OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2024-07-31-accounts

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

Page 1

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:

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.

Page 2

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.

Page 3

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.

Page 4

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.

Page 5

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:

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

Page 6

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:

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

Page 7

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:

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.

Page 8

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:

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:

Page 9

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.

Page 10

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.

Page 11

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

Page 12

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.

Page 13

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.

Page 14

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.

Page 15

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