companies regime under the Companies Act 2006. The annual report was approved by the trustees of the charity on 4th December 2024 and signed on its Sharon Bates Trustee Page 9
Alstrom Syndrome UK Independent Examiner's Report to the trustees of Alstrom Syndrome UK {'the Company.) I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 March 2024. Responslbllltles and basls of report As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act,). Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under section 145 of the Charities Act 2011 I'the 2011 Act'l. In carrying out my examination I have followed the Directlons given by the Charity Commission under section 145151{bl of the 2011 Act. Independent examlner's statemgnt Since the Company's gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that l am qualified to undertake the examination because l am a member of ICAEW, which is one of the listed bodies. I have completed my examination. I confirm that no matters have come to my attention in connection wittt the examination giving me cause to belleve.. 1. accounting records were not kept in respect of Alstrom Syndrome UK as required by section 386 of the 2006 Act; or 2. the accounts do not accord with those records; cr 3. the accounts do not comply with the accounting requirements of section 396 of the 2006 Act other than any requirement that the accounts give a 'true and fair view, which Is not a matter considered as part of an independent examination., or 4. the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Catherine Williams FCA DChA Westcott5 ISWI LLP Independent Examiner 47 Boutport Street Bamstaple Devon EX31 1SQ Date.. Page 10
Alstrom Syndrome UK Statement of Financial Activities for the Year Ended 31 March 2024 (Including Income and Expenditure Account and Statement of Total Recognised Gains and Losses) Unrestrictgd funds Restrlcted funds Total 2024 Total 2023 Note Income and Endowments from: Donations and legacies Charitable activities Investment income 3,976 202,563 2.627 3,976 348,063 2,627 3,712 366,290 766 145,500 Total income 209.166 145,500 354,666 370,768 Expenditure on: Raising funds Charitable activities {2161 214,880 (216) 340,769 (2161 364,620 125,889 Total expenditure 215,096 125,889 340,985 364,836 Net {expenditure)/income Net movement in funds 5,930 19,611 13,681 {5,930) 19,611 13,681 5,932 Reconclllatlon of funds Total funds brought forward Total funds carried forward 20 253,878 24.000 277,878 271,946 247,948 43,611 291,559 277,878 All of the charity's activities derive from continuing operations during the above periods. The funds breakdown for 2023 is shown in note 20. The notes on pages 13 to 24 form an integral part of these financial statements. Page11
Alstrom Syndrome UK (Registration number: 3557191) Balance Sheet as at 31 March 2024 2024 2023 Note Flxed assets Tangible assets Current assets Debtors Investments Cash at bank and in hand 14 2,186 4,088 15 16 17 42,071 85.000 194,981 322,052 38,613 85,000 171,612 295,225 Credltors: Amounts falllng due wlthin one year Net currènt assets 18 32.679 21,435 289,373 273,790 Net assets 291,559 277.878 Funds of tho charlty: Re8trlcted Income funds Restricted funds 43,611 24,000 Unrestrlcted Income funds Unrestricted funds 247,948 253,878 277,878 Total funds 20 291,559 For the financial year ending 31 March 2024 the charity was entitled to exemptlon from audlt under section 477 of the Companies Act 2006 relating to small companies. Directors, responsibilities.. The members have not required the charity to obtain an audit of its accounts for the year in question in accordance with section 476., and The directors acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and the preparation of accounts. These financial statements have been prepared in accordance with the special provisions relating to companies subject to the small companies regime within Part 15 of the Companies Act 2006. The financial statements on pages 11 to 24 were approved by the trustees, and authorised for issue on 4th December 2024 and signed on their behalf by.. Sharon Bates Trustee The notes on pages 13 to 24 forrn an integral part of these financial sL9tementS. Page 12
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 1 Charity status The charity is limited by guarantee, incorporated in England & Wales, and consequently does not have share capital. Each of the members is liable to contribute an amount not exceeding £10 towards the assets of the charity in the event of liquidation. The address of its registered office Is.. 4 St Kitts Close Torquay Devon TQ2 7GD 2 Accounting pollcle8 Summary of slgnlflcant accountlng pollcles and key accountlng estlmates The principal accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied to all the years presented, unless otherwise stated. Statement of complianc• The financial statements have been prepared in accordance with 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 10211 (issued in October 20191- (Charities SORP {FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland {FRS 102) and the Companies Act 2006. Basis of preparatlon Alstrom Syndrome UK meet5 the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy notes. The financial statements are prepared in sterling which is the functional currency of the charity. Going concern The trustees consider that there are no material uncertainties about the charity's ability to continue as a going concern nor any significant areas of uncertainty that affect the carrying value of assets held by the charity. Exemptlon from preparing a cash flow statement The charity opted to adopt Bulletin 1 published on 2 February 2016 and have therefore not included cash flow statement in these financial statements. Income and endowments All income is recognised once the charity has entitlement to the income, it 15 probable that the income will be received and the amount of the income receivable can be measured reliably. Page 13
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 Donations and legacies Donations are recognised when the charity has been notified in writing of both the amount and settlement date. In the event that 2 donation is subject to conditions that require a level of performance by the charity before the charity is entitled to the funds, the income is deferred and not recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly within the control of the charity and it is probable that these conditions will be fulfilled in the reporting period. Investment income Dividends are recognised once the dividend has been declared and notification has been received of the dividend due. Expendlture All expenditure is recognised once there is a legal or constructive obligation to that expenditure. it IS probable settlement is required and the amount can be measured reliably. All costs are allocated to the applicable expenditure heading that aggregate similar costs to that category. Where costs cannot be directly attributed to particular headings they have been allocated on a ba515 conslstent with the use of resources, with central staff costs allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset's use. Other support costs are allocated based on the spread of staff costs. Ralslng funds These are costs Sncurred in attracting voluntary income, the management of investments and those incurred in trading activities that raise funds. Charitable actlvlties 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. Support costs Support costs include central functions and have been allocated to activity cost categories on a basis consistent with the use of resources, for example, allocating property costs by floor areas, or per capita, staff costs by the time spent and other costs by their usage. Tanglble flxed assets Individual fixed assets costing £250 or more are initially recorded at cost, less any subsequent accumulated depreciation and subsequent accumulated impairment losses. Depreciation and amortlsatlon Depreciation is provided on tangible fixed assets SD as to write off the cost or valuation, less any estimated residual value, over their expected useful economic life as follows: Asset class Computer Equipment Depreciation method and rate 250/0 Straight line Page 14
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 Current assei Investments Current asset investments are included at the lower of cost and net realisable value I market value. Cash and cash equivalents Cash and cash equivalents comprise cash on hand and call dep051ts, and other short-term highly liquid investments that are readily convertible to a known amount of cash and are subject to an insignificant risk of change in value. Fund structure Unrestricted income funds are general funds that are available for use at the trustees discretion in furtherance of the objectlV8s of the charity. Designated funds are unrestricted funds earmarked by the trustees for particular future projects or commitments. Restricted income funds are those donated for use in a particular area or for specific purposes, the use of which is restricted to that area or purpose. Flnancial instruments Classlficatlon Financial assets and financial liabilities are recognised when the charity becomes a party to the contractual provisions of the instrument. Financial liabilities and equity instruments are classified according to the substance of the contractual arrangements entered into. An equity instrument is any contract that evidences a residual interest in the assets of the charity after deducting all of its liabilitie5. Recognition and measurement All financial assets and liabilities are initially measured at transaction price (including transaction costs), except for those financial assets classified as at fair value through profit or loss, which are initially measured at fair value (which is normally the transaction price excluding transaction costs), unless the arrangement constitutes a financing transaction. If an arrangement constitutes a financing transaction, the financial asset or financial liability is measured at the present value of the future payments discounted at a market rate of interest for a similar debt instrument. Financial assets and liabilities are only offset in the statement of financial position when, and only when there exists a legally enforceable right to set off the recognised amounts and the charity intends either to settle on a net basis, or to realise the asset and settle the liability simultaneously. Financial assets are derecognised when and only when a} the contractual rights to the cash flows from the financial asset expire or are settled, bl the charity transfers to another paty substantially all of the risks and rewards of ownership of the financial asset, or cl the charity, despite having retained some, but not all, significant risks and rewards of ownership, has transferred control of the asset to another party. Financial liabilities are derecognised only when the Dbligation specified in the contract is discharged, Cancelled or expires. Page 15
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 3 Income from donations and legacies Unrestrlcted funds Total 2024 Donations General Donations 3,976 3,976 Unrestrlcted lunds Total 2023 Donations General Donations 3,712 3,712 4 Income from charltable actlvltles Unrestrlctod funds Restrlcted fund8 Total 2024 Unrestricted Grants Transition Activities Breaking Down Barriers Pears NHS Commissioning Sundry income 8,000 8,000 24,000 113,000 8,500 180,089 14,474 348,063 24,000 113,000 8,500 180,089 14,474 202,563 145,500 Unrestrlcted funds Restrlcted funds Total 2023 Unrestricted Grants Transition Activities Breaking Down Barriers Pears NHS Commissioning Sundry income 10,000 10,000 22,900 132,415 8,500 171,061 21,414 366,290 22,900 132,415 8,500 171,061 21,414 202,475 163,815 Page16
Alstrom Syndrome UK Notes to the Financial Ststements for the Year Ended 31 March 2024 S Investment income Unrestricted funds Total 2024 Bank interest receivable 2,627 2,627 Unrestricted funds Total 2023 Bank interest rec8ivabl& 766 766 6 Expendlture on ralslng funds Unrestrlcted funds General Total 2024 Costs of ralslng donatlons and legacles Administration costs 216 216 Unrestrlctod funds General Total 2023 Costs of ralslng donatlons and legacies Administration costs 216 216 7 Expenditure on charltable actlvltles Unrestrfcted funds Restrlctod funds Total 2024 NHS Commissioning Transition Activities Breaking Down Barriers Pears Financial Assistance Grant Fund Adult Empowerment Grant fund Fixed assets Support costs 146,539 146,539 19,089 100,660 6,140 6,549 2,000 1,902 57,890 340,769 19,089 100,660 6,140 6,549 2,000 1,902 57,890 214,880 125,889 Page 17
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 Unrestricted funds Restricted funds Total 2023 NHS Commissioning Transition Activities Breaking Down Barriers Pears Family Support Financial Assistance Grant Fund Adult Empowerment Grant fund Fixed assets Support costs 138,072 138,072 26,114 122,683 7,940 3,054 4,990 1,000 1,944 58,823 26,114 122,683 7,940 3,054 4,990 1,000 1,944 58,823 204,829 159,791 364,620 8 Analysis of support costs Support costs allocated to charltable actlvltle¥ Support costs Total 2024 Total 2023 Staff costs Membership fees Sundry expenses Telephone Insurance Accountancy fees Contractors fees Hotels, travelling and subsistence costs Printing, postage, stationery and advertising Conferences 30,083 605 8,747 385 1,203 1,251 6,435 1,543 71 7,567 57,890 30,083 605 8,747 385 1,203 1,251 6,435 1,543 71 7,567 43,275 334 2,669 984 909 1,164 5,990 1,774 624 1,100 58,823 57,890 Page18
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 9 Net incomingloutgoing resources Net incoming resource5 for the year include.. 2024 2023 Depreciation of office equipment 1,902 1,944 10 Trustees remuneration and expense8 No trustees, nor any persons connected with them, have received any remuneration from the charity during the year. During the year, Trustees claimed out of pocket expenses relating to travel and accommodation to attend Trustee meetings, conference and project costs these claims totalled £7,721 (2023 £1,037). Costs have increased 2024 due to a trustee attending the ASI Conference in the USA and expenses connected with the Wellbeing Project. 11 Staff costs The aggregate payroll costs were as follows.. 2024 2023 Staff costs durlng the year were: Wages and salaries Social security costs Pension costs Other staff costs 202,101 13,489 10,195 4,416 206,107 14,574 9,432 4,093 230,201 234,206 The average head count of employees during the year was 8 (2023". 8). The average number of full-time equivalent employees during the year is analy5ed as follows.. 2024 No 2023 No Staff No employee received emoluments of more than £60,000 during the year. Page 19
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 12 Independent examination fees 2024 2023 Independent examination of the financial ststements Other ServIS 2,502 2,328 2,000 2,502 4,328 13 Taxatlon The chan'ty is a registered charity and is therefore exempt from taxation. 14 Tangible flxed assets Computer equipment Cost At 1 April 2023 13,012 At 31 March 2024 Depreclatlon At 1 April 2023 Charge for the year At 31 March 2024 8,924 1,902 10,826 Net book value At 31 March 2024 2,186 At 31 March 2023 4,088 Page 20
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 15 Debtors 2024 2023 Trade debtors Prepayments 18,507 23,564 21,150 17,463 42,071 38,613 16 Current asset Investments 2024 2023 Deposits 85,000 85,000 17 Cash and cash equlvalonts 2024 2023 Cash at bank 194,981 171,612 18 Creditors: amounts falllng due wlthln one year 2024 2023 Trade creditors Other tsxation and social security Accruals 7.765 14,170 10,744 541 13,241 7,653 32,679 21,435 19 Penslon and other Schemes Deflned contribution pension schome The amount recognised in income or expenditure as an expense in relation to defined contribution plans was £10,195 (2023: £9,432). Page 21
Alstrom Syndrome UK Note5 to the Financial Statements for the Year Ended 31 March 2024 20 Funds Balance at Balance at 31 March 2024 Incoming resources Resources expended 2023 Unrestrlcted funds General Funds Financial Assistance Grant Fund Adult Empowerment Grant Fund Fixed Assets Research Fund 197,585 14,587 17,618 4,088 20,000 209,166 (204,645) 16,5491 (2,0001 11,902) 202,106 8,038 15,618 2,186 20,000 253,878 209,166 215,096 247,948 Restricted funds Children in Need Breaking Down Barriers Pears 2,755 20,685 560 24,000 113,000 8,500 145,500 {19,0891 {100,660) 6,140 125,889 7,666 33,025 2,920 24,000 43,611 Total funds 277,878 354,668 340,985 291,559 Balance at 1 Aprll 2022 Balance at 31 March 2023 Incomlng resources Resources expended Unrestrlcted fund8 General Funds Financial Assistance Grant Fund Adult Empowemient Grant Fund Fixed Assets Research Fund 187,743 19,577 18,618 6,032 20,ODO 206,953 (197,1111 {4,990) {1,000) {1,944) 197,585 14.587 17,618 4,088 20,000 251,970 206,953 205,045 253,878 Restrlcted funds Children in Neect Breaking Down Barriers Smaller Restricted Funds Pears 5,969 10,953 3,054 22,900 132,415 (26,1141 (120,447) 13,054) 7,940 2,755 22,921 8,500 560 19,976 163,815 157,555 26,236 Total funds 271,946 370,768 362,600 280,114 Page 22
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 Unrestricted Funds General Fund General funds are donations and other incoming r6sotJrces receivable or generated for the objects of the charity without further specific purpose and which the charity may use for its purpose at its discretion. Financial Assistance Grant Fund Amount set aside to provide financial support to Alstrom patients and their families based upon an assessment of need. Adult Empowerment Grant Fund Amount set aside to enable and empower adults with Alstrom to be used for a variety of activities that improve their ability to self-advocate and to meet up with other adult5. Funds May also be used to improve comrnunication and confidence for adults with Alstrom. Fixed Assets Fixed Assets which cannot be used to fund expenditure without being sold. Research Fund Wording for Research Fund -Amount set aside to fund research into Alstrom Syndrorne. Restrlcted Funds Children In Need Funding towards a Transitions Coordinator, support groups for young people and activities, Breaking down Barriers Funding to facilitate patient organisations and support groups to join together to share examples of good practice and develop new guidelines to highlight effective ways to support families. Pears Enabling our team to meet the unprecedented, increasing demand on our support services. 21 Analys18 of net asset8 bètween funds Unrestrlcted funds General Total funds at 31 March 2024 Restrlcted funds Tangible fixed assets Current assets Current liabilities 2,186 267,774 22,012 2,186 322,052 32,679 54,278 10,667 Total net assets 247,948 43,611 291,559 Page 23
Alstrom Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2024 Unrestricted funds General Total funds at 31 March 2023 Restricted funds Tangible fixed assets Current assets Current liabilities 4,088 265,454 15,664 4,088 295,225 21,435 29,771 5,771 Total net assets 253,878 24,000 277,878 22 Related party transactlons There were no related paty transactions in the year. Page 24