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← The International Alliance Of Als / MND Associations

2025-06-30-accounts

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Company registration number 3739783 Charity registration number 1079504

The International Alliance of ALS/MND Associations

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Directors’ Report and Financial

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Statements for the year ended 30 June 2025

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The International Alliance of ALS/MND Associations

Reference and Administrative details

The International Alliance of ALS/MND Associations is a company limited by guarantee and a registered charity governed by its memorandum and Articles of Association. The Directors of the charity are its Trustees for the purposes of charity law and throughout this report are collectively referred to as the Directors. Day to day management of the charity is undertaken by Catherine Cummings. ‘ Company registration number: 3739783 Charity registration number: 1079504 .

Directors

Calaneet Balas (appointed Chair 01/01/2019) Jennifer Bedford (appointed 31/12/2024) Mary Ellen Bench (appointed 01/01/2025) Angela Harris (appointed 01/01/2024) Tammy Moore (appointed 01/01/2024) Evy Reivers (appointed 01/01/2025) Marcela Santos (appointed 01/01/2021) Clare Sullivan (appointed 01/01/2025) Yohei Yamada (appointed 01/01/2023) Riccardo Zuccarino (appointed 01/01/2025)

Pablo Aquino (resigned 31/12/2024) Lung Kuo (resigned 31/12/2024) Gudjon Sigurdsson (resigned 31/12/2024) Gethin Thomas (resigned 05/03/2025) Sabine Turgeman (resigned 31/12/2024) Dr Hilmi Uysal (resigned 31/12/2024)

Principal and Registered Office

Francis Crick House 6 Summerhouse Road Moulton Park Northampton NN3 6BJ

Professional Advisers

Independent Examiner Dunkley’s Accountants Woodlands Grange Woodlands Lane Bradley Stoke BS32 4JY

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Solicitor Bates Wells Brathwaite 10 Queen Street Place London EC4R 1BE Bankers Lloyds Bank PLC 2George Row Northampton, NN1 1DJ

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The International Alliance of ALS/MND Associations

For the Year Ended 30 June 2025

The Directors present their report together with the financial statements for the year ended 30 June 2025. Reference and administrative information set out on page 1 forms part of this report. The financial statements comply with current statutory requirements, the Memorandum and Articles of Association and the Statement of Recommended Practice Accounting and Reporting by Charities.

Objectives

The International Alliance of ALS/MND Associations (the Alliance) is the lead body for organisations and associations representing people living with Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS).

Member organisations and associations provide direct support and services for people living with the disease including Care, Research, Advocacy and Public Policy.

Our purpose, vision and value proposition are outlined below:

PURPOSE: The Alliance is a global network of ALS/MND associations informed by PALS/CALS, that builds capability for its members and connects to external stakeholders.

VISION: A World Free of ALS

VALUE PROPOSITION: We help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, internal, and external stakeholders connect.

Our two main strategic focuses are Community and Capability, and we do this as we build our Capacity. The International Alliance aspires to:

Build Community

Build a global community. Build membership in countries and regions which do not yet have membership representation. Coordinate the global voice of PALS & CALS. Be the gateway for relevant external stakeholders.

Build Capability

Build capability in member associations. Deliver professional development (PD) that includes the annual Alliance Meeting, but also provides Member value throughout the year. Make our members stronger to advocate on behalf of individuals at the local level and provide a platform for global issues. Increase research capability globally. Identify, promote, and support meaningful and timely in person and virtual connections between Members. Facilitate member peer-to peer support. Be a gateway for external stakeholders to the network of domestic associations.

Build Capacity

Build Capacity Build internal capacity at the Alliance. Enhance Member intelligence to deepen the relationship with and knowledge of Members to better understand their needs, offerings and aspirations. Develop our human, technology and financial resources to be able to deliver member value and ensure sustainability of a viable Alliance into the future. Focus on disseminating information in a concise manner that delivers the value-add of the Alliance. Build capacity to harmonize Member communications across the organization and present a strong brand for the Alliance.

Achievements

The Alliance continues to find the balance between allocation of our limited resources and maximizing services to the ALS Community. We are an enabler of global Collaboration on ALS/MND for Education, Advocacy and Research.

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The International Alliance of ALS/MND Associations

Directors’ Report For the Year Ended 30 June 2025

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  - The Alliance research strategy is to enable global collaboration. We have added a Research Directors Forum that is comprised of member organization’s Research Directors.

  - The Allied Professionals Forum (APF) has expanded to be a two-day meeting open to allied health professionals which provides an opportunity for new and emerging researchers in care and management of ALS/MND to present to an audience of fellow professionals. Masterclasses on specific topics relevant to health professionals have been added to the forum. A Day in the Life Suite has been added to showcase technology and information for people living with ALS/MND.

  - ALSMND Connect is a four-hour meeting which brings leading researchers and people affected by the disease together in a forum where researchers can describe the most recent advances in clinical and scientific research. This event is live streamed and archived for future viewing.

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The International Alliance of ALS/MND Associations Directors’ Report For the Year Ended 30 June 2025

Our achievements for the year included:

Review of Financial Activities

The charity is a company limited by guarantee, governed by its Memorandum and Articles of Association, and is registered with the Charity Commission (Charity No. 1079504).

The results for the year to 30 June 2025 are set out in the Statement of Financial Activities, as shown on page 8.

There were net resources of £75,337 (2023.24 — £112,978). The Directors are satisfied that the charity's financial position is adequate to fulfil its obligations. ;

The Income in year £699,821 (2023.24 £595,025) — there were no new income streams

The expenditure in year £737,463 (2023.24 £693,541) — The charity expenditure was reflective of prior years with no new grants types issued (generic inflationary increase).

The format of the financial statements is in accordance with Statement of Recommended Practice - Accounting and Reporting by Charities.

The Reserves Policy requires the Directors to hold sufficient funds to cover the following:

Designated Funds - £0 (2023.24 £0)

Funds within the Operating Reserve that have been identified by the Board to be used for a specific purpose, and where the Board maintains flexibility to change the purpose if circumstances require reconsideration.

Restricted Funds - £0 (2023.24 £0) Grants or contributions received for a specific goal or purpose which cannot be accessed for any purpose other than that for which they are intended.

Operating Reserve - £75,337 (2023.24 £112,978) The Operating Reserve is intended to provide long-term stability by ensuring that sufficient funds are available to cover unexpected, unbudgeted or one-time costs. The Operating Reserve may also be used to cover expenses resulting from anticipated revenues or grants being delayed or cancelled.

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The International Alliance of ALS/MND Associations

Directors’ Report For the Year Ended 30 June 2025 Plans for future periods

Our goals for the year included:

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The International Alliance of ALS/MND Associations

Directors’ Report For the Year Ended 30 June 2025 Risk Management

The Directors have in place a formal risk management process and risk register to assess business risk and implement risk management strategies. They are able to report that all identifiable major risks to which the charity is exposed have been regularly reviewed in respect of potential impact, likelihood of occurrence and means of mitigation.

The following have been identified as the key risks:

The Directors are pleased to report that systems have been established to properly manage these risks.

Public Benefit

The trustees have referred to the guidance contained in the Charity Commission's general guidance on public benefit when reviewing the charity's aims and objectives and in planning its future activities. The Alliance provides unrestricted access to information and resources to all people and organisations associated with ALS/MND, and additional opportunities to those organisations who become members of the Alliance. The Directors believe that the Alliance and its operations satisfy the public benefit requirement of the Charities Act 2006.

Assets

The assets of the charity are held in pursuance of the governing document's objectives and are represented by unrestricted funds in the sum of £75,337 and restricted funds of £0.00.

Structure, Governance & Management

Directors

For the purposes of company law, the Directors listed on page 1 are the Directors of the company.

Directors are elected by the Alliance's membership at the Annual General Meeting. The maximum number of Directors is eleven and the minimum number is five.

Induction and ongoing training for Directors is provided through the Alliance solicitors and advice and guidance from existing Directors. An orientation session was held in January 2024 facilitated internally on the duties of Directors.

Directors' Responsibilities for the Financial Statements

Company law requires the Directors to prepare financial statements for each financial year that give a true and fair view of financial activities of the charitable company during the year and of its financial position at the end of the year.

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The International Alliance of ALS/MND Associations

Directors’ Report For the Year Ended 30 June 2025

Directors' Responsibilities for the Financial Statements

In preparing those financial statements, the Directors should follow best practice and:

The Directors are responsible for keeping adequate accounting records which disclose with reasonable accuracy the financial position of the charitable company which enable them to ascertain their financial position and to ensure that the financial statements comply with the Companies Act 2006, the Charities Act 2011 and regulations there under. They are also responsible for safeguarding the assets of the charitable company and for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Members of the charitable company guarantee to contribute an amount not exceeding £1 to the assets of the charitable company in the event of winding up. The total number of such guarantees at 30 June 2025 was 66. Members have no beneficial interest in the charitable company.

Appointment of Independent Examiner

A resolution to appoint Dunkleys Accountants as the examiner will be proposed at the 2025 Annual General Meeting.

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Calaneet Balas

Chair

Date: November 13, 2025

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The International Alliance of ALS/MND Associations

Independent Examiner's Report to the Directors

Independent examiner's report to the trustees of The International Alliance of ALS/MND Associations I report to the charity trustees on my examination of the accounts of The International Alliance of ALS/MND Associations for the year ended 30 June 2025.

Responsibilities and basis of report

As the charity trustees of the Trust you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

I report in respect of my examination of the Trust's accounts carried out under section 145 of the Act and in carrying out my examination I have followed all applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner's statement

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

  1. accounting records were not kept in respect of the Trust as required by section 130 of the Act; or

  2. the accounts do not accord with those records; or 3. the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination.

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

Matthew Dobbins FCA Dunkley's Woodlands Grange Woodlands Lane Bradley Stoke Bristol BS32 47Y

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The International Alliance of ALS/MND Associations

Statement of Financial Activities (incorporating an Income and Expenditure Account) For the Year Ended 30 June 2025

Unrestricted Restricte Total Total
Funds dFunds Funds Funds
Notes £ £ 2024.25 2023.24
Income and Expenditure
Income
Donations and legacies:
Donations and gifts 29,343 - 29,343 29,170
Grants and Sponsorships 1 119,371 - 119,371 90,038
Subscriptions 2 141,625 - 141,625 115,769
Investment Income:
Interest Receivable 7,758 - 7,758 3,585
Charitable activities:
Conference income 401,725 - 401,725 356,463
Total income 699,821 - 699,821 595,025
Expenditure
Charitable activities:
Awareness raising and publicity 5 737,463 - 737,463 693,541
Total expenditure 5&6 737,463 - 737,463 693,541
Net (expenditure)/income & net
movement infunds (37,641) “ (37,641) (98,516)
Reconciliation offunds
Fund balance broughtforward at
1 July 112,978 ~ 112,978 211,494
Fund balance carried forward at
30June 9&10 75,337 - 75,337 112,978

The statement of financial activities includes all gains and losses recognised in the year. Allincoming resources and resources expended derive from continuing activities. The notes on pages 10 to 19 form part of these financial statements.

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The International Alliance of ALS/MND Associations Balance Sheet

As at 30 June 2025

2024.25 2023.24
Notes . £ £
CurrentAssets
Debtors&Prepayments 7 62,316 58,625
Cash at Bank 251,077 210,165
313,393 268,790
Creditors:
Amounts falling duewithin one year 8 238,057 155,812
Net Current Assets 75,337 112,978
Accumulated Funds —
Restricted Funds - -
Unrestricted Funds: - -
General Fund 75,337 112,978
9 75,337 112,978

The opinion of the Directors is that the company is entitled to the exemptions conferred by Section 477 of the Companies Act 2006 in respect of the year ended 30 June 2025.

Directors’ responsibilities:

i) the Directors have not required the company to obtain an audit of its accounts for the year in accordance with section 476;

ii) the Directors acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and the preparation of the accounts.

The accounts have been prepared in accordance with the special provisions applicable to companies’ subject to the small companies’ regime. ;

Thewere financialsigned onstatementstheir behalfon by:pages 9 to 19 were approved by the Board of Directors, on fi[zors and

Honorary Treasurer Date: November 13, 2025

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The International Alliance of ALS/MND Associations _ Statement of Cashflow

Statement of Cashflow
2024.25 2023.24
£ £
Cashflows from operating activities:
Net cash provided by(used in) operating activities 33,155 (7,162)
Cash flows from investing activities:
Dividends, interest and rents from investments 7,758 3,585
Net cash provided by(used in) investing activities 7,758 (3,585)
Cashflows from financing activities:
Net cash provided by(used in) financing activities - :
Change in cash and cash equivalents in the reporting period 40,912 (3,577)
Cash and cash equivalents atthe beginning ofthe reporting period 210,165 213,742
Cash and cash equivalents attheend of the reporting period 251,077 210,165
2024.25 2023.24
£ £
Reconciliation of net income/(expenditure) to netcash flowfrom
operating activities:
Net income/(expenditure) forthe reporting period (as per
the statement offinancial activities) (37,641) (98,516)
Adjustments for:
Dividends, interest and rents from investments (7,758) (3,585)
(Increase)/decrease in debtors (3,691) (42,501)
Increase/(decrease) in creditors 82,245 137,440
Net cash provided by (used in) operating activities 33,155 (7,162)
Analysis ofchanges in net funds At 01/07/24 Cash flow At 30/06/2025
Net cash
Cash at bank and in hand
;		 210,165 40,912 251,077

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The International Alliance of ALS/MND Associations Statement of Accounting Policies

Principal accounting policies

The financial statements have been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their Accounts in accordance with Financial Reporting Standard 102 (effective January 2019), the Companies Act 2006 and the Charities Act 2011.

Basis of accounting

The financial statements are prepared in accordance with the historical cost convention.

Recognition of income and expenditure

Income from all sources is credited to the Statement of Financial Activities when receivable. Expenditure is accounted for on an accruals basis, inclusive of any VAT which cannot be recovered.

Income for membership subscriptions is recognised in the Statement of Financial Activities in the financial period to which it relates. Any such income relating to a future financial period is not recognised in the Statement of Financial Activities but is treated as deferred income and included asa liability in the Balance Sheet.

Unrestricted funds are donations and other incoming resources received or generated for expenditure on the general objectives of the charity.

Income receivable to which a specific purpose has been defined by the donor is included in restricted funds. Expenditure which meets the defined purpose of the donation is matched to the income and charged to that restricted fund.

Restrictedfunds

There are no restricted funds at this time.

Donations and legacies

Donations are recognised when the charity has evidence of entitlement to the gift, receipt is probable, and its amount can be measured reliably. Entitlement usually arises immediately upon receipt, however, in the event that a donation is subject to conditions that require a level of performance before the charity is entitled to the funds, the income is deferred and not recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly within the contro! of the charity and it is probable that those conditions will be fulfilled in the reporting period.

Investment income

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the bank.

Income from charitable activities

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Income from charitable activities is recognised as earned (as the related goods or services are provided).

Charitable activities

Expenditure on charitable activities includes all costs incurred by the charity in undertaking activities that further its charitable aims for the benefit of its beneficiaries, including those support costs and costs relating to the governance of the charity apportioned to charitable activities. The cost of charitable activities presented in the Statement of Financial Activities includes the costs of direct service provision.

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The International Alliance of ALS/MND Associations Statement of Accounting Policies (continued)

Allocation of costs incurred in respect of more than one activity Support costs are allocated to activities on the basis of time spent by people involved in the activities. Support costs are the costs of general management, accounting and budgeting, payroll administration, information and communications technology, human resources and facilities provision. Allocations are made across the charitable activity of awareness raising and publicity and also to costs of governance.

It is the nature of the Alliance's activities that certain costs are incurred in respect of more than one activity. Where these costs, primarily staff, travel and associated expenses and premises costs cannot be directly attributed to a single activity, they are allocated on a time spent basis across the activities of awareness raising and publicity, and governance.

Governance costs relate to the costs of running the Alliance, such as the costs of statutory compliance, meetings and the employment and establishment costs of the staff involved.

Taxation

As a registered charity, the Alliance benefits from being exempt from corporation tax on its charitable income, as all income is applied for charitable purposes.

Support costs . Support costs are incurred supporting the charity's activities and include expenditure associated with administrative and finance functions, business support, HR, IT and governance. These support functions are shared across the charity's activities and are apportioned across those activities in order to arrive at the full cost for each reported activity. The method of apportionment adopted by the charity is outlined in the notes to the financial statements.

Governance costs

Governance costs (which are included as a component of support costs in accordance with SORP) comprise all costs involving the public accountability of the charity and its compliance with regulation and good practice. These costs include those related to constitutional and statutory requirements, external scrutiny (audit or independent examination), strategic management, and other legal and professional fees.

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Financial instruments

The charity only has financial assets and financial liabilities ofa kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured atthe carrying value plus accrued interest less repayments. The financing charge to expenditure is at a constant rate calculated using the effective interest method.

Judgements

In preparing the financial statements, the Trustees have made judgements regarding the allocation of support costs to the individually reported activities of the charity. Details of the apportionment basis are included in the notes to the financial statements.

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The International Alliance of ALS/MND Associations

1 Grants and sponsorships receivable There were Grants and Sponsorships worth £119,371 receivable during the year (2023/24: £90,038).

2 Income from subscriptions .

2024.25 2023.24
£ £
United Kingdom 39,244 26,558
Europe 28,133 27,755
Africa 100 100
Asia 2,559 800
North America 57,925 48,094
South America 948 1,168
Australasia 12,716 11,294
141,625 115,769
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Charitable activities
Expenditure on charitable activities includes:
2024.25 2023.24
£ £
Independent Examiner's
remuneration 1,000 850

4 Directors’ remuneration and expenses

No remuneration was paid or payable to any Director or to any person(s) known to be connected to a Director.

Director expenses amounting to £4,606 were paid to five directors. This amount consists of reimbursements for registration fees for the Alliance’s internal conference, in line with the Alliance’s policy. (2023.24 £0)

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The International Alliance of ALS/MND Associations

5 Total expenditure

Community Expenditure

Unrestricted Restricted
Funds Funds 2024.25 2023.24
£ £ £ £
Membership 27,720 - 27,720 25,621
PALS & CALS 18,823 - 18,823 13,671
SAC - - - -
Other 25,637 - 25,637 40,884
72,180 - 72,180 80,176

Capability Expenditure

Unrestricted Restricted
Funds Funds 2024.25 2023.24
£ £ £ £
Advocacy 23,876 - 23,876 19,461
Annual Meeting 332,325 - 332,325 279,179
Education &Awareness 83,805 - 83,805 111,437
Other 132,594 - 132,594 14,919
572,601 - 572,601 424,997

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The International Alliance of ALS/MND Associations

Capacity Expenditure

Unrestricted Restricted
Funds Funds 2024.25 2023.24
£ £ £ £
Administration 55,383 - . §5,383 64,895
Governance 37,182 - 37,182 113,998
Other 117 - 117 9,475
92,682 - 92,682 188,368
TotalExpenditure 737,463 -___737.463 693,541

Governance costs include costs of the AGM, directors travel and subsistence, board meetings and administrative support.

6 Employee and trustee information

The average number of persons (FTE) employed by the charity during the year was 0.5. (2023.24 : 1.25) Employment costs for the year were:

Unresiricted Restricted
Funds Funds 2024.25 2023.24
£ £ £ £
Grosswages wagesand salaries 33,709 - 33,709 63,676
Social security costs
Health insurance 14,521 - 14,521 33,418
48,230 - 48,230 97,094

Key Management Personnel — The key management personnel comprise the Trustees and the Executive Director. Total employee benefits of the key management personnel for the charity was £48,230 (2023.24 = £97,094)

The number of officers who received emoluments over £60,000 was 0.5 in the range between £60,000 and £70,000. (2024 — 1)

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The International Alliance of ALS/MND Associations

7 Debtors & prepayments

7 Debtors & prepayments
2024.25 2023.24
£ £
Prepayments 49,022 58,626
Debtors 13,294 -
Accrued Bank interest - -
62,316 58,625
8 Creditors: Amounts falling due within one year
2024.25 2023.24
£ £
Accruals 59,840 9,619
Deferred income 178,217 146,193
238,057 155,812

9 Movements of funds

Restricted
General Funds
Fund (Note 10) 2024.25 2023.24
£ £ £ £
As at 1 July 2024 112,978 - 112,978 211,494
Net (expenditure) / income (37,641) - (37,641) (98,516)
As at30June2025 75,337 - 75,337 112,978

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The International Alliance of ALS/MND Associations

10 Analysis of net assets - movement in funds

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2023.24 2024.25
Bfwd Restricted Unrestricted Total
£ £ £ £
CurrentAssets 268,790 - 44,603 313,393
Net Current Liabilities (155,812) - (82,245) (238,057)
Total NetAssets 112,978 - (37,642) 75,337
Bfwd funds 1% July 2024 - 112,978 112,978
Cfwdfunds30June2025 75,337 75,337

11. Related parties

Expenses were paid out of the funds of the charity to the CEO totalling £55,811. This amount consists of both operational expenses that were paid for on behalf of the Alliance, and reimbursement of travel and accommodation expenses incurred in the course of their duties. (2023.24 £0)

Director expenses amounting to £4,606 were paid to five direciors. This amount consists of reimbursements for registration fees for the Alliance’s internal conference, in line with the Alliance's policy. (2023.24 £0)

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The International Alliance of ALS/MND Associations Statement of Financial Activities (incorporating an Income and Expenditure Account) For the Prior Year Ended 30 June 2024

Unrestricted Restricted Total Total
Funds Funds Funds Funds
Notes £ £ 2023.24 2022.23
Incomeand Expenditure
income
Donations and legacies: .
Donations and gifts 29,170 - 29,170 90,634
Grantsand Sponsorships 1 90,038 - 90,038 129,153
Subscriptions 2 115,769 - 115,769 112,704
Investment income:
Interest Receivable 3,585 - 3,585 -
Charitable activities:
Conferenceincome 356,463 - 356,463 301,380
Total income 595,025 - 595,025 633,871
Expenditure
Charitable activities:
Awareness raising and publicity 5 693,541 - 693,541 585,958
Total expenditure 5&6 693,541 - 693,541 585,958
Net income /(expenditure) & net
movement infunds (98,516) - (98,516) 47,913
Reconciliation offunds
Fund balance brought forward at
1 July 211,494 - 211,494 163,581
Fund balance carried forward at
30June 9 112,978 - 112,978 211,494

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