Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
Registered number: 12099857 Charity number: 1200765
TREAT-NMD Alliance Limited
Annual report 31 July 2024
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Contents
| Page | |
|---|---|
| Reference and administrative details | 1 |
| Trustees' report | 2 - 6 |
| Trustees' responsibilities statement | 7 |
| Independent auditors' report on the financial statements to the members of TREAT-NMD | 8 - 12 |
| Alliance | |
| Consolidated statement of financial activities | 13 |
| Consolidated balance sheet | 14 |
| Company balance sheet | 15 |
| Consolidated statement of cash flows | 16 |
| Notes to the financial statements | 17 - 31 |
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Reference and administrative details Year ended 31 July 2024
| Trustees | Volker Wilhelm Straub |
|---|---|
| Dr James Joseph Dowling | |
| Prof and Dean Kanneboyina Nagaraju (appointed 9 August 2023) | |
| Stacey Anne Lintern (appointed 11 September 2023, resigned 30 January 2024) | |
| Annamaria De Luca (appointed 18 September 2023, resigned 9 December 2023) | |
| Adriana Rus (resigned 9 August 2023) | |
| Company registered number 12099857 Charity registered number 1200765 Registered office C/O Womble Bond Dickinson (UK) LLP The Spark, Draymans Way Newcastle Helix Newcastle upon Tyne, England NE4 5DE Company secretary David Allison Chief executive officer David Allison Independent auditors UNW LLP Chartered Accountants Citygate St James' Boulevard Newcastle upon Tyne NE1 4JE |
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Trustees' report Year ended 31 July 2024
The trustees present their annual report together with the audited financial statements of the charity for the 1 August 2023 to 31 July 2024. The annual report serves the purposes of both a trustees' report and a directors' report under company law. The trustees confirm that the annual report and financial statements of the charitable company comply with the current statutory requirements, the requirements of the charitable company's governing document and the provisions of the Statement of Recommended Practice (SORP) applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) (effective 1 January 2019).
Since the group and the company qualify as small under section 383 of the Companies Act 2006, the group strategic report required of medium and large companies under the Companies Act 2006 (Strategic Report and Directors' Report) Regulations 2013 has been omitted.
Objectives and activities
Policies and objectives
The charity’s objects are specifically restricted to the following:
TREAT-NMD Alliance Ltd exists for the public benefit to advance the health of the public and, ancillary to this, to advance the education of the public, principally, but not exclusively, by:
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promoting research into new medical therapies for the treatment of neuromuscular and other rare diseases provided that the useful results of such research are disseminated to the public at large;
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educating medical practitioners, scientists and other professionals in the care and treatment of persons with neuromuscular and other rare diseases;
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supporting and thereby relieving the needs of and improving the quality of lives of persons with neuromuscular and other rare diseases (and their families and carers) by educating about and promoting accessibility to treatment or by such other means as the trustees shall see fit; and
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raising awareness of (including developments in treatment options for) neuromuscular and other rare diseases.
Strategies for achieving objectives
The strategies for achieving the Group objects can be summarised by the TREAT-NMD ‘strap line’: Inform, Connect, Advance
The activities of the Group can be clustered around and summarised by each of these words. The activities of TREAT-NMD Alliance Limited centre around the provision of education and training events, learning materials and a growing online education platform. These activities inform healthcare professionals as to the impact neuromuscular diseases have on patients and their families, how best to diagnose these diseases, the current best advice regarding pathways of care and provide details of emerging treatments. Family Guides help newly diagnosed patients to understand their disease and what support is available.
TREAT-NMD Services Limited provides a range of commercial services across the drug development pipeline that inform, connect and advance treatments to patients by derisking clinical trials and sharing best practice, providing data and running projects to support studies, clinical trial design, and post authorisation long term follow up, and by running sponsored events - most notably the biennial TREAT-NMD Conference that brings patients, researchers, academics and industry together to share information, connect stakeholders and communities, and to raise awareness of issues and emerging solutions.
Having given due consideration to the Charity Commission guidance relating to public benefit, the trustees are satisfied that the activities of the TREAT-NMD Group continue to deliver substantial benefits in line with the charity’s objects.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Trustees' report (continued) Year ended 31 July 2024
Achievements and performance
Main achievements
To best progress the aims and objectives of the TREAT-NMD Global Network it was determined that, in addition to the commercial trading entity TREAT-NMD Services Limited, a TREAT-NMD Group structure would be established with a UK registered charity, TREAT-NMD Alliance Limited.
In addition to establishing a Board of Trustees of TREAT-NMD Alliance Limited from the Global Network, an advisory committee – NMDAC- was established to provide insight as to global NMD priorities. This had its first meeting in October 2023 and has formed disease specific working groups to best enable strategic feedback to the Alliance Ltd Board.
A key achievement of this year saw TREAT-NMD Services Limited sign the Grant Agreement in November 2023 to commence the PaLaDIn Project in January 2024. This sees TREAT-NMD as the Scientific Co-ordinator for a 9 partner consortium with funding coming from the European Commission (IHI Call 3) and Innovate UK (Grant Guarantee Scheme). The first half of 2024 has seen a focus on establishing the governance arrangements and working through the intricacies of Innovate UK funding with an emphasis on cash flow management. The formal Project Kick Off meeting was held in Rome in March 2024 with all partners represented.
The Global Registry Network held its Annual Curators Meeting in Amsterdam in December 2023 and this saw more than 40 registry curators gather to discuss how best to contribute to drug development through data provision with an emphasis on data quality. The data quality management tool developed by TREAT-NMD was demonstrated and received excellent feedback.
To further establish the correct foundations, the Data Governance and Compliance team have led the efforts to gain ISO27001 accreditation which was achieved early in 2024. This team will support the growing activity of TREAT-NMD Group in data provision and help establish the necessary quality framework and has been expanded to include a Data Engineer who joined in January 2024.
The Project Management Office (PMO) has been working closely with the Real World Evidence (RWE) team to leverage the Global Registry Network data to support a wide range of data projects at various stages of the drug development pipeline.
The use of the network, its governance, the data, the technology and the quality framework were described to the EMA in the TREAT-NMD Services Limited submission to the EMA Qualification process undertaken during last year and this remains an area of ongoing focus.
The status of potential NMD treatments is maturing and this has led to multiple authorisations by the regulator and a greater number of treatments advancing towards authorisation. This is resulting in a growing demand for high quality, patient level Real World Data to support applications and their long term follow up. This is a real challenge globally for providers of RWE and the TREAT-NMD Group are no exceptions. Overseeing a range of Data Quality Improvement Initiatives is the top priority for TGDOC – The TREAT-NMD Global Data Oversight Committee. The PaLaDIn Project will see the delivery of updated datasets in FSHD and Myotonic Dystrophy moving forwards.
Education provision, whether face to face, virtual or through our growing online training offering, remains a fundamental service to the global NMD community. A wide range of events were delivered by TREAT-NMD Alliance Limited throughout the year including a Becker Masterclass in Barcelona in December 2023, an FSHD workshop at the MDA Conference in Dallas, and a Masterclass Week held in the UAE in the Middle East covering DMD, Gene Therapy and SMA to an audience of healthcare professionals from 21 countries.
A range of education projects have been progressed with the DMD Early Diagnosis, the online physiotherapy resource POD-NMD, and the LGMD Family Guide most notable.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Trustees' report (continued) Year ended 31 July 2024
Achievements and performance (continued)
A refresh of the Education and Events team, including a new Head of Education joining in July 2024, has resulted in greater commercial experience and enhanced capacity to deliver a more ambitious education and events programme agreed with the TREAT-NMD Education Committee (TEC).
Plans for future periods
Having established the TREAT-NMD Group structure and associated governance arrangements, the next year will see us respond to the NMD Advisory Board who, having undertaken a gap analysis through a landscape review, are in the process of recommending priorities in each disease area.
Following on from our successful bid to the European Commission IHI Call 3, the PaLaDIn Project needs to move beyond establishing the governance and funding to develop the specification for the central platform, the Interactium, and ensuring that the consortium partners activities are well aligned. The input of the External Advisory Board and the Ethics Board will be fundamental to ensuring that the key priorities are progressed.
An increasing focus on Data Quality will align well with the Regulators’ desire to make better use of Real World Data. This will see TREAT-NMD Group continue to develop technological solutions to assist the global registry network in continuous improvement and stronger links with our growing online education offerings to increase regulator and industry assurance. Moving forwards, TREAT-NMD Group will be aiming to introduce a standard neuromuscular disease dataset to better address industry needs and to ultimately gain EMA Qualification across a range of diseases including SMA, DMD and LGMD.
Strategic relationships remain key to TREAT-NMD and so, as we move into future periods, the aim will be to substantially leverage these to deliver on its key objectives. One such example, our growing relationship with the FSHD Society and inclusion in the Project Mercury Global Task Force, has seen TREAT-NMD Group join meetings in Boston in December 2023 and Denver in June 2024 as we take the leadership role in data provision and registry networks, and in updating partners with respect to Project PaLaDIn.
Although a Global network, like the pharmaceutical industry as a whole, TREAT-NMD Group’s emphasis has traditionally been in Europe and North America. Moving forwards, the organisation is keen to increase its presence globally and to be more inclusive where its support can have a positive impact. This is challenging as gaining industry funding out with traditional markets is difficult and, unfortunately, plans to hold the next biennial TREAT-NMD Conference in Dubai in February 2025 have had to be postponed due to funders concerns related to growing tensions in the Middle East. Even so, TREAT-NMD are keen to take opportunities to encourage greater engagement with stakeholders in the Middle East, Africa and Asia Pacific where they arise.
Financial review
Financial performance
TREAT-NMD Alliance Limited commenced trading in October 2022, with this financial year only the second year of operation. The changes to the Education and Events team during the year meant a lesser programme of events than originally planned, resulting in a deficit in the financial year of £41,568. The income for these events was from medical education grants and sponsorship. These results included specific donations, approved by the Board, relating to European Neuromuscular Council and Myologie Sans Frontieres which totalled £7,700. The charity has retained funds carried forwarded to 2024/25 of £9,643 and educational activities are planned for 2024/25 which are expected to result in a small surplus for the charity.
The larger element of the Group’s income is through commercial activities in the trading subsidiary. TREATNMD Services Limited generated a surplus in the year from these commercial activities and a small element of grant funding.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Trustees' report (continued) Year ended 31 July 2024
The larger element of the Group’s income is through commercial activities in the trading subsidiary. TREATNMD Services Limited generated a surplus in the year from these commercial activities of £42,331 before exceptional costs. The decision to postpone the biennial TREAT-NMD Conference in Dubai in February 2025 resulted in exceptional costs being met in the financial year, which resulted in an overall profit of £32 before corporation tax.
The Group continues to have a positive financial position with retained funds carried forward to the 2024/25 financial year of £837,146. .
Going concern
After making appropriate enquiries, the trustees have a reasonable expectation that the Company has adequate resources to continue in operational existence for the foreseeable future. For this reason, they continue to adopt the going concern basis in preparing the financial statements. Further details regarding the adoption of the going concern basis can be found in the accounting policies.
Reserves policy
The reserves policy for TREAT-NMD Alliance Limited continues to be building levels to support the charity’s objectives. The reserves currently stand at £9,643 after specific donations in the 2023/24 financial year.
TREAT-NMD Services Limited reserves have decreased in the year and currently stand at £827,503. The reserves policy continues to be the build reserves to ensure the Group’s objectives can be delivered if there were any short-term reductions in external funding, to support investments in the Network and to support the PaLaDIn project. The policy in future years will include the donation of an element of surpluses to TREAT-NMD Alliance Limited by way of a corporate Gift Aid donation.
Structure, governance and management
Constitution
TREAT-NMD Alliance Limited is registered as a charitable company limited by guarantee with company number 12099857 and registered charity number 1200765. It is governed by Articles of Association adopted by special resolution on dated 7 November 2023.
Methods of appointment or election of trustees
No formal policy is in place for the appointment or election of trustees. Trustees are recruited and appointed based upon the knowledge, skills and experience judged to be necessary and appropriate for the Group. Trustees are recruited from within the Global Network for disease-specific knowledge and from wider circles for relevant business knowledge. Newcastle University is entitled to appoint one trustee to TREAT-NMD Alliance Limited. New appointments are approved at Board level.
Organisational structure and decision-making policies
The management of the charity is the responsibility of the trustees who are elected under the terms of the constitution, but the effective day-to-day management is delegated to the Chief Executive and staff within the Group.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Trustees' report (continued) Year ended 31 July 2024
Structure, governance and management (continued)
Policies adopted for the induction and training of trustees
No formal policies are in place for the induction and training of trustees. New trustees are provided with key documents and policies, including terms of reference and expectations. Trustees are able to have induction meetings with key staff, including the Chief Executive, if required.
Risk management
The trustees have high level oversight of risks with the higher risk items on the Risk Register reviewed quarterly at the Board meetings of both charity and trading companies. The detailed risk management in operations and finance is managed on a day to day basis by the Chief Executive and senior staff in the Group.
Disclosure of information to auditors
Each of the persons who are trustees at the time when this trustees' report is approved has confirmed that:
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so far as that trustee is aware, there is no relevant audit information of which the charitable group's auditors are unaware, and
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that trustee has taken all the steps that ought to have been taken as a trustee in order to be aware of any relevant audit information and to establish that the charitable group's auditors are aware of that information.
Auditors
The auditors, UNW LLP, have indicated their willingness to continue in office. The designated trustees will propose a motion reappointing the auditors at a meeting of the trustees.
Approved by order of the members of the board of trustees on 12 March 2025 and signed on their behalf by:
Volker Wilhelm Straub Director
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Statement of trustees' responsibilities Year ended 31 July 2024
The trustees (who are also the directors of the company 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).
Company law requires the trustees to prepare financial statements for each financial . 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 group and the company and of their incoming resources and application of resources, including their income and expenditure, for that period. In preparing these financial statements, the trustees are required to:
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select suitable accounting policies and then apply them consistently;
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observe the methods and principles of the Charities SORP (FRS 102);
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make judgments and accounting estimates that are reasonable and prudent;
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state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements;
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prepare the financial statements on the going concern basis unless it is inappropriate to presume that the group will continue in business.
The trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the group and the company's transactions and disclose with reasonable accuracy at any time the financial position of the group and the 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 group and the company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
Approved by order of the members of the board of trustees on 12 March 2025 and signed on its behalf by:
Volker Wilhelm Straub Director
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
Independent auditors' report to the members of TREAT-NMD Alliance Limited
Opinion
We have audited the financial statements of TREAT-NMD Alliance Limited ('the parent charitable company') and its subsidiaries ('the group') for the year ended 31 July 2024 which comprise the consolidated statement of financial activities, the consolidated balance sheet, the company balance sheet, the consolidated statement of cash flows and the related notes, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' (United Kingdom Generally Accepted Accounting Practice).
In our opinion the financial statements:
-
give a true and fair view of the state of the group's and of the parent charitable company's affairs as at 31 July 2024 and of the group's incoming resources and application of resources, including its income and expenditure for the year then ended;
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have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
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have been prepared in accordance with the requirements of the Companies Act 2006 and the Charities Act 2011.
Basis for opinion
We conducted our audit in accordance with International Standards on Auditing (UK) ('ISAs (UK)') and applicable law. Our responsibilities under those standards are further described in the 'Auditors' responsibilities for the audit of the financial statements' section of our report. We are independent of the group in accordance with the ethical requirements that are relevant to our audit of the financial statements in the United Kingdom, including the Financial Reporting Council's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.
Conclusions relating to going concern
In auditing the financial statements, we have concluded that the trustees' use of the going concern basis of accounting in the preparation of the financial statements is appropriate.
Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the group's or the parent charitable company's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
Independent auditors' report to the members of TREAT-NMD Alliance Limited (continued)
Other information
The other information comprises the information included in the annual report other than the financial statements and our auditors' report thereon. The trustees are responsible for the other information contained within the annual report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the course of the audit, or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.
We have nothing to report in this regard.
Opinion on other matters prescribed by the Companies Act 2006
In our opinion, based on the work undertaken in the course of the audit:
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the information given in the Trustees' report for the financial year for which the financial statements are prepared is consistent with the financial statements.
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the Trustees' report has been prepared in accordance with applicable legal requirements.
Matters on which we are required to report by exception
In the light of our knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees' report.
We have nothing to report in respect of the following matters in relation to which Companies Act 2006 requires us to report to you if, in our opinion:
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the parent charitable company has not kept adequate and sufficient accounting records, or returns adequate for our audit have not been received from branches not visited by us; or
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the parent charitable company financial statements are not in agreement with the accounting records and returns; or
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certain disclosures of trustees' remuneration specified by law are not made; or
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we have not received all the information and explanations we require for our audit; or
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the trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies' exemptions in preparing the Trustees' report and from the requirement to prepare a Strategic report.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
Independent auditors' report to the members of TREAT-NMD Alliance Limited (continued)
Responsibilities of trustees
As explained more fully in the trustees' responsibilities statement, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.
In preparing the financial statements, the trustees are responsible for assessing the group's and the parent charitable company's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the group or the parent charitable company or to cease operations, or have no realistic alternative but to do so.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
Independent auditors' report to the members of TREAT-NMD Alliance Limited (continued)
Auditors' responsibilities for the audit of the financial statements
Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditors' report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.
Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:
We identified areas of law and regulations that could reasonably be expected to have a material effect on the financial statements from our general and sector experience and through discussions with the directors and other management (as required by Auditing Standards) and from inspection of the charitable company's legal correspondence and we discussed with the directors and other management the policies and procedures regarding compliance with the laws and regulations. We communicated identified laws and regulations within our team and remained alert to any indications of non-compliance throughout the audit.
Firstly, the charitable company is subject to laws and regulations that directly affect the financial statements including financial reporting legislation's (including related companies legislation), distributable profits legislation and taxation legislation and we have assessed the extent of compliance with these laws and regulations as part of our procedures on the related financial statement items.
Secondly, the charitable company is subject to many other laws and regulations where the consequences of non-compliance could have a material effect on amounts or disclosures in the financial statements, for instance through the imposition of fines and litigation. We identified the following areas as those most likely to have such an effect; health and safety, employment law, data protection, environmental law and certain aspects of company legislation, recognising the nature of the charitable company's activities. Auditing Standards limit the required audit procedures to identify non-compliance with these laws and regulations to enquiry of the directors and other management and inspection of regulatory and legal correspondence, if any. Through these procedures we have not become aware of any actual or suspected non-compliance material to the financial statements.
Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.
A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditors' report.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
Independent auditors' report to the members of TREAT-NMD Alliance Limited (continued)
Use of our report
This report is made solely to the charitable company's trustees, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006, and to the charitable company's trustees, as a body, Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charitable company's trustees those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and its members, as a body, for our audit work, for this report, or for the opinions we have formed.
Anne Hallowell BSc DChA FCA (Senior Statutory Auditor) for and on behalf of UNW LLP, Statutory Auditor Chartered Accountants Newcastle upon Tyne
12 March 2025
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Consolidated Statement of financial activities (incorporating income and expenditure account) Year ended 31 July 2024
| Note Income from: Charitable activities 4 Other trading activities 5 Interest receivable 6 Total income Expenditure on: Raising funds 7 Charitable activities 7 Total expenditure Net movement in funds Reconciliation of funds: Total funds brought forward Net movement in funds Total funds carried forward |
Unrestricted funds 2024 £ 478,182 1,999,150 1,719 2,479,051 2,265,338 253,077 2,518,415 (39,364) 876,510 (39,364) 837,146 |
Total funds 2024 £ 478,182 1,999,150 1,719 2,479,051 2,265,338 253,077 2,518,415 (39,364) 876,510 (39,364) 837,146 |
Total funds 2023 £ 468,310 1,778,813 - |
|---|---|---|---|
| 2,247,123 | |||
| 1,715,916 177,005 |
|||
| 1,892,921 | |||
| 354,202 | |||
| 522,308 354,202 |
|||
| 876,510 |
The notes on pages 17 to 31 form part of these financial statements.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Consolidated balance sheet
At 31 July 2024
| Note Fixed assets Tangible assets 13 Current assets Debtors 15 Cash at bank and in hand Creditors: amounts falling due within one year 16 Net current assets Creditors: amounts falling due after more than one year 17 Total net assets Charity funds Restricted funds 18 Unrestricted funds 18 Total funds |
884,476 1,116,176 2,000,652 (1,020,772) |
2024 £ 6,596 6,596 979,880 (149,330) 837,146 - 837,146 837,146 |
585,814 725,664 1,311,478 (441,032) |
2023 £ 6,064 |
|---|---|---|---|---|
| 6,064 870,446 - |
||||
| 876,510 | ||||
| - 876,510 |
||||
| 876,510 |
The trustees acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and preparation of financial statements.
The financial statements have been prepared in accordance with the provisions applicable to entities subject to the small companies regime.
The financial statements were approved and authorised for issue by the trustees on 12 March 2025 and signed on their behalf by:
Volker Wilhelm Straub
Director
The notes on pages 17 to 31 form part of these financial statements.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Balance sheet
At 31 July 2024
| Note Fixed assets Investments 14 Current assets Debtors 15 Cash at bank and in hand Creditors: amounts falling due within one year 16 Net current assets Total assets less current liabilities Total net assets Charity funds Restricted funds 18 Unrestricted funds 18 Total funds |
38,834 499,811 538,645 (529,007) |
2024 £ 5 5 9,638 9,643 9,643 - 9,643 9,643 |
227,886 116,278 344,164 (292,958) |
2023 £ 5 |
|---|---|---|---|---|
| 5 51,206 |
||||
| 51,211 | ||||
| 51,211 | ||||
| - 51,211 |
||||
| 51,211 |
The company's net movement in funds for the year was £(41,568) (2023: £51,211).
The trustees acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and preparation of financial statements.
The financial statements have been prepared in accordance with the provisions applicable to entities subject to the small companies regime.
The financial statements were approved and authorised for issue by the trustees on 12 March 2025 and signed on their behalf by:
Volker Wilhelm Straub
The notes on pages 17 to 31 form part of these financial statements.
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Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Consolidated statement of cash flows Year ended 31 July 2024
| Note Cash flows from operating activities Net cash used in operating activities 19 Cash flows from investing activities Purchase of tangible fixed assets Net cash used in investing activities Cash flows from financing activities Net cash provided by financing activities Change in cash and cash equivalents in the year Cash and cash equivalents at the beginning of the year Cash and cash equivalents at the end of the year 20 The notes on pages 17 to 31 form part of these financial statements |
2024 £ 395,306 (4,794) (4,794) - 390,512 725,664 1,116,176 |
2023 £ (143,068) (2,093) (2,093) - (145,161) 870,825 725,664 |
|---|---|---|
Page 16
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
1. General information
The company is a company limited by guarantee. The members of the company are the trustees named on page 1. In the event of the company being wound up, the liability in respect of the guarantee is limited to £1 per member of the company.
2. Accounting policies
2.1 Basis of preparation of financial statements
The financial statements 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), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006.
TREAT-NMD Alliance Limited 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.
The consolidated statement of financial activities (SOFA) and consolidated balance sheet consolidate the financial statements of the company and its subsidiary undertaking. The results of the subsidiary are consolidated on a line by line basis.
The company has taken advantage of the exemption allowed under section 408 of the Companies Act 2006 and has not presented its own statement of financial activities in these financial statements.
2.2 Basis of consolidation
The consolidated statement of financial activities (SOFA) and consolidated balance sheet consolidate the financial statements of the group and its subsidiary undertaking. The results of the subsidiary are consolidated on a line by line basis.
The group has taken advantage of the exemption allowed under section 408 of the Companies Act 2006 and has not presented its own statemet of financial activities in these financial statements.
2.3 Going concern
The group meets its working capital requirements through its cash balances and operating cash flows.
The trustees have prepared financial forecasts which, having regard for reasonably possible changes in trading performance as a result of current economic environment, indicate that the charitable group will maintain sufficient financial headroom to enable it to continue meeting its liabilities as they fall due in the normal course of business for at least the next twelve months following approval of these financial statements.
After making enquiries, the trustees have a reasonable expectation that the charitable company has adequate resources to continue in opertional existence for the foreseeable future. Accordingly, they continue to adopt the going concern basis in preparing the financial statements.
Page 17
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
Notes to the financial statements Year ended 31 July 2024
TREAT-NMD Alliance Limited
2. Accounting policies (continued)
2.4 Income
All income is recognised once the company has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably.
Other income is recognised in the period in which it is receivable and to the extent the goods have been provided or on completion of the service.
Trading income comprises revenue recognised in respect of services supplied during the year, net of discounts and excluding Value Added Tax.
Trading income is recognised as services are provided. Where a contract has only been partially completed at the balance sheet date, turnover represents the fair value of the service provided to date based on the stage of completion of the contract activity at the balance sheet date. Where payments are received from customers in advance of services provided, the amounts are recorded as deferred income and included as part of creditors due within one year.
2.5 Expenditure
Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, 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 classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset’s use.
Expenditure on charitable activities is incurred on directly undertaking the activities which further the group's objectives, as well as any associated support costs.
2.6 Employee benefits
Short-term benefits
Short-term benefits, including holiday pay and other similar non-monetary benefits, are recognised as an expense in the period in which the service is received.
Defined contribution pension plan
The charitable company operates a defined contribution pension plan for its employees. Contributions are recognised as an expense when they fall due. Amounts due but not yet paid are included within creditors on the balance sheet. The assets of the plan are held separately from the company in independently administered funds.
2.7 Foreign currency
The charitable company's functional currency is the pound sterling.
Transactions and balances
Transactions in foreign currencies are translated into sterling using the spot exchange rates at the dates of the transactions. At each period end, foreign currency monetary assets and liabilities are translated using the closing rate. Foreign exchange gains and losses are recognised in the statement of financial activities. .
Page 18
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
2. Accounting policies (continued)
2.8 Tangible fixed assets and depreciation
Tangible fixed assets are stated at cost, less accumulated depreciation and accumulated impairment losses. Cost includes the original purchase price plus any further costs directly attributable to bringing the asset to its working condition for its intended use.
Depreciation is provided on all tangible fixed assets at rates calculated to write off the cost of fixed assets, less their estimates residual value, over their estimates useful lives as follows:
Fixtures and fittings - 25% straight line Computer equipment - 25% straight line
Asset residual values and useful lives are reviewed at the end of each reporting period, and adjusted if appropriate. The effect of any change is accounted for prospectively.
2.9 Investments
Fixed asset investments are a form of financial instrument and are initially recognised at their transaction cost and subsequently measured at fair value at the balance sheet date, unless the value cannot be measured reliably in which case it is measured at cost less impairment. Investment gains and losses, whether realised or unrealised, are combined and presented as ‘Gains/(Losses) on investments’ in the consolidated statement of financial activities.
Investments in subsidiaries are valued at cost less provision for impairment.
2.10 Debtors
Trade and other debtors are recognised at the settlement amount after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.
2.11 Cash at bank and in hand
Cash at bank and 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 of the deposit or similar account.
2.12 Liabilities and provisions
Liabilities are recognised when there is an obligation at the balance sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably.
Liabilities are recognised at the amount that the company anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide.
Provisions are measured at the best estimate of the amounts required to settle the obligation. Where the effect of the time value of money is material, the provision is based on the present value of those amounts, discounted at the pre-tax discount rate that reflects the risks specific to the liability. The unwinding of the discount is recognised in the consolidated statement of financial activities as a finance cost.
Page 19
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
2. Accounting policies (continued)
2.13 Financial instruments
The charitable group only enters into basic financial instruments transactions that result in the recognition of financial assets and liabilities like trade and other accounts receivable and payable and cash and bank balances.
All such instruments are initally recognised at transaction price, unless the arrangement constitutes a financing transaction, in which case the transaction is measured at the present value of the future receipts discounted at a market rate of interest. All financial instruments are subsequently carried at amortised cost using the effective interest method.
2.14 Fund accounting
General funds are unrestricted funds which are available for use at the discretion of the trustees in furtherance of the general objectives of the group and which have not been designated for other purposes.
Investment income, gains and losses are allocated to the appropriate fund.
3. Critical accounting estimates and areas of judgment
Estimates and judgments are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances.
In preparing these financial statements the trustees d not consider there were any significant areas of judgement or accounting estimates that were required in applying thecharity's accounting policies as set out above.
Page 20
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
| 4. Income from charitable activities Unrestricted funds 2024 £ Educational activities income 478,182 Unrestricted funds 2023 £ Educational activities income 468,310 5. Income from other trading activities Income from non charitable trading activities Unrestricted funds 2024 £ Subsidiary trading to third parties 1,999,150 Unrestricted funds 2023 £ Subsidiary trading to third parties 1,778,813 |
Total funds 2024 £ 478,182 |
|---|---|
| Total funds 2023 £ 468,310 |
|
| Total funds 2024 £ 1,999,150 |
|
| Total funds 2023 £ 1,778,813 |
Page 21
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
6. Interest receivable
| Unrestricted | Total | Total | |
|---|---|---|---|
| funds | funds | funds | |
| 2024 | 2024 | 2023 | |
| £ | £ | £ | |
| Interest receivable | 1,719 | 1,719 | - |
7. Expenditure on raising funds
Subsidiary trading expenses
| Unrestricted funds 2024 £ Cost of sales 848,801 Administration expenses 426,892 Tax credit (12,898) Administration staff costs 1,002,543 2,265,338 Unrestricted funds 2023 £ Administration expenses 927,793 Tax credit 27,336 Administration staff costs 760,787 1,715,916 |
Total funds 2024 £ 848,801 426,892 (12,898 1,002,543 |
|---|---|
| 2,265,338 | |
| Total funds 2023 £ 927,793 27,336 760,787 |
|
| 1,715,916 |
Page 22
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
8. Expenditure on charitable activities
| Unrestricted funds 2024 £ Costs of activities 239,215 Support costs 13,862 253,077 Unrestricted funds 2023 £ Costs of activities 175,328 Support costs 1,677 177,005 |
Total funds 2024 £ 239,215 13,862 |
|---|---|
| 253,077 | |
| Total funds 2023 £ 175,328 1,677 |
|
| 177,005 |
9. Analysis of expenditure by activities
| Educational activity costs Educational activity costs |
Direct costs 2024 £ 239,215 Activities undertaken directly 2023 £ 175,328 |
Support costs 2024 £ 13,862 Support costs 2023 £ 1,677 |
Total funds 2024 £ 253,077 |
|---|---|---|---|
| Total funds 2023 £ 177,005 |
Page 23
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
9. Analysis of expenditure by activities (continued)
Analysis of support costs
| General Bank fees Legal fees Foreign exchange 10. Auditors' remuneration Fees payable to the charitable company's auditor for the audit of the charitable company's annual accounts |
Total funds 2024 £ 7,493 871 4,303 1,195 13,862 2024 £ 13,000 |
Total funds 2023 £ - 156 - 1,521 |
|---|---|---|
| 1,677 | ||
| 2023 £ 12,500 |
11. Charitable company results
The results of the charitable company are shown below:
| 2024 | 2023 | |
|---|---|---|
| Income | 478,182 | 468,310 |
| Expenditure | (519,750) | (417,099) |
All funds were unrestricted during the year.
Page 24
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
12. Staff costs
| Wages and salaries Social security costs Contribution to defined contribution pension schemes |
Group 2024 £ 872,952 92,718 36,873 1,002,543 |
Group 2023 £ 676,963 69,462 14,362 |
|---|---|---|
| 760,787 |
The charitable company has no staff costs (2023: same).
The average number of persons employed by the charitable group during the year was as follows:
| Group | Group |
|---|---|
| 2024 | 2023 |
| No. | No. |
| 19 | 15 |
The charitable company has no employees (2023: same).
The number of employees whose employee benefits (excluding employer pension costs) exceeded £60,000 was:
| Group | Group | |
|---|---|---|
| 2024 | 2023 | |
| No. | No. | |
| In the band £60,001 - £70,000 | 1 | 1 |
| In the band £70,001 - £80,000 | 1 | - |
| In the band £100,001 - £110,000 | - | 1 |
| In the band £160,001 - £170,000 | 1 | - |
The key management personnel of the charitable group comprise the chief executive officer, head of education and events, data governance manager, head of projects and risk and global registries and research manager. The total employee benefits of the key management personnel of the charitable group were £423,443 (2023: £291,257).
Page 25
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
13. Tangible fixed assets
Group
| Cost At 1 August 2023 Additions Disposals At 31 July 2024 Depreciation At 1 August 2023 Charge for the year On disposals At 31 July 2024 Net book value At 31 July 2024 At 31 July 2023 |
Fixtures and fittings £ 1,571 293 - 1,864 464 423 - 887 977 1,107 |
Computer equipment £ 13,610 4,501 (714) 17,397 8,653 3,839 (714) 11,778 5,619 4,957 |
Total £ 15,181 4,794 (714) 19,261 9,117 4,262 (714) 12,665 6,596 6,064 |
|---|---|---|---|
Page 26
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
14. Fixed asset investments
| Company Cost At 1 August 2023 At 31 July 2024 Net book value At 31 July 2024 At 31 July 2023 |
Investments in subsidiary companies £ 5 |
|---|---|
| 5 | |
| 5 | |
| 5 |
Principal subsidiaries
The following was a subsidiary undertaking of the company:
| Name | Company | Registered office or | Class of | Holding | Included in |
|---|---|---|---|---|---|
| number | principal place of | shares | consolidation | ||
| business | |||||
| TREAT-NMD | 12110979 | The Spark | Ordinary | 100% | Yes |
| Services Ltd | Draymans Way | ||||
| Newcastle Helix | |||||
| Newcastle Upon Tyne | |||||
| England | |||||
| NE4 5DE |
The financial results of the subsidiary for the year were:
| Name | Income | Expenditure | Profit/(Loss) | Net assets |
|---|---|---|---|---|
| £ | £ | for the year | £ | |
| £ | ||||
| TREAT-NMD Services Ltd | 2,150,670 | (2,278,236) | 2,204 | 827,508 |
Page 27
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
15. Debtors
| Group 2024 £ Trade debtors 609,968 Other debtors 2,373 Prepayments and accrued income 226,841 Deferred tax 3,307 VAT recoverable 41,987 884,476 16. Creditors: amounts falling due within one year Group 2024 £ Trade creditors 174,332 Amounts owed to group undertakings - Corporation tax - Other taxation and social security 28,955 Other creditors 12,282 Accruals and deferred income 805,203 1,020,772 Group 2024 £ Deferred income at 1 August 2023 294,327 Resources deferred during the year 954,533 Amounts released from previous periods (294,327) 954,533 |
Group 2023 £ 376,726 - 198,548 1,136 9,404 585,814 Group 2023 £ 40,336 - 72,125 21,797 12,447 294,327 441,032 Group 2023 £ - 294,327 - 294,327 |
Company 2024 £ 10,000 - 28,271 - 563 38,834 Company 2024 £ 750 169,631 - - - 358,626 529,007 Company 2024 £ - 358,626 - 358,626 |
Company 2023 £ 227,886 - - - - 227,886 Company 2023 £ - 292,958 - - - - |
|---|---|---|---|
| 292,958 | |||
| Company 2023 £ - - - |
|||
| - |
Page 28
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
17. Creditors: amounts falling due after more than one year
| Group | Group | |
|---|---|---|
| 2024 | 2023 | |
| £ | £ | |
| Accruals and deferred income | 149,330 | - |
Accruals and deferred income relates to a grant receipt received during the year, which is ringfenced for future expenditure and is held in a separate bank account.
18. Statement of funds
Statement of funds - current year
| Balance at 1 August 2023 £ Unrestricted funds General Funds 876,510 Statement of funds - prior year Balance at 1 August 2022 £ Unrestricted funds General Funds 522,308 |
Income £ 2,479,051 Income £ 2,247,123 |
Expenditure £ Balance at 31 July 2024 £ (2,518,415) 837,146 Expenditure £ Balance at 31 July 2023 £ (1,892,921) 876,510 |
Expenditure £ Balance at 31 July 2024 £ (2,518,415) 837,146 Expenditure £ Balance at 31 July 2023 £ (1,892,921) 876,510 |
|---|---|---|---|
| Balance at 31 July 2023 £ 876,510 |
Page 29
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
19. Reconciliation of net movement in funds to net cash flow from operating activities
| Net income/expenditure for the period (as per Statement of Financial Activities) Adjustments for: Depreciation charges Impairment of intangible assets Increase in debtors Increase/(decrease) in creditors Tax charge Net cash provided by/(used in) operating activities Analysis of cash and cash equivalents Cash in hand |
Group 2024 £ (39,364) 4,262 - (375,861) 765,515 - 354,552 Group 2024 £ 1,116,176 |
Group 2023 £ 354,202 |
|---|---|---|
| 3,737 30,000 (507,348) (93,184) 69,525 |
||
| (143,068) | ||
| Group 2023 £ 725,664 |
20. Analysis of cash and cash equivalents
The cash balance of £1,116,176 includes a grant receipt £149,330 (2023: £nil) which is ringfenced for future expenditure and is included in deferred income.
21. Analysis of changes in net debt
| At | 1 August | At 31 July | ||
|---|---|---|---|---|
| 2023 | Cash flows | 2024 | ||
| £ | £ | £ | ||
| Cash at bank and in hand | 725,664 | 390,512 | 1,116,176 |
22. Pension commitments
The group operates a defined contributions pension scheme. The assets of the scheme are held separately from those of the group in an independently administered fund. The pension cost charge represents contributions payable by the company to the fund and amounted to £36,873 (2023: £14,362) . Contributions totalling £3,467 (2023: £10,606) were payable to the fund at the balance sheet date and are included in creditors.
Page 30
Docusign Envelope ID: 3EFF0CB5-67B3-47C1-AAD3-3DA620B2D7DD
TREAT-NMD Alliance Limited
Notes to the financial statements Year ended 31 July 2024
23. Related party transactions
During the year honorarium payments totalling £734 (2023: £1,500) were paid to J Dowling, trustee, for attendance at TACT meetings.
During the year honorarium payments toalling £nil (2023: £750) were paid to J Porter, a director of TREAT-NMD Services, with the previos period payments being made for attendance at TACT meetings.
During the year honorarium payments toalling £500 (2023: £nil) were paid to A De Luca, trustee, for attendance at TACT meetings.
During the year, payments of £27,232 (2023: £18,666) were paid to Muscular Dystrophy Association USA, a charity in which S Hesterlee has signifcant influence, in relation to a gene therapy masterclass.
During the year, payments of £nil (2023: £8,725) were paid to World Muscle Society, of which V Straub has significant influence, in relation to WMS Congress.
During the year, payments totalling £7,000 (2023: £14,108) were paid to Newcastle University, an organisation with significant influence.
Page 31