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2023-06-30-accounts

REGISTERED COMPANY NUMBER: 04814120 (England and Wales) REGISTERED CHARITY NUMBER: 1101052

REPORT OF THE TRUSTEES AND

UNAUDITED FINANCIAL STATEMENTS

FOR THE YEAR ENDED 30 JUNE 2023

FOR

THE ALKAPTONURIA SOCIETY LTD

Staffords Chartered Accountants Unit 1, Cambridge House Camboro Business Park Oakington Road, Girton CAMBRIDGE Cambridgeshire CB3 0QH

THE ALKAPTONURIA SOCIETY LTD

CONTENTS OF THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2023

Page
Report of the Trustees 1 to 7
Independent Examiner's Report 8
Statement of Financial Activities 9
Balance Sheet 10 to 11
Notes to the Financial Statements 12 to 24

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 30 JUNE 2023

The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 30 June 2023. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).

Page 1

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

REPORT OF THE TRUSTEES

FOR THE YEAR ENDED 30 JUNE 2023

OBJECTIVES AND ACTIVITIES Objectives and aims

Transforming the lives of AKU patients through patient support, community building and medical research.

  1. Patient Support Through up-to-date and reliable information, annual UK patient workshops, biennial international workshops, hands-on support at the National Alkaptonuria Centre (NAC), individual home visits, and mental health support.

  2. Living with AKU is challenging, with loss of mobility and pain affecting patients' physical and mental health. This is why the support we provide to our patients and their families is vital. We help them come to terms with their diagnosis and provide them with the tools to best manage their condition.

    1. Community Building Uniting patients in the UK and abroad and helping to raise awareness of the disease among the public and medical professionals. Living with AKU is isolating. Patients are sparsely located all over the world, often without access to care and doctors who know about their condition. We work hard to unite AKU patients and build a supportive community.

  4. Medical Research To understand, treat, and cure AKU.

  5. Our ultimate goal is finding a cure for AKU. We now have access to a disease modifying treatment after our successful clinical trial, DevelopAKUre, that showed a drug called nitisinone reduced the acid that causes AKU by 99.8%. We are now championing research into other therapies and co-therapies to realise our goal of curing AKU.

About Alkaptonuria & the AKU Society

AKU, also known as 'Black Bone Disease', is an extremely rare genetic condition, which causes significant damage to the bones, cartilage, and tissues. AKU usually affects one in every 250,000 people worldwide. It is a recessive condition that is caused by a mutation of one chromosome; this means that if two people carry the fault gene, their child has a 25% chance of developing AKU.

AKU stops patients' bodies from breaking down a chemical called homogentisic acid (HGA), which the body naturally produces during the digestion of food. Due to this, HGA builds up in the body and, over time, leads to black and brittle bones and cartilage, and early-onset osteoarthritis. The build-up of HGA in the body can also lead to other, sometimes more severe health complications.

Founded in 2003, the AKU Society offers life-changing support to patients and their families. It provides patients with personalised care and home visits, along with the latest information from specialist workshops, our website, social media, and online patient communities.

The AKU Society also pioneers ground-breaking research into the disease, including our successful European-wide clinical trial, DevelopAKUre, into a drug called nitisinone. This showed the drug was safe and effective in treating AKU and the drug received approval for treating AKU from the European Medicine Agency in 2020.

We see a future where no one born with AKU anywhere in the world has the symptoms of this disease. Through patient support, community building, and medical research, the AKU Society aims to transform the lives of AKU patients.

AKU patients, like the majority of rare disease patients, often feel isolated because of their disease. Many patients have had years of misdiagnosis and misunderstanding from medical professionals. Often, their family finds it hard to understand what is wrong. This leaves many AKU patients feeling depressed and with a sense of isolation.

The AKU Society aims to change this by uniting patients at our biennial international and annual domestic patient workshops which helps us to grow the AKU community. We have also formed an innovative partnership with rare disease counselling service Rareminds CIC which is designed to address the often-neglected mental health of those suffering with AKU. This service allows us to bring people together to learn and share ways they can manage their mental health through techniques such as mindfulness and individual one-on-one counselling.

Page 2

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 30 JUNE 2023

Our social media channels and website inform the public and medical professionals about our work and the advances in research into the disease. Our website also offers information in different languages and formats to make it accessible to those who either live abroad or in the UK with English as a second language, have specific learning difficulties, or with sensory issues.

We are also members of the Patient Information Forum (PIF) 'PIF Tick' programme. This kitemark shows that all medical information has gone through a strict production procedure designed to make it as accessible as possible including peer and user reviews.

The most useful way we can help our patients is through active research into the understanding and treatment of AKU. Our goal is to find a cure for the disease. We continue to build strong partnerships with universities and hospitals to expand the scientific knowledge of AKU and its treatment.

Achievements and performance during the period

  1. National Alkaptonuria Centre (NAC)

  2. Based at the Royal Liverpool and Broadgreen University Hospital and funded by the NHS Highly Specialised Services, the NAC continues to offer yearly check-ups, expert care, monitoring, and pain relief to patients based in the UK along with access to the drug nitisinone. The AKU Society supports the running of the NAC through patient liaison, logistics, and ensuring patients are prepared for their annual clinic. We also continue to find new patients, manage referrals, and fight for equity of access for all patients based in the UK. Normal service resumed at the NAC following the disruption that the COVID-19 pandemic caused. However, industrial action at the hospital did cause some disruption to the service of the NAC and some visits had to be rescheduled. In October, the old hospital building closed and the hospital moved across to the newly built hospital. In the new building, the NAC is without a permanent base for patients to stay in the time between their appointments which has caused some disruption for patients. We are working with the NAC team to overcome the teething problems which have arisen as a result of the move to the new building.

    1. Medical research We are continuing to conduct research into developing potential treatments and cures for AKU. We work closely with the AKU research group at the University of Liverpool as well as a number of other universities and pharmaceutical companies around the world.

  4. Our current focus is developing a tyrosine reduction co-therapy to be used alongside nitisinone which would increase the safety and effectiveness of nitisinone treatment. We are also working on research in a number of other areas including gene therapy and mRNA therapy.

    1. AKU Patient Workshop We had planned to host an AKU patient workshop in the autumn of 2022. Unfortunately, due to ongoing rail strikes this had to be postponed and the workshop will now be held in September 2023. Our workshop will be open to all UK AKU patients and their loved ones. We will host a number of specialist sessions aimed at supporting the management of the physical and mental impacts of AKU.
    1. Mental Health Support

  7. We continue to provide AKU patients with access to mental health counselling from Rareminds CIC. Patients can arrange one-on-one counselling with experienced counsellors who have an understanding of rare diseases and AKU. This service is essential to providing support to our patients and their loved ones by helping them cope with the significant mental impact of their condition and the social isolation that AKU can cause.

    1. AKU Global Registry

  9. We are currently in the process of building our AKU patient registry. In the past year we have been collaborating with clinicians from around the world and working with Dendrite Ltd to plan and design our registry. We are aiming to launch our registry in the UK in the Autumn of 2023 before expanding it to encompass the entire world.

  10. Our registry will allow us to track the progression and prevalence of AKU around the world. This will help us to achieve universal access to treatment and allow us to accelerate our medical research into the condition.

    1. International Scientific Conference on AKU In July 2023 we hosted our 13th International Scientific Conference on AKU in Bratislava, Slovakia. This was our largest conference to date, With over 70 in person attendees and over 30 virtual attendees joining us over the two days. Our conference allowed us to unite the AKU scientific community and forge a number of new relationships which will help us to drive our research into treating and curing AKU forward.

Page 3

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 30 JUNE 2023

OBJECTIVES AND ACTIVITIES Public benefit

The Trustees have complied with S17(5) of the Charities Act 2011 and have had due regard to the guidance on Public Benefit by the Charity Commission when exercising relevant powers and duties. See "About Alkaptonuria" section for details of how the charity provides a public benefit.

Partnerships

The AKU Society works in close partnership with several organisations, most notably the University of Liverpool (with Prof George Bou-Gharios and his lab at the Institute of Ageing and Chronic Disease), the Royal Liverpool and Broadgreen University Hospital Trust (with Prof L Ranganath at the Department of Clinical Chemistry) and Liverpool John Moores University (with Dr Gabor Barton at the Department of Sports and Exercise Science).

The AKU Society was founded in Liverpool, so our links there are the strongest. Liverpool is the home of the National AKU Centre, an NHS-funded clinical centre of excellence for the treatment of AKU.

Grantmaking

Our grantmaking is focused on supporting AKU research at the University of Liverpool, with which we have a 16 year partnership. The University of Liverpool is the world leader in AKU research and has several animal models of AKU that are used for testing out new therapies. All project proposals from the University of Liverpool are peer reviewed and amended accordingly before grant funding is agreed. The AKU Society believes that having such a close relationship with a world-class research institute over the long-term is the best use of our funds and ensures our continued success rather than spreading ourselves across many research institutes that don't have the same commitment to AKU. This ensures we can meet our objectives to increase our understanding of AKU and develop new and better treatments for this devastating disease.

Volunteers

We have a group of volunteers that are mainly from our AKU patient community and their families. They help with fundraising, patient support and sharing news about AKU.

ACHIEVEMENT AND PERFORMANCE

Fundraising activities

Trusts & Foundations - Our main source of income for specific projects: Eleanor Rathbone - £3,000 - Patient Workshop Strangward Foundation - £2,000 - Patient Workshop Sir Samuel Scott of Yews Trust - £5,000 - Tyrosine Reduction Study National Lottery Award - £10,000 - Patient Workshop Saturday Hospital Fund - £2,000 - Patient Workshop Hobson Charity Foundation - £5,000 - Patient Outreach Program Jeans for Genes - £2,500 - Website redesign EJPRD - £26,400 - AKU International Conference Vitaflo - £5,000 - Sponsorship Robert Luff Foundation - £20,000 - Tyrosine Reduction Study Leach 14th Trust - £2,000 - Patient Outreach Programme

Corporate Partnerships

We have a corporate partnership with VItaflo who we work closely with to provide our patient community with low protein products to assist their management of their condition. We recieved £5,000 towards our work.

FINANCIAL REVIEW

Financial position

We are currently holding significant reserves due to the large-scale scientific research that we conduct. The scale of these projects means that the fundraising for these studies takes place over multiple years. Due to this we must hold funding until the threshold of funding to begin the studies is met and then draw down on it each year for multi-year studies. The money we raise for these studies in our reserves are placed into restricted or designated funds relating to the specific project.

Page 4

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

REPORT OF THE TRUSTEES

FOR THE YEAR ENDED 30 JUNE 2023

FINANCIAL REVIEW

Principal funding sources

The charity's principal funding sources is a grant for the National AKU Centre from the Royal Liverpool University Hospital.

Investment policy and objectives

The Trustees have the power to invest any monies not immediately required for charitable purposes of the Company. The policy involves investing in ethical bonds.

Reserves policy

At any time, the Charity is to keep enough reserves to enable it to meet its contractual obligations for up to 12 months. Any excess reserves will be used to increase work to meet our charitable objectives.

Incoming resources for the year totalled £381,037 (2022: £586,708) of which £364,991 (2022: £566,349) related to funding for projects upon which restrictions are placed. Total expenditure for the period was £292,618 (2022: £300,351).

At 30 June 2023 the Charity's total funds stood at £943,160 (2022:£854,741) of which £716,029 (2022:£638,630) represented restricted funds. Details of each restricted fund are shown in the notes to the accounts.

The Trustees have designated £112,500 (2022: £112,500) for use towards research costs over and above the £150,000 (2022: £150,000) of restricted research funds.

There are also two designated funds representing the net book value of fixed assets that can only be realised by disposing of tangible fixed assets, and royalties which have been received for a book shared between various organisations which the charity receives and distributes.

FUTURE PLANS

We are continuing to fundraise for a tyrosine reduction study to counter the side effects of nitisinone treatment. We have already raised £590,000 and plan to approach companies and trusts to fundraise for a further £270,000 to begin the study.

We are also in the process of fundraising for a number of other research projects and patient support projects. These include an international AKU patient workshop, outreach campaigns, and mental health support.

STRUCTURE, GOVERNANCE AND MANAGEMENT Governing document

The Alkaptonuria Society is a charitable company limited by guarantee governed by its Memorandum and Articles of Association dated 27th June 2003. It registered as a charity with the Charity Commission on 5th December 2003.

Recruitment and appointment of new trustees

As set out in the Articles of Association, at every Annual General Meeting one third of the Trustees shall be subject to retirement by rotation. Those who have been longest in office since their last appointment will be subject to this requirement. If the vacancy left by the retiring Trustee is not filled at the meeting, if willing to continue, the retiring Trustee will be reappointed.

Organisational structure

The AKU Society has a board of trustees and three staff (part-time CEO, full-time Head of Patient Support and Welfare, and full-time Fundraising and Communications Officer.

Decision making

Strategic and non-executive decisions are made by the board of trustees, which meets on a quarterly basis. Day-to-day and operational decisions are made by staff.

Page 5

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

REPORT OF THE TRUSTEES

FOR THE YEAR ENDED 30 JUNE 2023

STRUCTURE, GOVERNANCE AND MANAGEMENT Induction and training of new trustees

All Trustees receive a full induction and training day, in accordance with Charity Commission good practice. They are briefed on their legal obligations under charity and company law, the specific structure of Alkaptonuria Society as a Company Limited by Guarantee, including the committee and decision making process and business plan. During this training day they will meet key employees and co-trustees

Key management remuneration

The CEO is paid £50,000 per year. Pay and remuneration for staff is decided by the board of trustees and is reviewed on a regular basis and compared with similar positions in other similar sized charities.

Wider network

The AKU Society is a member of the Genetic Alliance UK, which brings together rare disease patient groups in the UK, and the Strategic Healthcare Alliance, which campaigns for fair policy for rare diseases. It is also a member of Eurordis (the European Organisation of Rare Diseases).

Related parties

The AKU Society works with the networks mentioned above to help share information about rare diseases, support rare disease patients, and ensure that policies for rare disease patients are equitable and fair.

REFERENCE AND ADMINISTRATIVE DETAILS

Registered Company number

04814120 (England and Wales)

Registered Charity number

1101052

Registered office

66 Devonshire Road CAMBRIDGE Cambridgeshire CB1 2BL

Trustees

Prof L R Ranganath Doctor Prof A Shenkin Emeritus Professor Dr N T Sireau PhD Charity CEO W A Esmond Retired Dr D Batty Prof J A Gallagher Ms J Barnes

Independent Examiner

Matthew Pettifer FCA Staffords Chartered Accountants Unit 1, Cambridge House Camboro Business Park Oakington Road, Girton CAMBRIDGE Cambridgeshire CB3 0QH

Solicitors

White & Case LLP, 5 Old Broad Street, LONDON, EC2N 1DW

Page 6

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

REPORT OF THE TRUSTEES

FOR THE YEAR ENDED 30 JUNE 2023

REFERENCE AND ADMINISTRATIVE DETAILS

Bankers

Co-operative Bank plc PO Box 250 Delf House SKELMERSDALE WN8 6WT

Unity Trust Bank Nine Brindley Place BIRMINGHAM B1 2HB

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 order of the board of trustees on ............................................. and signed on its behalf by:

........................................................................ Dr N T Sireau PhD - Trustee

Page 7

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF THE ALKAPTONURIA SOCIETY LTD

Independent examiner's report to the trustees of The Alkaptonuria Society Ltd ('the Company')

I report to the charity trustees on my examination of the accounts of the Company for the year ended 30 June 2023.

Responsibilities and basis 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 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under Section 145(5) (b) of the 2011 Act.

Independent examiner's statement

Since your charity's gross income exceeded £250,000 your examiner must be a member of a listed body. I can confirm that I am qualified to undertake the examination because I am a member of the ERROR - relevant professional body must be completed, which is one of the listed bodies.

I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe:

  1. accounting records were not kept in respect of the Company as required by Section 386 of the 2006 Act; or 2. the accounts do not accord with those records; or

  2. 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

  3. 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 (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 to be reached.

Matthew Pettifer FCA

Staffords Chartered Accountants Unit 1, Cambridge House Camboro Business Park Oakington Road, Girton CAMBRIDGE Cambridgeshire CB3 0QH

Date: .............................................

Page 8

THE ALKAPTONURIA SOCIETY LTD

STATEMENT OF FINANCIAL ACTIVITIES (INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 30 JUNE 2023

Unrestricted
funds
Notes
£
INCOME AND ENDOWMENTS FROM
Donations and legacies
3
9,238
Charitable activities
5
Research
-
Investment income
4
4,741
Other income
6
2,067
Total
16,046
EXPENDITURE ON
Raising funds
7
-
Charitable activities
8
Research
4,757
Total
4,757
NET INCOME
11,289
Transfers between funds
17
(269)
Net movement in funds
11,020
RECONCILIATION OF FUNDS
Total funds brought forward
216,111
TOTAL FUNDS CARRIED FORWARD
227,131		 Restricted
funds
£
13,701
351,226
-
64
364,991
1,538
286,323
287,861
77,130
269
77,399
638,630
716,029		 2023
Total
funds
£
22,939
351,226
4,741
2,131
381,037
1,538
291,080
292,618
88,419
-
88,419
854,741
943,160		 2022
Total
funds
£
304,878
281,500
330
-
586,708
600
299,751
300,351
286,357
-
286,357
568,384
854,741

The notes form part of these financial statements

Page 9

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

BALANCE SHEET

30 JUNE 2023

Notes
FIXED ASSETS
Tangible assets
14
CURRENT ASSETS
Debtors
15
Cash at bank
CREDITORS
Amounts falling due within one year
16
NET CURRENT ASSETS
TOTAL ASSETS LESS CURRENT
LIABILITIES
NET ASSETS
FUNDS
17
Unrestricted funds:
General Fund
Designated Fixed Asset Fund
Designated Royalties
Designated Research Fund
Restricted funds
TOTAL FUNDS		 Unrestricted
funds
£
3,338
-
223,935
223,935
(142)
223,793
227,131
227,131		 Restricted
funds
£
-
9,060
804,695
813,755
(97,726)
716,029
716,029
716,029		 2023
Total
funds
£
3,338
9,060
1,028,630
1,037,690
(97,868)
939,822
943,160
943,160
111,186
3,338
107
112,500
227,131
716,029
943,160		 2022
Total
funds
£
2,437
7,053
943,221
950,274
(97,970)
852,304
854,741
854,741
101,067
2,437
107
112,500
216,111
638,630
854,741

The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ended 30 June 2023.

The members have not required the company to obtain an audit of its financial statements for the year ended 30 June 2023 in accordance with Section 476 of the Companies Act 2006.

The trustees acknowledge their responsibilities for

The notes form part of these financial statements

continued...

Page 10

THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)

BALANCE SHEET - continued

30 JUNE 2023

These financial statements have been prepared in accordance with the provisions applicable to charitable companies subject to the small companies regime.

The financial statements were approved by the Board of Trustees and authorised for issue on ............................................. and were signed on its behalf by:

.............................................

N T Sireau PhD - Trustee

The notes form part of these financial statements

Page 11

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2023

1. LEGAL FORM

The charity is a registered charity registered in England and Wales number 1101052 and a company limited by guarantee, having no share capital, incorporated in England and Wales number 04814120.

Its registered office and principal place of business is is 66 Devonshire Road, Cambridge, CB1 2BL.

The operations of the entity are to educate the public regarding Alkaptonuria Disease through an internet website; provide information and advice to sufferers via a National AKU Centre, hosting conferences and through online community projects; and to promote research into Alkaptonuria Disease by working with research teams in the Universities in Liverpool.

2. ACCOUNTING POLICIES

Basis of preparing the financial statements

The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Companies Act 2006. The financial statements have been prepared under the historical cost convention.

The trustees consider there to be no material uncertainties about the charity's ability to continue as a going concern.

The charity is a public benefit entity.

Financial reporting standard 102 - reduced disclosure exemptions

The charitable company has taken advantage of the following disclosure exemptions in preparing these financial statements, as permitted by FRS 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland':

Income

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

Donations are recognised on receipt.

Grant income is recognised in full on receipt unless there are unfulfilled performance conditions that do not allow the income to be recognised. In this case the grant is accounted for as a liability until the performance conditions have been met.

Grant income is only deferred if the grant is time-related and relates partly or wholly to a post year-end time period.

The charity becomes entitled to the EC grant income once eligible expenditure is made, so income is accrued where expenditure has been incurred.

The charity is not VAT registered.

continued...

Page 12

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

2. ACCOUNTING POLICIES - continued

Expenditure

Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources.

Raising funds

Costs of generating funds comprise costs incurred in order to encourage others to donate to the charity and the costs associated with preparing bids and tenders for grant funding.

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.

Governance costs

Governance costs include those costs associated with meeting the constitutional and statutory requirements of the charity and include the examination fees and costs linked to the strategic management of the charity.

Allocation and apportionment of costs

All costs are allocated between the expenditure categories of the SOFA on a basis designed to reflect the use of the resource. Costs relating to a particular activity are allocated directly, others are apportioned on an appropriate basis, e.g estimated usage.

Tangible fixed assets

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

Plant and machinery

All assets costing more than £500 are capitalised.

Taxation

The charity is exempt from corporation tax on its charitable activities. Irrecoverable VAT is included in the cost of the expense to which it relates.

Fund accounting

Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.

Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.

Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.

Research and development

Expenditure on research and development is written off in the year in which it is incurred.

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.

continued...

Page 13

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

2. ACCOUNTING POLICIES - continued

Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

Cash at bank and in hand

Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening the deposit or similar account.

Creditors and provisions

Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be estimated or measured reliably Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

Financial instruments

The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised as transaction value and subsequently measured at their settlement value.

3. DONATIONS AND LEGACIES

Donations
4.
INVESTMENT INCOME
Deposit account interest		 2023
£
22,939
2023
£
4,741		 2022
£
304,878
2022
£
330

continued...

Page 14

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

5. INCOME FROM CHARITABLE ACTIVITIES

Activity
Grants
Research
Grants received, included in the above, are as follows:
National AKU Centre
Jeans for Genes
Hospital Saturday Fund
Swedish Orphan Biovitrum
Vitaflo
Awards for All
National Lottery Community Fund - COVID response grant
European Joint Programme on Rare Diseases
UKRI MRC
Robert Luff Foundation
Eleanor Rathbone Charitable Trust
6.
OTHER INCOME
Other income
7.
RAISING FUNDS
Raising donations and legacies
Costs of generating income
Other trading activities
Bad debts
Aggregate amounts		 2023
£
351,226
2023
£
169,920
2,500
2,000
4,251
5,000
10,000
-
20,555
114,000
20,000
3,000
351,226
2023
£
2,131
2023
£
1,298
2023
£
240
1,538		 2022
£
281,500
2022
£
157,740
-
-
11,456
5,000
-
(10,000)
24,534
72,770
20,000
-
281,500
2022
£
-
2022
£
600
2022
£
-
600

Page 15

continued...

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

8. CHARITABLE ACTIVITIES COSTS

Research
SUPPORT COSTS
Research		 Direct
Costs
£
286,204		 Support
costs (see
note 9)
Totals
£
£
4,876
291,080
Governance
costs
£
4,876

9. SUPPORT COSTS

10. NET INCOME/(EXPENDITURE)

Net income/(expenditure) is stated after charging/(crediting):

2023 2022
£ £
Depreciation - owned assets 2,029 2,458

11. TRUSTEES' REMUNERATION AND BENEFITS

Dr N Sireau, a trustee, was remunerated for his services as Chief Executive. Permission to pay this salary was received from the Charity Commission in accordance with Clause 5 of the Articles of Association.

2023 2022
£ £
Trustees' salaries 53,779 50,243
Trustees' social security 3,574 4,184
Trustees' pension contributions 2,689 2,527
60,042 56,955

Trustees' expenses

There were no trustees' expenses paid for the year ended 30 June 2023 nor for the year ended 30 June 2022.

Page 16

continued...

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

12. STAFF COSTS

Wages and salaries
Social security costs
Other pension costs		 2023
£
120,237
7,197
6,012
133,446		 2022
£
134,974
10,684
6,493
152,151

The staff costs relating to Key Management Personnel were £101,547 (2022: £122,379).

The average monthly number of employees during the year was as follows:

Chief Executive Officer
Head of Projects and Communications
Head of Patient Support and Welfare
Fundraising Manager
Fundraising and Communications Officer		 2023
1
-
1
-
1
3		 2022
1
1
1
1
-
4

No employees received emoluments in excess of £60,000.

13. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES

Unrestricted
funds
£
INCOME AND ENDOWMENTS FROM
Donations and legacies
20,029
Charitable activities
Research
-
Investment income
330
Total
20,359
EXPENDITURE ON
Raising funds
-
Charitable activities
Research
54,933
Total
54,933
NET INCOME/(EXPENDITURE)
(34,574)
Transfers between funds
(1,257)
Net movement in funds
(35,831)		 Restricted
funds
£
284,849
281,500
-
566,349
600
244,818
245,418
320,931
1,257
322,188		 Total
funds
£
304,878
281,500
330
586,708
600
299,751
300,351
286,357
-
286,357

continued...

Page 17

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

13. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued
Unrestricted Restricted Total
funds funds funds
£ £ £
RECONCILIATION OF FUNDS
Total funds brought forward 251,942 316,442 568,384
TOTAL FUNDS CARRIED FORWARD 216,111 638,630 854,741
14. TANGIBLE FIXED ASSETS
Plant and
machinery
£
COST
At 1 July 2022 12,158
Additions 2,980
Disposals (74)
At 30 June 2023 15,064
DEPRECIATION
At 1 July 2022 9,721
Charge for year 2,029
Eliminated on disposal (24)
At 30 June 2023 11,726
NET BOOK VALUE
At 30 June 2023 3,338
At 30 June 2022 2,437
15. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2023 2022
£ £
Trade debtors 6,000 240
Prepayments and accrued income 3,060 6,813
9,060 7,053

continued...

Page 18

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

16. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR

Trade creditors
Other creditors
Accruals and deferred income		 2023
£
135
686
97,047
97,868		 2022
£
405
686
96,879
97,970
Deferred income comprises: Deferred Received Deferred Income
Income b.f 2022 Income c.f 2022
National AKU Centre 93,555 157,740 93,555 157,740
Total deferred income 93,555 157,740 93,555 157,740

17. MOVEMENT IN FUNDS

Unrestricted funds
General Fund
Designated Fixed Asset Fund
Designated Royalties
Designated Research Fund
Restricted funds
Childwick Trust
Breaking Down Barriers
SOBI
Vitaflo AKU recipe book
Bedfordshire Support and Social Fund
Tyrosine Degradation Study
Patient Workshop
SOFIA-Paediatric Study
Research Fund
European Joint Programme on Rare
Diseases
Patient Registry
Homogentisic Acid Studies
SOBI - Translation
Education Outreach Programme
Website Fund
TOTAL FUNDS		 At 1/7/22
£
101,067
2,437
107
112,500
216,111
58,613
10,116
2,590
5,000
2,032
305,270
10,658
47,095
150,000
(1,591)
29,567
17,280
2,000
-
-
638,630
854,741		 Net
movement
in funds
£
13,292
(2,003)
-
-
11,289
-
(1,188)
(29)
5,000
(2,301)
49,855
19,722
-
-
16,919
(6,798)
(176)
-
(4,575)
701
77,130
88,419		 Transfers
between
funds
£
(3,173)
2,904
-
-
(269)
-
-
-
-
269
-
-
-
-
-
-
-
-
-
-
269
-		 At
30/6/23
£
111,186
3,338
107
112,500
227,131
58,613
8,928
2,561
10,000
-
355,125
30,380
47,095
150,000
15,328
22,769
17,104
2,000
(4,575)
701
716,029
943,160

continued...

Page 19

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

17. MOVEMENT IN FUNDS - continued

Net movement in funds, included in the above are as follows:

Unrestricted funds
General Fund
Designated Fixed Asset Fund
Restricted funds
National AKU Centre
Breaking Down Barriers
SOBI
Vitaflo AKU recipe book
Bedfordshire Support and Social Fund
Tyrosine Degradation Study
Patient Workshop
European Joint Programme on Rare
Diseases
Patient Registry
Homogentisic Acid Studies
Education Outreach Programme
Website Fund
TOTAL FUNDS		 Incoming
resources
£
16,046
-
16,046
169,984
-
-
5,000
-
139,000
19,750
20,555
8,202
-
-
2,500
364,991
381,037		 Resources
Movement
expended
in funds
£
£
(2,754)
13,292
(2,003)
(2,003)
(4,757)
11,289
(169,984)
-
(1,188)
(1,188)
(29)
(29)
-
5,000
(2,301)
(2,301)
(89,145)
49,855
(28)
19,722
(3,636)
16,919
(15,000)
(6,798)
(176)
(176)
(4,575)
(4,575)
(1,799)
701
(287,861)
77,130
(292,618)
88,419

continued...

Page 20

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

17. MOVEMENT IN FUNDS - continued

Comparatives for movement in funds

Unrestricted funds
General Fund
Designated Fixed Asset Fund
Designated Royalties
Designated Research Fund
Restricted funds
National AKU Centre
Childwick Trust
Breaking Down Barriers
SOBI
Vitaflo AKU recipe book
Bedfordshire Support and Social Fund
Tyrosine Degradation Study
Patient Workshop
SOFIA-Paediatric Study
Body to Mind Programme
Research Fund
European Joint Programme on Rare
Diseases
Patient Registry
Homogentisic Acid Studies
SOBI - Translation
TOTAL FUNDS		 At 1/7/21
£
136,052
3,283
107
112,500
251,942
6,623
58,613
10,116
11,256
-
2,032
-
22,409
34,417
3,696
150,000
-
-
17,280
-
316,442
568,384		 Net
movement
in funds
£
(32,113)
(2,461)
-
-
(34,574)
(5,008)
-
-
(8,666)
5,000
-
305,270
(11,751)
12,678
(6,568)
-
(1,591)
29,567
-
2,000
320,931
286,357		 Transfers
between
funds
£
(2,872)
1,615
-
-
(1,257)
(1,615)
-
-
-
-
-
-
-
-
2,872
-
-
-
-
-
1,257
-		 At
30/6/22
£
101,067
2,437
107
112,500
216,111
-
58,613
10,116
2,590
5,000
2,032
305,270
10,658
47,095
-
150,000
(1,591)
29,567
17,280
2,000
638,630
854,741

continued...

Page 21

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

17. MOVEMENT IN FUNDS - continued

Comparative net movement in funds, included in the above are as follows:

Unrestricted funds
General Fund
Designated Fixed Asset Fund
Restricted funds
National AKU Centre
SOBI
Vitaflo AKU recipe book
Tyrosine Degradation Study
Patient Workshop
SOFIA-Paediatric Study
Body to Mind Programme
European Joint Programme on Rare
Diseases
Patient Registry
SOBI - Translation
TOTAL FUNDS		 Incoming
resources
£
20,359
-
20,359
157,740
(360)
5,000
342,770
(10,000)
12,678
-
24,534
26,567
7,420
566,349
586,708		 Resources
Movement
expended
in funds
£
£
(52,472)
(32,113)
(2,461)
(2,461)
(54,933)
(34,574)
(162,748)
(5,008)
(8,306)
(8,666)
-
5,000
(37,500)
305,270
(1,751)
(11,751)
-
12,678
(6,568)
(6,568)
(26,125)
(1,591)
3,000
29,567
(5,420)
2,000
(245,418)
320,931
(300,351)
286,357

Bedfordshire Support and Social Fund

Funding from the Wixamtree Trust supporting AKU patients in Bedfordshire.

Body to Mind Programme

Funding from the National Lottery Community Fund for the provision of a confidential telephone and online counselling service for all patients and family members.

Breaking Down Barriers

Donations from the Sylvia Adams Charitable Trust towards work identified in the "Breaking Down Barriers" action plan. This includes funding Browsealoud, AKU Video and work in the community to raise awareness of AKU amongst ethnic minority groups.

Childwick Trust

Funding from the Childwick Trust into research to understand the evolution of AKU and document the extent of disease in under 16s, with a particular emphasis on studying the existence of ochronosis.

Education Outreach Fund

Funding from Hobson Trust to attend the RCN congress to further the educational outreach program.

European Joint Programme on Rare Diseases

Funding for the rare diseases scientific workshop in Brussels.

Homogentisic Acid Studies

Funding from the Royal Liverpool University Hospital for studies into Homogentisic acid by the Antimicrobial Resistance Centre.

continued...

Page 22

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

17. MOVEMENT IN FUNDS - continued

National AKU Centre

Funding from the Royal Liverpool University Hospital for the Robert Gregory National AKU Centre.

Patient Registry

Crowd source and other funding to support the development and implementation of AKU registry to allow AKU patients and treatments data collection.

Patient Workshop

This is made up of the balances of previous grants which, with agreement of the funders, have been reallocated to spend on the January 2022 patient workshop.

Research fund

This comprises funds received from various sources to fund research into Alkaptonuria.

SOBI

Grants from Swedish Orphan Biovitrium AB, including to produce two videos aimed at educating the public, patients, policymakers and health care professionals about living with AKU and the success of the DevelopAKUre consortium.

SOBI Translation

Funding to translate and information leaflet into eight identified languages for international AKU patients.

SOFIA Paediatric Study

Donation from Trysil Charitable Trust towards a Paediatric Study.

Tyrosine Degradation Study

Funding from individual donors, Pilkintons Charitable Trust and the Hamamelius Trust towards the costs of research into tyrosine degradation and inhibition.

Vitaflo

Sponsorship from Vitaflo for the AKU recipe book.

Website

Funding from Jeans for Genes to rewrite and design the website.

Designated Fixed Asset Fund

Fund designated to cover the remaining value of the fixed assets.

Designated Royalties

Royalties from the sale of a book edited by Dr N Sireau, which were distributed to each contributor to donate to a charity of their choice.

Designated Research

This comprises funds set aside by the Trustees for the research programme at the University of Liverpool.

Transfers between funds

£2,904 was transferred from the general fund to the designated fixed asset funds, representing fixed assets purchased, and disposed of, in the year.

£269 was transferred from the general fund to the Bedfordshire Support and Social Fund to cover the shortfall in funding on the project.

continued...

Page 23

THE ALKAPTONURIA SOCIETY LTD

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2023

18. RELATED PARTY DISCLOSURES

There were no related party transactions for the year ended 30 June 2023.

19. INDEPENDENT EXAMINERS' REMUNERATION

2023 2022
£ £
Fees relating to independent examination 3,492 3,292

Page 24