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← Alstrom Syndrome UK

2025-03-31-accounts

Company registration number: 3557191 Charity registration number: 1071196

Alström Syndrome UK

(A company limited by guarantee) Annual Report and Financial Statements for the Year Ended 31 March 2025

Alström Syndrome UK

Reference and Administrative Details

Trustees: Prof Timothy Barrett Sharon Bates Jane Biglin Haris Hamid Tarekegn Hiwot Alexandra Line (appointed 1 April 2024) Trevor Parkin Carol Prescott Mathilde Yates Charity Registration Number 1071196 Company Registration Number 3557191 The charity is incorporated in England & Wales. Registered Office 4 St Kitts Close Torquay Devon TQ2 7GD Independent Examiner Westcotts (SW) LLP 47 Boutport Street Barnstaple Devon EX31 1SQ

Page 1

Alström 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 2025.

STRUCTURE, GOVERNANCE AND MANAGEMENT

Governing 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 established the objectives and powers of the charitable company and is governed under its articles of association.

Recruitment and Appointment of Trustees

The Directors of the company are also charity Trustees for the purpose of charity law.

New Trustees are appointed by the existing Trustees and serve for three years after which they may put themselves forward 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 Alström Syndrome UK (ASUK) patient advisory or project group after this. If a vacancy becomes available, they may apply to re-join the Board after a period of 12 months. The Board actively recruit those who are directly affected by Alström Syndrome (AS) 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.

Induction and Training of Trustees

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 guidance. New Trustees 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

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Alström Syndrome UK

Trustees' Report

OBJECTIVES AND ACTIVITIES

Public benefit

The Trustees have complied with section 4 of the Charities Act 2006 in regard to the public benefit requirement.

Purposes and aims

ASUK’s objectives, as set out in the company's memorandum of association, are;

To promote the health and wellbeing of people with Alström Syndrome - particularly (but not exclusively) through the provision of awareness raising, support, advice and information for people living with Alström Syndrome, their families, carers and those working with them.

ACHIEVEMENTS AND PERFORMANCE

Alström Syndrome UK (ASUK) has a skilled and experienced team including a Board of Trustees, Volunteers, Chief Executive, Finance Manager, Operations Manager, 2 Care Coordinators, Transition Coordinator, Community Inclusion Coordinator, Wellbeing Coordinator and Lived Experience Coordinator.

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 Alström Syndrome (AS) will always remain at the heart of everything we do.

On the 31st March 2025, we know of 94 people diagnosed with AS in the UK (1 in Scotland, 5 in Wales and 88 in England). 61% of people were born male and 39% born female. 43% are under the age of 18 years. 55% of people are from an ethnic minority community and the AS community speaks 17 different languages.

AS is an ultra-rare, complex and life limiting condition. The condition brings many challenges and people living with AS often find themselves trying to navigate complex health, education, work, social care and benefits systems. People often require emotional, practical and financial support. ASUK helps individuals and families to understand and manage the condition and overcome many of the barriers they face when accessing services and support.

The ASUK Family Support Service provides support to people diagnosed with AS and to their parents, carers, partners, siblings and wider family members. The ASUK team provides person-centred 1:1 support, information and advice, signposting for further support from other individuals/organisations, knowledge and understanding of the impact of living with AS and hope through research.

We provide the following:

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Alström Syndrome UK

Trustees' Report

We continue to work in partnership with Birmingham Women’s and Children’s Hospital (BWCH) and the Queen Elizabeth Hospital, Birmingham (QEH) to deliver highly specialised multi-disciplinary clinics. ASUK Care Coordinators attend every AS clinic to offer support.

AS Highly Specialised Clinics during 2024-2025

Paediatric Clinics – Birmingham Women’s & Children’s Hospital

Adult Clinics – Queen Elizabeth Hospital, Birmingham

During the year we received 6 new referrals aged 2 months, 7, 2x18, 28 and 35 years. 3 people sadly passed away, aged 4 months, 24, and 35 years. We continue to support bereaved families and the AS community as best we can. Losing members of the AS community is devastating and impacts all of us.

We continue to provide emotional and practical support and the introduction of our new Wellbeing Service has been welcomed by our community.

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 equipment to support daily living. Through our Adult Empowerment grants, we have provided funding for people over the age of 18 years to visit new places of interest and to challenge themselves to try new activities and develop independence. It has been lovely to see people experiencing new adventures and having fun while also becoming more active and taking part in exercise. We provided 15 grants in total throughout the year.

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Alström Syndrome UK

Trustees' Report

We continue to work with local authorities and different charities to identify opportunities for individuals and families to access short breaks, cost-of-living grants and emergency essential food and equipment.

Last year we ran a residential weekend for children aged 8 years and over. This year we ran a residential weekend for children aged 8 years and under (plus any child who missed out on last year’s activities) accompanied by their siblings of any age and their parents/carers. This exciting weekend included a trip to Ash End Farm, music making activity, Dippy the clown show, circus skills and balloon modelling. It was filled with fun and laughter with everyone making new friends. This residential activity was made possible through funding from Children in Need. This was the final year of a 3-year grant and the outcomes we have been working towards are:

The funding also enabled us to run a Foodie Active Friends Club. These sessions were run alongside clinics to provide social activities, fun, games and information sessions - including healthy eating and oral health using tactile resources which are helpful for children and young people with sight loss.

This grant has enabled us to organise some fabulous activities and events. It has been wonderful to see the difference this funding and these opportunities have made for children, young people and their families. We are very grateful to Children in Need and although our recent grant application was unsuccessful, we hope to be able to apply again soon.

In October we held our ASUK ‘Together Again’ conference. The event brought families and professionals together again for the first time since 2019, when Covid hampered our efforts to be together in person. This was a great opportunity to explore the latest research and clinical developments and share our lived experiences and top tips. The conference took place in the West Midlands and while parents and carers took part in the conference, children and young people had a fun filled day out at Drayton Manor theme park. Our Medical and Scientific Advisory Group also took this opportunity to meet and discuss research opportunities which have led to exciting new opportunities in 2025/26.

The ASUK Culture Family Forum (CFF) continue to meet monthly online and invite guests to discuss specific topics. This year they have interviewed ASUK Care Coordinators and a researcher who is using frogs and tadpoles to do research into AS. The CFF had an active role in the conference, they helped with planning the event, one person recorded an interview online with a clinician that was played during the conference and two CFF members spoke at the conference about their experiences of being part of the group. This was a highlight of the conference, especially when one of the young people stood up and sang a song which everyone then joined in with.

During meetings, CFF members shared their thoughts, ideas and experiences on a range of different topics including moving to residential college, how to improve clinic appointments, useful technology for people with sight and hearing loss and cooking tips. They have also done book reviews and tried out new equipment and provided feedback to the group on items such as Ramble Tags to support guided running and walking. They also take time in each meeting just to have a general catch up as friends.

One of the CFF members stood down from the group to start her ASUK Trustees of the Future Training Programme which is going very well.

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Alström 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 (BDB) websites, newsletters, email circulations, over the telephone and via social media platforms. We also take part in events throughout the rare disease community and sit on various committees and steering groups. During the year we had 160,000 visits to the ASUK website with 107,000 unique visitors. We reached 53,316 people on the ASUK Facebook page and had 10,000 impressions on X.

We continue to work internationally through AS Global. We have run 1 Welcome to Wellbeing Webinar and 1 Technology and Apps Webinar 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 delivered 1 AS Lecture and had people from over 100 countries visiting the AS Global page each month.

The BDB network has now grown to 77 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, contribute to research and run a community outreach project. We unite and strive for equitable access to services and support for all. During the year we had 170,000 visits to the BDB website with 122,000 unique visitors.

We have continued our partnership with the Department of Health & Social Care and this year we ran a workshop with our BDB Experts by Experience Advisory Group. The aim of the workshop was to gather views on the governments new 10-year Health Plan and to explore the three shifts – Analogue to Digital, Hospital to Community and Treatment to Prevention. We particularly focussed on the potential impact for people from diverse, marginalised and underserved communities who live with rare conditions. Here is a link to the workshop report The 10 Year Health Plan Workshop, Report | Breaking Down Barriers

We have continued to share our T-KASH resources (Transition, Knowledge and Skills in Healthcare). These are now being used within the wider rare disease community and beyond.

We have continued to work more broadly within the rare disease community, in the UK and across the globe. 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

The ASUK conference helped reinforce the need for more research. We were joined at the conference by scientists and clinicians who have an interest in AS. Listening to people with lived experience has sparked a determination in them to do more where they can. Following the conference, 2 research applications were submitted for research into AS that will start in 2025/26. ASUK also committed to contribute funding towards a PhD student to support research in AS at Keele University. We look forward to seeing where this research leads and will continue to work together with our Medical and Scientific Advisory Group to push for more research in areas that matter most to people living with AS.

We are pleased to be involved in wider rare disease research through projects funded by LifeArc, the National Institute for Health and Care Research, the Medical Research Council and Genomics England. We are contracted to supporting patient and public involvement and engagement for the LifeArc Acceleration of Rare Disease Trials Centre, the evaluation of The Generation Study and the evaluation of the UK Rare Diseases Framework. We have also supported Genomics England to deliver a project on Equity in Health Research.

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Alström Syndrome UK

Trustees' Report

Future aims

In December 2024, ASUK started work on a new Business Plan, supported by the Cranfield Trust. This involved slight changes to our charitable objectives and an update to our vision, mission and values. The ASUK team and Board of Trustees are working together and in consultation with the AS community to identify priorities and to find ways to strengthen the charity and improve sustainability. The new Business plan will be finalised in 2025/26.

ASUK 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 and care for our staff team and each other to develop skills, abilities and resilience.

We look forward to the year ahead.

Chair’s Review

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 a stable Board of Trustees who bring a breadth of knowledge and experience. Thank you to the Trustees for giving their time and support to 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 projects.

Our amazing team of staff continue to provide an outstanding service and work together in a way that puts the Alström community at the centre of everything they do. I would like to take this opportunity to thank the Chief Executive and our team of staff for all they do.

We held a very successful ASUK conference which brought together families and health professionals

for a very informative and fun event.

We have developed our business plan and strategy for the charity to help us prioritise and focus our work so that the charity can continue to go from strength to strength.

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Alström 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 Alström Syndrome.

Regards

Sharon Bates

Chair of the Board of Alström Syndrome UK

Financial Review

The General Fund had a surplus of £10,634 and stands at £212,740 (2024 £202,106).

The Trustees hold various designated and restricted funds, which are described in more detail in the next section.

The Trustees made grants of £5,405 from the Financial Assistance Grant Fund and £2,525 from the Adult Empowerment Grant Fund.

The restricted funds stand at £61,253 (2024 £43,611).

Reserves Policy and Going 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:

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 £14,000 - Amount set aside to provide financial support to AS patients, and their families based upon an assessment of need.

Activities Fund £6,000 - Amount set aside to provide funds for activities.

Research Fund £40,000 – Amount set aside to fund research into AS.

Fixed Assets Fund £1,553 – represent the fixed assets and cannot be used to fund expenditure unless the assets are sold.

The remaining reserves of £212,740 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:

  1. The loss of key personnel

  2. The loss of the NHS England clinic contract

  3. Failing to secure sufficient funds

The Trustees monitor and actively manage the risks through quarterly reports and regular updates with staff.

Page 8

Alström Syndrome UK

Trustees' Report

Statement of trustees' responsibilities

The trustees (who are also the directors of Alström Syndrome UK for the purposes of company law) are responsible for preparing 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 statements 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 resources and application of resources, including its income and expenditure, of the charitable company for that period. In preparing these financial statements, the trustees are required to:

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 from legislation in other jurisdictions.

Small companies provision 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 15 October 2025 and signed on its behalf by:

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 a¢￿untS of the Company for the year 8nded 31 March 2025. Responslbllltles and ba818 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 ('Ihe 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 Garried out under section 145 of the Charities Act 2011 ('the 2011 Act,). In carrying out my examination I have followed the DIr￿tionS given by the Charity Commi83ion under section 145(5)(b) of the 2011 Act. Indepondont examlner'8 8tstom8nt 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 the Institute of Chartered Accountants in England and Wales (ICAEW), whlch 18 one of the listed bodies. I have completed my examinatlon. I confirm that no matters have come to my attents'on in connection wlth the examination giving me cause to believe., 1. accountlng record5 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; or 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, whbch is not a matter considered as part of an independent examination,. or 4. the accounts have not been prepared in accordance wlth the methods and princlples of the Statement of Recommended Practice for accountlng and reports'ng by charities applicable to charities preparing their accounts in 8c¢ordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102). 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 io De reacnea. Catherine IAfjlliams FCA DChA INestcotts (SW) LLP Independent Examiner 47 8outport Street Bamstsple Devon EX311SQ Page 10

Alström Syndrome UK

Statement of Financial Activities for the Year Ended 31 March 2025 (Including Income and Expenditure Account and Statement of Total Recognised Gains and Losses)

Note
Income and Endowments
Donations and legacies
from:
3
Charitable activities
4
Investment income
5
Total income
Expenditure on:
Raising funds
6
Charitable activities
7
Total expenditure
Net income
Net movement in funds
Reconciliation of funds
Total funds brought forward
Total funds carried forward
20		 Unrestricted
funds
£
4,951
252,495
2,942
260,388
(216)
(233,827)
(234,043)
26,345
26,345
247,948
274,293		 Restricted
funds
£
-
119,000
-
119,000
-
(101,358)
(101,358)
17,642
17,642
43,611
61,253		 Total
2025
£
4,951
371,495
2,942
379,388
(216)
(335,185)
(335,401)
43,987
43,987
291,559
335,546		 Total
2024
£
3,976
348,063
2,627
354,666
(216)
(340,769)
(340,985)
13,681
13,681
277,878
291,559

All of the charity's activities derive from continuing operations during the above two periods. The funds breakdown for 2024 is shown in note 20.

The notes on pages 13 to 24 form an integral part of these financial statements. Page 11

Alström Syndrome UK

(Registration number: 3557191) Balance Sheet as at 31 March 2025

2025 2024
Note £ £
Fixed assets
Tangible assets 14 1,553 2,186
Current assets
Debtors 15 64,883 42,071
Investments 16 85,000 85,000
Cash at bank and in hand 17 208,502 194,981
358,385 322,052
Creditors: Amounts falling due within one year 18 (24,392) (32,679)
Net current assets 333,993 289,373
Net assets 335,546 291,559
Funds of the charity:
Restricted income funds
Restricted funds 61,253 43,611
Unrestricted income funds
Unrestricted funds 274,293 247,948
Total funds 20 335,546 291,559

For the financial year ending 31 March 2025 the charity was entitled to exemption from audit under section 477 of the Companies Act 2006 relating to small companies.

Directors' responsibilities:

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 15 October 2025 and signed on their behalf by:

Sharon Bates Trustee

The notes on pages 13 to 24 form an integral part of these financial statements.

Page 12

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

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

These financial statements were authorised for issue by the trustees on 15 October 2025.

2 Accounting policies

Summary of significant accounting policies and key accounting estimates

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 compliance

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 102)) (issued in October 2019) - (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 preparation

Alstrom Syndrome UK meets 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.

Exemption from preparing a cash flow statement

The charity opted to adopt Bulletin 1 published on 2 February 2016 and have therefore not included a cash flow statement in these financial statements.

Income and endowments

All income is recognised once the charity has entitlement to the income, it is probable that the income will be received and the amount of the income receivable can be measured reliably.

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Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

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 a 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.

Expenditure

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 basis consistent 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.

Raising funds

These are costs incurred in attracting voluntary income, the management of investments and those incurred in trading activities that raise funds.

Charitable activities

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.

Tangible fixed 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 amortisation

Depreciation is provided on tangible fixed assets so 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 25% straight line

Page 14

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

Current asset investments

Current asset investments are included at the lower of cost and net realisable value / market value.

Cash and cash equivalents

Cash and cash equivalents comprise cash on hand and call deposits, 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 objectives 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.

Financial instruments

Classification

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 liabilities.

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, b) the charity transfers to another party substantially all of the risks and rewards of ownership of the financial asset, or c) 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 obligation specified in the contract is discharged, cancelled or expires.

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Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

3 Income from donations and legacies

Donations
General Donations
Donations
General Donations
4 Income from charitable activities
Unrestricted Grants
Transition Activities
Breaking Down Barriers
NHS Commissioning
Sundry income
Unrestricted Grants
Transition Activities
Breaking Down Barriers
Pears
NHS Commissioning
Sundry income		 Unrestricted
funds
£
3,000
-
-
187,700
61,795
252,495
Unrestricted
funds
£
8,000
-
-
-
180,089
14,474
202,563		 Unrestricted
funds
£
4,951
Unrestricted
funds
£
3,976
Restricted
funds
£
-
6,000
113,000
-
-
119,000
Restricted
funds
£
-
24,000
113,000
8,500
-
-
145,500		 Total
2025
£
4,951
Total
2024
£
3,976
Total
2025
£
3,000
6,000
113,000
187,700
61,795
371,495
Total
2024
£
8,000
24,000
113,000
8,500
180,089
14,474
348,063

Page 16

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

5 Investment income

Bank interest receivable
Bank interest receivable
6 Expenditure on raising funds
Costs of raising donations and legacies
Administration costs
Costs of raising donations and legacies
Administration costs
7 Expenditure on charitable activities
NHS Commissioning
Transition Activities
Breaking Down Barriers
Pears
Financial Assistance Grant Fund
Adult Empowerment Grant fund
Fixed assets
Support costs
8
General		 Unrestricted
funds
£
170,279
-
-
-
5,405
2,525
1,771
45,558
8,289
233,827		 Unrestricted
funds
£
2,942
Unrestricted
funds
£
2,627
Unrestricted
funds
General
£
216
Unrestricted
funds
General
£
216
Restricted
funds
£
-
13,666
84,772
2,920
-
-
-
-
-
101,358		 Total
2025
£
2,942
Total
2024
£
2,627
Total
2025
£
216
Total
2024
£
216
Total
2025
£
170,279
13,666
84,772
2,920
5,405
2,525
1,771
45,558
8,289
335,185

Page 17

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

NHS Commissioning
Transition Activities
Breaking Down Barriers
Pears
Financial Assistance Grant Fund
Adult Empowerment Grant fund
Fixed assets
Support costs
8		 Unrestricted
funds
£
146,539
-
-
-
6,549
2,000
1,902
57,890
214,880		 Restricted
funds
£
-
19,089
100,660
6,140
-
-
-
-
125,889		 Total
2024
£
146,539
19,089
100,660
6,140
6,549
2,000
1,902
57,890
340,769

8 Analysis of support costs Support costs allocated to charitable activities

Staff costs
Membership fees
Sundry expenses
Telephone
Insurance
Accountancy fees
Contractors fees
Hotels, travelling and subsistence costs
Printing, postage, stationery and advertising
Conferences		 Total
2025
£
29,511
593
1,421
175
1,090
1,314
6,449
4,903
75
27
45,558		 Total
2024
£
30,083
605
8,747
385
1,203
1,251
6,435
1,543
71
7,567
57,890

Page 18

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

9 Net incoming/outgoing resources

Net incoming resources for the year include:

Depreciation of office equipment 2025
£
1,771		 2024
£
1,902

10 Trustees remuneration and expenses

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 and the ASUK conference these claims totaled £1,733 (2024 £7,721). Costs have decreased from 2024, which included 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:

Staff costs during the year were:
Wages and salaries
Social security costs
Pension costs
Other staff costs		 2025
£
188,447
12,343
10,158
3,653
214,601		 2024
£
202,101
13,489
10,195
4,416
230,201

The average head count of employees during the year was 8 (2024: 8). The average number of full-time equivalent employees during the year is analysed as follows:

Staff 2025
No
5		 2024
No
5

No employee received emoluments of more than £60,000 during the year.

Page 19

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

12 Independent examination fees
2025
£
Independent examination of the financial statements
2,628
13 Taxation
The charity is a registered charity and is therefore exempt from taxation.		 2024
£
2,502

14 Tangible fixed assets

Cost
At 1 April 2024
Additions
At 31 March 2025
Depreciation
At 1 April 2024
Charge for the year
At 31 March 2025
Net book value
At 31 March 2025
At 31 March 2024		 Computer
equipment
£
13,012
1,138
14,150
10,826
1,771
12,597
1,553
2,186

Page 20

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

15 Debtors
Trade debtors
Prepayments
16 Current asset investments
Deposits
17 Cash and cash equivalents
Cash at bank
18 Creditors: amounts falling due within one year
Trade creditors
Other taxation and social security
Accruals		 2025
£
62,564
2,319
64,883
2025
£
85,000
2025
£
208,502
2025
£
2,569
14,656
7,167
24,392		 2024
£
18,507
23,564
42,071
2024
£
85,000
2024
£
194,981
2024
£
7,765
14,170
10,744
32,679

19 Pension and other schemes

Defined contribution pension scheme

The amount recognised in income or expenditure as an expense in relation to defined contribution plans was £10,158 (2024: 10,195).

Page 21

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

20 Funds

Unrestricted funds
General Funds
Financial Assistance Grant
Fund
Adult Empowerment Grant
Fund
Fixed Assets
Research Fund
Activities Fund
Restricted funds
Children in Need
Breaking Down Barriers
Pears
Total funds		 Balance
at 1
April
Incoming
2024
£
resources
£
202,106
260,388
8,038
-
15,618
-
2,186
-
20,000
-
-
-
247,948
260,388
7,666
6,000
33,025
113,000
2,920
-
43,611
119,000
291,559
379,388		 Resources
expended
£
(224,342)
(5,405)
(2,525)
(1,771)
-
-
(234,043)
(13,666)
(84,772)
(2,920)
(101,358)
(335,401)		 Transfers
£
(25,412)
11,367
(13,093)
1,138
20,000
6,000
-
-
-
-
-
-		 Balance
at 31
March
2025
£
212,740
14,000
-
1,553
40,000
6,000
274,293
-
61,253
-
61,253
335,546

Page 22

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

Unrestricted funds
General Funds
Financial Assistance Grant Fund
Adult Empowerment Grant Fund
Fixed Assets
Research Fund
Restricted funds
Children in Need
Breaking Down Barriers
Pears
Total funds
Unrestricted Funds		 Balance at
1 April
2023
£
197,585
14,587
17,618
4,088
20,000
253,878
2,755
20,685
560
24,000
277,878		 Incoming
resources
£
209,166
-
-
-
-
209,166
24,000
113,000
8,500
145,500
354,666		 Resources
expended
£
(204,645)
(6,549)
(2,000)
(1,902)
-
(215,096)
(19,089)
(100,660)
(6,140)
(125,889)
(340,985)		 Balance at
31 March
2024
£
202,106
8,038
15,618
2,186
20,000
247,948
7,666
33,025
2,920
43,611
291,559

General Fund

General funds are donations and other incoming resources 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 adults. Funds may also be used to improve communication and confidence for adults with Alstrom.

Fixed Assets

Fixed Assets which cannot be used to fund expenditure without being sold.

Research Fund

Amount set aside to fund research into Alstrom Syndrome.

Activities Fund

Amount set aside to provide funds for activities.

Page 23

Alström Syndrome UK

Notes to the Financial Statements for the Year Ended 31 March 2025

Restricted 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 Analysis of net assets between funds

21 Analysis of net assets between funds
Tangible fixed assets
Current assets
Current liabilities
Total net assets
Tangible fixed assets
Current assets
Current liabilities
Total net assets		 Unrestricted
funds
General
£
1,553
294,197
(21,457)
274,293
Unrestricted
funds
General
£
2,186
267,774
(22,012)
247,948		 Restricted
funds
£
-
64,188
(2,935)
61,253
Restricted
funds
£
-
54,278
(10,667)
43,611		 Total funds
at 31 March
2025
£
1,553
358,385
(24,392)
335,546
Total funds
at 31 March
2024
£
2,186
322,052
(32,679)
291,559

22 Related party transactions

There were no related party transactions in the year.

Page 24