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2024-12-31-accounts

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

Charity number: 1182873

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

UNAUDITED

TRUSTEES' REPORT AND FINANCIAL STATEMENTS

FOR THE YEAR ENDED 31 DECEMBER 2024

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

CONTENTS

Page
Reference and Administrative Details of the CIO, its Trustees and Advisers 1
Trustees' Report 2 - 6
Independent Examiner's Report 7 - 8
Statement of Financial Activities 9
Balance Sheet 10
Notes to the Financial Statements 11 - 24

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

REFERENCE AND ADMINISTRATIVE DETAILS OF THE CIO, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 DECEMBER 2024

Trustees Tony Holland, President and Chair
François Besnier, Vice President
Scott Arant
Karin Clarke
Gaby Erazo
Lynn Garrick
Nathalie Kayadjanian
Svetlana Labun
Tunde Liplin
Craig Moore
Kate Woodcock
Lantz Yap
Charity (CIO) registered
number
1182873
Principal office
Salisbury House
Station Road
Cambridge
CB1 2LA
Independent Examiner
M Hewett FCA DChA
Peters Elworthy & Moore
Chartered Accountants
Salisbury House
Station Road
Cambridge
CB1 2LA
Bankers
HSBC Bank Plc
63-64 St Andrews Street
Cambridge
CB2 3BZ
CEO
Margaret Walker - appointed January 2025
Marguerite Hughes - resigned February 2025

Page 1

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

TRUSTEES' REPORT FOR THE YEAR ENDED 31 DECEMBER 2024

The Trustees present their annual report together with the financial statements of the CIO for the year 1 January 2024 to 31 December 2024. The Trustees confirm that the annual report and financial statements of the CIO comply with the current statutory requirements, the requirements of the CIO'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) (second edition of the Charities SORP (FRS102) October 2019, effective 1 January 2019).

OBJECTIVES, ACTIVITIES AND MAIN ACHIEVEMENTS

a. Policies, Values and objectives

IPWSO works to improve the quality of life for all people with Prader Willi syndrome (PWS) and their families worldwide. We provide information and support to caregivers, health professionals and families. We encourage national PWS associations to exchange and share their projects and experiences. We fund free testing for diagnosis in countries where it is not available.

Values

  1. Global Solidarity. We are committed to working for a more equal world where all people with PWS can achieve their full potential regardless of their economic, geographic or family circumstances.

  2. Commitment to Science. We believe that people with PWS and their families deserve clinical care, treatment recommendations, services and support that are based on rigorous empirical research and we will promote scientific reasoning throughout our organisation.

  3. Collaboration. Premised on a belief that we can all learn from each other and benefit from each other’s work, we are committed to fostering new relationships, willingly supporting others, and working cooperatively with diverse stakeholders in pursuit of common goals.

  4. Respect for all. We are committed to equality for all people regardless of their sex, sexual orientation or gender reassignment, their race, colour or religion, their disability, marriage status or age.

The objectives of the CIO are, for the public benefit:

  1. Building Communities. To support the growth of new and existing PWS associations and unite the global PWS community for the benefit of all its members.

  2. Equal Opportunities. To strive for a world where people with PWS have equal opportunities to their peers, and all people with PWS, and their families, have access to current, evidence-based knowledge, treatments, services and support.

  3. Research for all. To disseminate research findings in ways that make current knowledge accessible to all and foster research that reflects the diverse needs of people with PWS and their families around the world.

  4. Funding to meet needs. To attract adequate and sustainable IPWSO funding to enable us to better support people with PWS and their families, in particular those most in need.

The Vision of the CIO is:

A world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals.

The Mission of the CIO is:

To unite the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work

Page 2

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

with people with PWS.

In setting objectives and planning for activities, the Trustees have given due consideration to general guidance published by the Charity Commission relating to public benefit, including the guidance 'Public benefit: running a charity (PB2)'.

b. Activities undertaken to achieve objectives

Building Communities:

Equal Opportunities :

Page 3

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

Research for all :

Funding to meet needs :

More information on IPWSO’s work is available in the Annual Report.

FINANCIAL REVIEW

a. Going concern

After making appropriate enquiries, the Trustees have a reasonable expectation that the CIO 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.

b. Reserves policy

As part of its ongoing financial monitoring, IPWSO has established an Investment Committee which in collaboration with IPWSO’s Finance Committee, has recommended to the Trustees an appropriate level of financial reserves for 2024. IPWSO holds reserves to ensure it can continue operating when unexpected events occur, such as a sudden loss of an income stream or an unexpected cost. At 31 December 2024 a total of $266,141 is invested in three money market accounts of which $206,000 is retained for general reserves and $60,141 in conference-specific reserves. At the year-end, reserves (representing unrestricted funds excluding any designated funds) amounted to $294,146. The Trustees will look for opportunities to utilise excess reserves during 2025.

Page 4

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

c. Results for the year

Income received during the year totalled $308,127 (2023: $208,262), of which $189,243 was restricted and $118,884 was unrestricted. Restricted income came in the form of grants and donations from bodies within the healthcare industry, corporations and individuals. Expenditure totalled $272,982 (2023: $202,956), of which $145,225 was spent from restricted funds.

There was a net surplus on restricted funds of $78,577 which has increased brought forward funds to a total of $153,519 (2023: $74,942) to be carried forward. A deficit of $43,432 on unrestricted funds, when deducted from opening funds, results in a total to be carried forward of $294,146 (2023: $337,578).

STRUCTURE, GOVERNANCE AND MANAGEMENT

a. Constitution and governance

International Prader-Willi Syndrome Organisation is a registered charity, number 1182873, and is constituted as a charitable incorporated organisation under a Governing document dated 9 April 2019.

b. Methods of appointment or election of Trustees

The management of the CIO is the responsibility of the Trustees who are elected and coopted under the terms of the Governing document.

c. Organisational structure and decision making policies

The charity's organisational structure was altered in 2022 and consists of a Board of Trustees and also Committees and Advisory Boards, each with its own terms of reference. The Board of Trustees decided to alter the regularity and format of meetings, now alternating monthly between Board Meetings and Consultation Meetings, the latter of which are open to volunteers and advisors and the objective of which is to review the charity’s operations and strategy and to increase engagement and understanding of issues affecting the Charity. At other times all Trustees are kept informed of issues via email and they contribute to making key decisions. The extent to which Trustees’ responsibilities for decisions affecting the development and operation of the charity are devolved day to day to the CEO, is set out in the CEO’s contract of employment and terms of reference.

d. Policies adopted for the induction and training of Trustees

Potential and new Trustees are advised of the Charity's objectives, its activities and the public benefit requirement at the Trustees’ Induction, and support is available to them from fellow Trustees. Other information regarding their duties as Trustees is available from the Charity Commission.

PLANS FOR THE FUTURE

IPWSO’s plans for 2025 and onwards include preparation for the 12[th] International Prader-Willi Syndrome Conference: United in Hope (PWS 2025) to be held from 24-28 June 2025 at the Arizona Grand Resort and Spa in Phoenix, Arizona, USA, in partnership with Prader-Willi Syndrome Association, USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR). IPWSO envisages that this unique collaboration will serve as a catalyst for the largest international PWS conference ever held. Marguerite Hughes, IPWSO’s Chief Executive Officer, will be stepping down from her role for personal reasons with effect from 28 February 2025. She will be very much missed. Margaret Walker has been appointed as our new CEO and will take up the position from 1 January 2025. There will be a period of handover and Marguerite Hughes will continue to support IPWSO as a volunteer to assist with the delivery of PWS 2025. We will also recruit a new Fundraising and Communications Manager in 2025.

Page 5

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

STATEMENT OF TRUSTEES' RESPONSIBILITIES

The Trustees 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).

The law applicable to charities in England & Wales requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the CIO and of its incoming resources and application of resources, including its 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 CIO's transactions and disclose with reasonable accuracy at any time the financial position of the CIO and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the Governing document. They are also responsible for safeguarding the assets of the CIO 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 and signed on their behalf by:

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

Craig Moore Treasurer

Date: 31 March 2025

Page 6

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 DECEMBER 2024

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION ('the CIO')

I report to the charity Trustees on my examination of the accounts of the CIO for the year ended 31 December 2024.

RESPONSIBILITIES AND BASIS OF REPORT

As the Trustees of the CIO you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ('the 2011 Act').

I report in respect of my examination of the CIO's accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

INDEPENDENT EXAMINER'S STATEMENT

Since the CIO's gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that I am qualified to undertake the examination because I am a member of The Institute of Chartered Accountants in England and Wales, which is one of the listed bodies.

Your attention is drawn to the fact that the CIO has prepared the accounts in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) in preference to the Accounting and Reporting by Charities: Statement of Recommended Practice issued on 1 April 2005 which is referred to in the extant regulations but has been withdrawn.

I understand that this has been done in order for the accounts to provide a true and fair view in accordance with the Generally Accepted Accounting Practice effective for reporting periods beginning on or after 1 January 2015.

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

  1. accounting records were not kept in respect of the CIO as required by section 130 of the 2011 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.

Page 7

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

INDEPENDENT EXAMINER'S REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

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.

This report is made solely to the CIO's Trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. My work has been undertaken so that I might state to the CIO's Trustees those matters I am required to state to them in an Independent Examiner's Report and for no other purpose. To the fullest extent permitted by law, I do not accept or assume responsibility to anyone other than the CIO and the CIO's Trustees as a body, for my work or for this report.

Signed:

Dated: 02 April 2025

M HEWETT FCA DCHA PETERS ELWORTHY & MOORE

Chartered Accountants

Cambridge

Page 8

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2024

Note
INCOME FROM:
Donations
2
Charitable activities
3
Investments
4
TOTAL INCOME
EXPENDITURE ON:
Charitable activities
5
TOTAL EXPENDITURE
NET INCOME/(EXPENDITURE)
Transfers between funds
13
NET MOVEMENT IN FUNDS
RECONCILIATION OF FUNDS:
Total funds brought forward
Net movement in funds
TOTAL FUNDS CARRIED FORWARD		 Restricted
funds
2024
$
183,816
5,427
-
189,243
145,225
145,225
44,018
34,559
78,577
74,942
78,577
153,519		 Unrestricted
funds
2024
$
56,928
50,319
11,637
118,884
127,757
127,757
(8,873)
(34,559)
(43,432)
337,578
(43,432)
294,146		 Total
funds
2024
$
240,744
55,746
11,637
308,127
272,982
272,982
35,145
-
35,145
412,520
35,145
447,665		 Total
funds
2023
$ 183,017
20,717
4,528
208,262
202,956
202,956
5,306
-
5,306
407,214
5,306
412,520

The Statement of Financial Activities includes all gains and losses recognised in the year.

The notes on pages 11 to 24 form part of these financial statements.

Page 9

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

BALANCE SHEET AS AT 31 DECEMBER 2024

Note
CURRENT ASSETS
Debtors
10
Investments
11
Cash at bank and in hand
Creditors: amounts falling due within one
year
12
NET CURRENT ASSETS
TOTAL NET ASSETS
CHARITY FUNDS
Restricted funds
13
Unrestricted funds
13
TOTAL FUNDS		 4,000
266,141
191,671
461,812
(14,147)		 2024
$
447,665
447,665
153,519
294,146
447,665		 17,776
207,057
197,986
422,819
(10,299)		 2023
$ 412,520
412,520
74,942
337,578
412,520

The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by:

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

Craig Moore Treasurer

Date: 31 March 2025

The notes on pages 11 to 24 form part of these financial statements.

Page 10

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

1. ACCOUNTING POLICIES

1.1 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 Charities Act 2011.

The financial statements have been prepared to give a 'true and fair' view and have departed from the Charities (Accounts and Reports) Regulations 2008 only to the extent required to provide a 'true and fair' view. This departure has involved following the Charities SORP (FRS 102) published in October 2019 rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 which has since been withdrawn.

International Prader-Willi Syndrome Organisation 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.

No significant estimates or judgements have been made in the course of preparing the financial statements.

1.2 GOING CONCERN

The trustees have reviewed the financial position of the CIO, and have a reasonable expectation that the CIO has adequate resources to continue in operational existence for the foreseeable future. Accordingly, the financial statements continue to be prepared on the going concern basis.

1.3 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 CIO and which have not been designated for other purposes.

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the CIO for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.

Investment income, gains and losses are allocated to the appropriate fund.

Page 11

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

1. ACCOUNTING POLICIES (CONTINUED)

1.4 INCOME

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

On receipt, donated professional services and facilities are recognised on the basis of the value of the gift to the CIO which is the amount it would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt.

Grants are included in the Statement of Financial Activities on a receivable basis. The balance of income received for specific purposes but not expended during the period is shown in the relevant funds on the Balance Sheet. Where income is received in advance of entitlement of receipt, its recognition is deferred and included in creditors as deferred income. Where entitlement occurs before income is received, the income is accrued.

Gifts in kind donated for distribution are included at valuation and recognised as income when they are distributed to the projects. Gifts donated for resale are included as income when they are sold.

Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation. Donations are recognised in the period in which they are received.

Membership fee income, billed on a calendar year basis, is recognised in the period to which it relates.

Conference registration fees are recognised after the conference has taken place. Fees received in advance are deferred.

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.

1.5 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.

Expenditure on charitable activities is incurred on directly undertaking the activities which further the CIO's objectives, as well as any associated support costs. Support costs including governance costs are those costs incurred in support of expenditure on the objects of the Charity. Governance costs are those incurred in connection with administration of the Charity and compliance with constitutional and statutory requirements.

Grants payable are charged in the year when the offer is made except in those cases where the offer is conditional, such grants being recognised as expenditure when the conditions attaching are fulfilled. Grants offered subject to conditions which have not been met at the year end are noted as a commitment, but not accrued as expenditure.

All expenditure is inclusive of irrecoverable VAT.

Page 12

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

1. ACCOUNTING POLICIES (CONTINUED)

1.6 INTEREST RECEIVABLE

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the CIO; this is normally upon notification of the interest paid or payable by the institution with whom the funds are deposited.

1.7 FOREIGN CURRENCIES

Monetary assets and liabilities denominated in foreign currencies are translated into dollars at rates of exchange ruling at the reporting date.

Transactions in foreign currencies are translated into dollars at the rate ruling on the date of the transaction.

Exchange gains and losses are recognised in the Statement of Financial Activities.

1.8 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.

1.9 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.

1.10 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 CIO 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.

1.11 FINANCIAL INSTRUMENTS

The CIO only has financial assets and financial liabilities of a 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 at amortised cost using the effective interest method.

1.12 PENSIONS

The CIO operates a defined contribution pension scheme and the pension charge represents the amounts payable by the CIO to the fund in respect of the year.

Page 13

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

2. INCOME FROM DONATIONS

Donations
Grants
TOTAL 2024
TOTAL 2023		 Restricted
funds
2024
Unrestricted
funds
2024
$
$
44,479
56,928
139,337
-
183,816
56,928
140,029
42,988		 Total
funds
2024
$
101,407
139,337
240,744
183,017		 Total
funds
2023
$ 96,369
86,648
183,017

Included in donations is a $6,405 gift in kind relating to legal advice.

3. INCOME FROM CHARITABLE ACTIVITIES

Member subscriptions
Diagnostic testing
PWSA USA Association (ECHO project)
Conference registration fees
TOTAL 2024
TOTAL 2023		 Restricted
funds
2024
Unrestricted
funds
2024
$
$
-
9,728
5,427
-
-
-
-
40,591
5,427
50,319
5,465
15,252		 Total
funds
2024
$
9,728
5,427
-
40,591
55,746
20,717		 Total
funds
2023
$ 10,252
5,465
5,000
-
20,717

Page 14

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

4. INVESTMENT INCOME

Unrestricted
funds
2024
$
Money market interest
11,637
TOTAL 2023
4,528		 Total
funds
2024
$
11,637
4,528		 Total
funds
2023
$ 4,528

5. ANALYSIS OF EXPENDITURE BY ACTIVITIES

Charitable expenditure
TOTAL 2023		 Activities
undertaken
directly
2024
$
221,087
173,973		 Grant
funding of
activities
2024
$
6,730
7,899		 Support
costs
2024
$
45,165
21,084		 Total
funds
2024
$
272,982
202,956		 Total
funds
2023
$ 202,956

ANALYSIS OF DIRECT COSTS

Staff costs
Conferences and events costs
Diagnostic testing
Website costs
Translations		 Total
funds
2024
$
113,635
99,522
4,729
3,201
-
221,087		 Total
funds
2023
$ 119,130
44,174
7,261
2,332
1,076
173,973

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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

5. ANALYSIS OF EXPENDITURE BY ACTIVITIES (CONTINUED)

ANALYSIS OF SUPPORT COSTS

Accountancy and bookkeeping fees
Foreign currency exchange
Advertising and marketing
Insurance
IT software and consumables
Bank charges
Miscellaneous expenses
Office running costs
Professional and consultancy fees		 Total
funds
2024
$
10,676
12,028
284
3,709
2,420
1,076
1,340
5,982
7,650
45,165		 Total
funds
2023
$ 10,462
(7,821)
200
1,512
1,866
968
1,163
4,949
7,785
21,084

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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

6. ANALYSIS OF GRANTS

Microgrants
TOTAL 2023		 Grants to
Institutions
2024
$
5,147
6,437		 Grants to
Individuals
2024
$
1,583
1,462		 Total
funds
2024
$
6,730
7,899		 Total
funds
2023
$ 7,899

The CIO has made the following material grants to institutions during the year:

NAME OF INSTITUTION
The SPINE Foundation
Magyar Prader-Willi Szindróma Egyesulet
Aster CMI Hospital
PWS Thailand Association
Taylor's University Malaysia
University Kebangsaan Malaysia
Associação Brasileira da Síndrome de Prader-Willi
Associação SPW Portugal
ASOPRAWI (PWS Costa Rica)
Aster CMI Hospital
7.
INDEPENDENT EXAMINER'S REMUNERATION
Fees payable to the CIO's independent examiner for the independent
examination of the CIO's annual accounts
Fees payable to the CIO's independent examiner in respect of:
Preparation of statutory financial statements
Bookkeeping services		 2024
$
-
-
-
-
-
1,000
1,162
1,200
1,085
700
5,147
2024
$
1,969
2,809
4,599		 2023
$ 450
1,493
1,500
1,500
1,494
-
-
-
-
-
6,437
2023
$ 1,908
2,723
4,483

Page 17

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

8. STAFF COSTS AND KEY MANAGEMENT PERSONNEL

Wages and salaries
Social security costs
Contribution to defined contribution pension schemes		 2024
$
106,690
3,502
3,443
113,635		 2023
$ 113,233
3,746
2,151
119,130

The average number of persons employed by the CIO during the year was as follows:

2024 2023
No. No.
Staff 4 4

No employee received remuneration amounting to more than $60,000 in either year.

The charity considers its key management personnel to be the Trustees and the CEO, Marguerite Hughes. During the year, the CEO received remuneration (comprising gross salary, employer's national insurance and employer's pension contributions) totalling $20,281 (2023: $19,860).

9. TRUSTEES' REMUNERATION AND EXPENSES

During the year, no Trustees received any remuneration or other benefits (2023 - $NIL).

During the year ended 31 December 2024, expenses totalling $7,556 were reimbursed or paid directly to 6 Trustees (2023 - $5,072 to 3 Trustees). These expenses related to travel, accommodation and subsistence.

10. DEBTORS

2024 2023
$ $
Trade debtors 4,000 17,776

Page 18

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

11. CURRENT ASSET INVESTMENTS

2024 2023
$ $
Money market investments (maturing between 6 months and 1 year) 266,141 207,057

12. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR

Trade creditors
Other taxation and social security
Other creditors
Accruals and deferred income
Deferred income at 1 January 2024
Resources deferred during the year
Amounts released from previous periods		 2024
$
2,052
1,826
640
9,629
14,147
2024
$
163
-
(163)
-		 2023
$ 4,757
296
453
4,793
10,299
2023
$ -
163
-
163

Deferred income represents 2024 membership fees received in advance.

Page 19

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

13. STATEMENT OF FUNDS

STATEMENT OF FUNDS - CURRENT YEAR

UNRESTRICTED FUNDS
General Funds
RESTRICTED FUNDS
Attendance at educational
conferences
Diagnostic testing
6th International Caregivers
Conference - Berlin
Friends: translations
Friends: meetings and
workshops
Friends: travel scholarship PCC
(Berlin)
Friends 3 year grant
Friends: microgrants
Friends: filming PPC 2024
conference
Friends: travel and strategic
fellowships for 12th
International Conference
Translation and interpretation
IPWSO Caregivers' Forum
12th International Conference -
other funding
TOTAL OF FUNDS		 Balance at 1
January
2024
$
337,578
17,500
829
12,001
1,098
23,064
4,600
-
11,050
4,800
-
-
-
-
74,942
412,520		 Income
$
118,884
42,837
5,427
19,647
-
-
-
100,000
-
-
11,500
5,000
4,000
832
189,243
308,127		 Expenditure
$
(127,757)
(30,683)
(5,330)
(65,948)
(4)
(16,300)
(3,561)
(9,377)
(7,597)
-
(4,410)
15
(2,000)
(30)
(145,225)
(272,982)		 Transfers
in/out
$
(34,559)
10,000
-
34,300
-
(6,764)
(1,039)
-
(1,049)
(4,800)
3,911
-
-
-
34,559
-		 Balance at
31
December
2024
$
294,146
39,654
926
-
1,094
-
-
90,623
2,404
-
11,001
5,015
2,000
802
153,519
447,665

Page 20

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

13. STATEMENT OF FUNDS (CONTINUED)

STATEMENT OF FUNDS - PRIOR YEAR

UNRESTRICTED FUNDS
General Funds
RESTRICTED FUNDS
Advice line
Attendance at educational
conferences
Diagnostic testing
6th International Caregivers
Conference - Berlin
Consultancy funding
ECHO funding
European Congress of
Endocrinology 2023
Friends: CRM System
Friends: translations
Friends: Pakistan conference
Friends: meetings and
workshops
Friends: travel scholarship PCC
(Berlin)
Friends: microgrants
Friends: filming PPC 2024
conference
Raising Awareness
TOTAL OF FUNDS		 Balance at
1 January
2023
$ 368,878
-
-
6,079
-
-
-
-
2,253
-
7,380
20,270
-
-
-
2,354
38,336
407,214		 Income
$ 62,768
1,347
40,760
5,465
17,500
6,035
11,000
435
-
2,000
-
40,752
-
20,200
-
-
145,494
208,262		 Expenditure
$ (116,277)
(1,327)
(15,830)
(10,915)
(502)
(6,049)
(11,065)
(435)
-
(915)
-
(28,628)
-
(11,013)
-
-
(86,679)
(202,956)		 Transfers
in/out
$ 22,209
(20)
(7,430)
200
(4,997)
14
65
-
(2,253)
13
(7,380)
(9,330)
4,600
1,863
4,800
(2,354)
(22,209)
-		 Balance at
31
December
2023
$ 337,578
-
17,500
829
12,001
-
-
-
-
1,098
-
23,064
4,600
11,050
4,800
-
74,942
412,520

Page 21

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

13. STATEMENT OF FUNDS (CONTINUED)

IPWSO Advice Line – this fund represents monies raised from fundraising campaigns to support IPWSO’s work to ensure that everyone across the world has equal access, through our advice line, to expert assistance, knowledge and support about the care and treatment of people with PWS.

Attendance at Educational Conferences – Educational Outreach - this fund represents monies received from the healthcare industry to support IPWSO’s presence at PWS related international conferences. Support is provided for project management costs, educational material costs, exhibition costs, postage and travel costs.

Diagnostic Testing – this fund represents monies raised from OT4B and from fundraising campaigns and is used to support diagnostic testing for PWS.

6th International PWS Caregivers’ Conference in Berlin (PPC 2024) – this fund represents sponsorship donations associated with the conference, and also includes funds provided by Friends of IPWSO (USA) to support project management, administrative costs, delegate registration fee and travel costs for those for whom costs would be prohibitive.

Consultancy – this fund represents monies received from a private, anonymous donor for the purpose of obtaining professional advice on fundraising.

Mental Health ECHO® – this fund represents monies received from Friends of IPWSO (USA) and from the healthcare industry to support the provision of online educational workshops specifically in relation to PWS and mental health and behaviour, and also to support the purchase of computer hardware.

European Congress of Endocrinology 2023 – this funds represents monies received from the ESE Patient Advocacy Group to attend the European Congress of Endocrinology in Turkey in May 2023.

CRM System – this fund represents monies received from Friends of IPWSO (USA) to support a new customer relationship management system.

Friends translations – this fund represents monies received from Friends of IPWSO (USA) to translate educational materials into various languages and to provide interpreters at international meetings.

Friends pakistan conference – this is a grant to support a conference focused on Prader-Willi Syndrome to be held in Pakistan.

Friends meetings and workshops – funding from Friends of IPWSO (USA) to fund costs associated with the 3rd PWS International Symposium in Columbia.

Friends 2024 3-year Grant Scheme – this fund represents funds provided by Friends of IPWSO (USA) for projects to be decided upon by the IPWSO Grants Committee to include conferences, workshops, meetings, small projects and travel fellowships for the three year period commencing 2024; $5,000 each year is to be used for project management costs.

Microgrants – this fund represents monies received from Friends of IPWSO (USA) to support smaller projects, initiated by groups, PWS associations and interested parties that will be of benefit to people living with and affected by PWS.

Friends: travel scholarship PCC – this fund represents monies for travel scholarships for delegate attendance at the 15th Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE 2024) in Algiers, Algeria.

Friends: filming PPC 2024 conference – this fund represents monies carried forward from 2023 ($4,800)

Page 22

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

13. STATEMENT OF FUNDS (CONTINUED)

for the production of educational resources arising from the conference in Berlin.

Friends Strategic Grants – this grant represents monies to support travel fellowships for attendance at the United in Hope: PWS 2025 International Conference in Arizona, USA in 2025.

Translation and Interpretation Fund – this fund represents funds received from Acadia Pharmaceuticals in 2024 for the purposes of translating updates to our Clinical and Scientific Consensus documents in 2025.

Funds to support the IPWSO Caregivers’ Forum – this fund represents monies to support the organisation of a Caregivers Forum, a new initiative launched in 2024.

Other funding for travel for 12th International Conference (USA) – this fund represents monies to support travel to PWS 2025 from other sources.

Raising Awareness – funds received from Friends of IPWSO USA including improvements to website functionality and preparing leaflets and collateral, including translations.

Transfers between funds have been made to compensate restricted funds where expenditure exceeds available restricted funds and where, at the agreement of the funder, restricted funds have been reassigned to another purpose or added to unrestricted funds.

14. ANALYSIS OF NET ASSETS BETWEEN FUNDS

ANALYSIS OF NET ASSETS BETWEEN FUNDS - CURRENT PERIOD

Current assets
Creditors due within one year
TOTAL		 Restricted
funds
2024
Unrestricted
funds
2024
$
$
159,277
302,535
(5,758)
(8,389)
153,519
294,146		 Total
funds
2024
$
461,812
(14,147)
447,665

ANALYSIS OF NET ASSETS BETWEEN FUNDS - PRIOR PERIOD

Current assets
Creditors due within one year
TOTAL		 Restricted
funds
2023
$ 74,942
-
74,942		 Unrestricted
funds
2023
$ 347,877
(10,299)
337,578		 Total
funds
2023
$ 422,819
(10,299)
412,520

Page 23

Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

15. PENSION COMMITMENTS

The CIO operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the CIO in an independently administered fund. The pension cost charge represents contributions payable by the CIO to the fund and amounted to $3,443 (2023 - $2,151). $640 (2023 - $453) were payable to the fund at the balance sheet date and are included in creditors.

16. VOLUNTEERS

The hours committed by volunteers far outstrip the number of hours worked by paid staff members and IPWSO remains hugely grateful for their time, expertise and support. Volunteers spent 7,199 hours compared with 4,900 hours by staff.

17. RELATED PARTY TRANSACTIONS

During the year, donations totaling $654 were received from 3 trustees and $21,710 from our Honorary President, Jean Phillips Martinsson. There are no conditions attached to these donations.

Page 24