DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
**Charity number: 1182873**
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **UNAUDITED**
**TRUSTEES' REPORT AND FINANCIAL STATEMENTS**
**FOR THE YEAR ENDED 31 DECEMBER 2022**
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **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 - 21|
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **REFERENCE AND ADMINISTRATIVE DETAILS OF THE CIO, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 DECEMBER 2022**
|**Trustees**|Tony Holland, Chair|
|---|---|
||Gaby Erazo|
||Svetlana Labun|
||Karin Clarke|
||Scott Arant|
||Tunde Liplin|
||Lantz Yap|
||Nathalie Kayadjanian|
||François Besnier|
||Kate Woodcock|
||Craig Moore|
||Lynn Garrick|
|**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**
Marguerite Hughes||
Page 1
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT FOR THE YEAR ENDED 31 DECEMBER 2022**
The Trustees present their annual report together with the financial statements of the CIO for the year 1 January 2022 to 31 December 2022. 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 AND ACTIVITIES**
## **a. Policies 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.
The objectives of the CIO are, for the public benefit:
1) to promote the relief and treatment of people with Prader Willi syndrome, and to provide support and advice for such persons, their families and carers;
2) the advancement of health by promoting, supporting and carrying out charitable research, and to disseminate the results of such research, for the public benefit into the cause and treatment of Prader Willi syndrome; and
3) to raise awareness about the needs of people with Prader Willi syndrome through the provision of information.
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 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**
During the year IPWSO held the 11th International Prader-Willi Syndrome Conference in Ireland and facilitated attendance of professionals and parents from across the globe. IPWSO also supported in-person and online workshops and meetings in Hungary, Mexico and Pakistan. IPWSO established a Mental Health Network and members met online and in-person, and with the support of many care providers in different countries IPWSO undertook a study of services that support adults with PWS. IPWSO collates relevant scientific journal reports and shares this information globally. Written advice (available in multiple languages) is made available to families of people with PWS. IPWSO sought to raise awareness and increase knowledge of PWS by producing short films about the syndrome and made these accessible and freely available via its online resource library. IPWSO continued to educate countries internationally about the availability of free diagnostic testing.
Page 2
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022**
## **ACHIEVEMENTS AND PERFORMANCE**
## **Main achievements of the CIO**
The Charity’s objectives were achieved through the following means:
## **Providing responsive and effective supports:**
- Supporting referrals for our free diagnostic testing service to those who are unable to access testing in their own countries and raising awareness of the availability of diagnostic testing services in Latin America.
- Providing expert responses to queries through the IPWSO Advice Service which draws on IPWSO’s international network.
- Producing culturally appropriate and useful educational materials in multiple languages and formats, such as films and key documents.
- Providing conference scholarships to enable attendance at the 11th International Prader-Willi Syndrome Conference in Ireland in July 2022.
## **Promoting the development of evidence-based interventions in medical care and social care and social support, while also advocating directly, and facilitating the advocacy of others, for improved and greater availability of treatments, services and supports and heightened awareness of PWS:**
- Fostering research and collaboration.
- Establishing a PWS Mental Health Network which aims to connect mental health professionals who support people with PWS or have a research interest in PWS along with professional and family carers; the objective is to reflect on existing knowledge and research, identify priorities for new research and identify ways to undertake this research.
- Publishing a scientific paper on “The Presentation, course and outcome of COVID-19 in people with PraderWilli syndrome: Unexpected findings from an international survey”.
- Publishing a Key Medical Facts document produced by IPWSO’s Clinical and Scientific Advisory Board.
- Publishing a scientific paper on “Reducing Global Health Inequalities for a Rare Disorder: Evaluating the International Prader-Willi Syndrome Organisation’s ECHO® Program".
- Providing an online resource of academic papers on clinical and scientific aspects of PWS.
- Working to develop a People with PWS Committee that will help inform IPWSO’s work.
## **Growing and strengthening the global PWS community:**
- Facilitating a Summit Meeting on New-born Blood Screening.
- Delivering a 1-day educational meeting in Ireland to an interdisciplinary audience.
- Enabling in-person and online educational programmes in Pakistan, Mexico, and Hungary.
- Delivering and facilitating online educational meetings for professionals in China and Africa.
- Delivering our 11th International Prader-Willi Syndrome Conference in Ireland.
- Delivering Caregivers’ ECHO® designed to bring professional provides and caregivers from across the globe together to discuss best practice.
- Communicating via regular Member Newsletters, social media and the IPWSO website.
Page 3
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022**
## **Fostering collaborative, innovative and representative staff and volunteer teams**
- Facilitating and mentoring internships for students from China, Singapore and Mauritius.
## **Developing and growing diverse income sources**
- Establishing a Fundraising Committee to review our income generating strategies.
- Successful applications for support from healthcare industry partners and philanthropic organisations such as Global Genes and additional support received from Friends of IPWSO (USA).
- Initiating a Matched Funding Campaign.
## **Harnessing the potential of technology**
- Investing in a Customer Relationship Management system.
- Developing our information systems such as our dashboard of web statistics, and metrics on social media activity.
## **Enhancing IPWSO’s reputation**
Actively promoting the rights of people with PWS in accordance with the United Nations Convention on the Rights of Persons with Disabilities and striving to influence social policies by engaging with international organisations whose work aligns with IPWSO, such as Rare Diseases International, EURORDIS, Global Genes, the International Alliance of Patients’ Organisations, the Collaborative Global Network for Rare Diseases (CGN4RD), the European Society of Endocrinology, European Medicines Agency, and the PWS Clinical Trial Consortium.
More information on all of IPWSO's work is available in these financial statements and in the IPWSO 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 2023. IPWSO’s reserves policy is to retain sufficient unrestricted reserves to meet its obligations and to ensure financial stability and the Trustees intend to invest $150,000 in general reserves and $60,000 in conference-specific reserves. At the year-end, reserves (representing unrestricted funds excluding any designated funds and funds tied up in fixed assets) amounted to $368,878. The Trustees will look for opportunities to utilise excess reserves during 2023.
## **c. Results for the year**
Income received during the year totalled $399,476 (2021: $339,506), of which $347,862 was restricted and $51,614 was unrestricted. Restricted income came in the form of grants and donations from bodies within the healthcare industry, corporations and individuals. Expenditure totalled $324,176 (2021: $222,811), of which $210,301 was spent from restricted funds.
IPWSO received a Google Ads grant during the year and has benefited to the value of $92,900 for the year ending December 2022 in free online advertising. The CIO would not otherwise have paid for this advertising and so there is no requirement to include this in kind donation within the financial statements.
There was a net deficit on restricted funds of $48,759 which has decreased brought forward funds to a total of
Page 4
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022**
$38,336 (2021: $87,095) to be carried forward. A surplus of $124,059 on unrestricted funds, when added to opening funds, will allow a total to be carried forward of $368,878 (2021: $244,819).
## **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 Project Management Committees, 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 officers and the objective of which is to review the charity’s operations and strategy and to increase member 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**
In addition to IPWSO’s core activities, as outlined in its “Main Achievements”, IPWSO’s plans for 2023 and onwards include preparation for The 12th International Prader-Willi Syndrome Organisation Conference which will take place in 2025. IPWSO will also host awareness raising booths at education conferences throughout the world, both in-person and online, and there will be greater focus on providing support to families and professionals in Africa. IPWSO will co-ordinate a Mental Health ECHO® and will begin to develop a framework to facilitate meaningful engagement by people with PWS in the organisation. IPWSO will produce a film on the syndrome and make this as accessible as possible, subject to resources. IPWSO hopes to benefit from interest accrued on a future investment of $210,000.
## **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:
- select suitable accounting policies and then apply them consistently;
- observe the methods and principles of the Charities SORP (FRS 102);
Page 5
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022**
- make judgments and accounting estimates that are reasonable and prudent;
- state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material
- departures disclosed and explained in the financial statements;
• prepare the financial statements on the going concern basis unless it is inappropriate to presume that the CIO will continue in business.
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**
Date: 04 April 2023
Page 6
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 DECEMBER 2022**
## **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 2022.
## **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 (enter body here), 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: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**INDEPENDENT EXAMINER'S REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2022**
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: 19 April 2023
**M HEWETT FCA DCHA PETERS ELWORTHY & MOORE**
Chartered Accountants
Cambridge
Page 8
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2022**
|**Note**
**INCOME FROM:**
Donations and legacies
2
Charitable activities
3
**TOTAL INCOME**
**EXPENDITURE ON:**
Charitable activities
4
**TOTAL EXPENDITURE**
**NET INCOME/(EXPENDITURE)**
**BEFORE NET LOSSES ON**
**INVESTMENTS**
Net losses on investments
**NET INCOME/(EXPENDITURE)**
Transfers between funds
11
**NET MOVEMENT IN FUNDS**
**RECONCILIATION OF FUNDS:**
Total funds brought forward
Net movement in funds
**TOTAL FUNDS CARRIED FORWARD**|**Restricted**
**funds**
**2022**
**$**
**136,951**
**210,911**
**347,862**
**210,301**
**210,301**
**137,561**
**-**
**137,561**
**(186,320)**
**(48,759)**
**87,095**
**(48,759)**
**38,336**|**Unrestricted**
**funds**
**2022**
**$**
**41,475**
**10,139**
**51,614**
**113,875**
**113,875**
**(62,261)**
**-**
**(62,261)**
**186,320**
**124,059**
**244,819**
**124,059**
**368,878**|**Total**
**funds**
**2022**
**$**
**178,426**
**221,050**
**399,476**
**324,176**
**324,176**
**75,300**
**-**
**75,300**
**-**
**75,300**
**331,914**
**75,300**
**407,214**|As restated
Total
funds
2021
$ 99,088
240,418|
|---|---|---|---|---|
|||||339,506
222,811|
|||||222,811
116,695
(863)|
|||||115,832
-|
|||||115,832
216,082
115,832|
|||||331,914|
The Statement of Financial Activities includes all gains and losses recognised in the year.
The notes on pages 11 to 21 form part of these financial statements.
Page 9
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **BALANCE SHEET AS AT 31 DECEMBER 2022**
|**Note**
**CURRENT ASSETS**
Debtors
8
Cash at bank and in hand
Creditors: amounts falling due within one
year
9
**NET CURRENT ASSETS**
**TOTAL NET ASSETS**
**CHARITY FUNDS**
Restricted funds
11
Unrestricted funds
11
**TOTAL FUNDS**|**654**
**411,626**
**412,280**
**(5,066)**|**2022**
**$**
**407,214**
**407,214**
**38,336**
**368,878**
**407,214**|23,436
382,557
405,993
(74,079)|As restated
2021
$ 331,914|
|---|---|---|---|---|
||||||
|||||331,914|
|||||87,095
244,819|
||||||
|||||331,914|
The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by:
................................................
## **Craig Moore**
## Date: 04 April 2023
The notes on pages 11 to 21 form part of these financial statements.
Page 10
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **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.
## **Prior year currency restatement**
In the prior year the presentational currency was GBP Pounds Sterling as the Charity is administratively UK based. The Trustees consider that the Society operates predominantly in US dollars and therefore have decided to present their accounts in that currency. As a result, the prior year comparative figures have been restated into US dollars.
## **1.2 GOING CONCERN**
The trustees have reviewed the financial position of the charity, including the impact of Covid-19 and have a reasonable expectation that the Charity 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.
Page 11
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **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.
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.
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.
All expenditure is inclusive of irrecoverable VAT.
## **1.6 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.
## **1.7 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 Statement of Financial Activities.
Page 12
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **1. ACCOUNTING POLICIES (CONTINUED)**
## **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: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **2. INCOME FROM DONATIONS**
|Donations
TOTAL 2021 AS RESTATED|**Restricted**
**funds**
**2022**
**Unrestricted**
**funds**
**2022**
**$**
**$**
136,951
41,475
-
99,088|**Total**
**funds**
**2022**
**$**
**178,426**
99,088|As restated
Total
funds
2021
$ 99,088|
|---|---|---|---|
|||||
## **3. INCOME FROM CHARITABLE ACTIVITIES**
|Member subscriptions
Grants
Donations
Conference income
**TOTAL 2022**
TOTAL 2021 AS RESTATED|**Restricted**
**funds**
**2022**
**Unrestricted**
**funds**
**2022**
**$**
**$**
-
10,139
38,926
-
3,565
-
168,420
-
210,911
10,139
229,825
10,593|**Total**
**funds**
**2022**
**$**
**10,139**
**38,926**
**3,565**
**168,420**
**221,050**
240,418|As restated
Total
funds
2021
$ 10,593
224,695
5,130
-|
|---|---|---|---|
||||240,418|
|||||
## **4. ANALYSIS OF EXPENDITURE BY ACTIVITIES**
|Charitable expenditure
TOTAL 2021 AS RESTATED|**Activities**
**undertaken**
**directly**
**2022**
**$**
277,695
199,414|**Support**
**costs**
**2022**
**$**
46,481
23,397|**Total**
**funds**
**2022**
**$**
**324,176**
222,811|As restated
Total
funds
2021
$ 222,811|
|---|---|---|---|---|
||||||
Page 14
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **4. ANALYSIS OF EXPENDITURE BY ACTIVITIES (CONTINUED)**
## **ANALYSIS OF DIRECT COSTS**
|Staff costs
ECHO project
Conferences and events costs
Diagnostic testing
Website costs
Clinical Trial Consortium
Translations|**Total**
**funds**
**2022**
**$**
**110,151**
**2,878**
**142,535**
**2,922**
**906**
**1,000**
**17,303**
**277,695**|As restated
Total
funds
2021
$ 118,747
18,212
44,412
4,839
9,863
981
2,360|
|---|---|---|
|||199,414|
## **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|**Total**
**funds**
**2022**
**$**
**10,514**
**15,141**
**591**
**1,386**
**1,362**
**1,010**
**6,615**
**9,862**
**46,481**|As restated
Total
funds
2021
$ 8,789
6,264
2,152
1,583
1,153
1,133
621
1,702|
|---|---|---|
|||23,397|
## **5. INDEPENDENT EXAMINER'S REMUNERATION**
The independent examiner's remuneration amounts to an independent examiner fee of $1,645 _(_ 2021 _-_ $1,667 _)_ , accountancy services of $2,348 (2021 - $2,380) and bookkeeping fees of $5,414 (2021 - $4,582).
Page 15
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **6. STAFF COSTS AND KEY MANAGEMENT PERSONNEL**
|Wages and salaries
Social security costs
Contribution to defined contribution pension schemes|**2022**
**$**
**106,627**
**1,532**
**1,992**
**110,151**|As restated
2021
$ 114,342
2,317
2,088|
|---|---|---|
||||
|||118,747|
The average number of persons employed by the CIO during the year was as follows:
||**2022**|2021|
|---|---|---|
||**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 contribution) totalling $18,678 (2021: $20,662).
## **7. TRUSTEES' REMUNERATION AND EXPENSES**
During the year, no Trustees received any remuneration or other benefits (2021 - $NIL).
During the year ended 31 December 2022, expenses totalling $2,964 were reimbursed or paid directly to 4 Trustees (2021 - no reimbursment of expenses to trustees).
## **8. DEBTORS**
|Trade debtors
Other debtors|**2022**
**$**
**-**
**654**
**654**|As restated
2021
$ 23,436
-|
|---|---|---|
||||
|||23,436|
Page 16
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **9. 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 2022
Resources deferred during the year
Amounts released from previous periods|**2022**
**$**
**548**
**-**
**525**
**3,993**
**5,066**
**2022**
**$**
**66,329**
**-**
**(66,329)**
**-**|As restated
2021
$ 79
984
409
72,607|
|---|---|---|
||||
|||74,079|
|||As restated
2021
$ -
66,329
-|
||||
|||66,329|
## **10. PRIOR YEAR ADJUSTMENTS**
In the prior year the presentational currency was GBP Pounds Sterling as the Society is administratively UK based. The Trustees consider that the Society operates predominantly in US dollars and therefore have decided to present their accounts in that currency. As a result, the prior year comparative figures have been restated into US dollars. The restatement of the comparative figures is shown below.
|||**Retranslated**|
|---|---|---|
||**Closing**|**at year end**|
||**balance**|**rate**|
||**£**|**$**|
||||
|Current assets|299,940|405,993|
|Current liabilities|(54,568)|(74,079)|
|Funds|245,372|331,914|
Page 17
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **11. STATEMENT OF FUNDS**
## **STATEMENT OF FUNDS - CURRENT YEAR**
|**UNRESTRICTED FUNDS**
General Funds
**RESTRICTED FUNDS**
IPWSO Conference/Meeting
Fund
Diagnostic Testing
Digital Lift Grant
ECHO Funding
Friends: CRM System
Friends: Mandarin Translations
Friends: Pakistan Conference
Friends: Travel Grants
Global Genes
Friends: meetings and
workshops
Raising Awareness
Mental Health Workshop
**TOTAL OF FUNDS**|**Balance at 1**
**January**
**2022**
**$**
**244,819**
**49,483**
**5,693**
**-**
**19,329**
**-**
**-**
**-**
**-**
**-**
**-**
**2,354**
**10,236**
**87,095**
**331,914**|**Income**
**$**
**51,614**
**304,134**
**3,391**
**174**
**-**
**13,668**
**2,959**
**7,380**
**1,927**
**14,229**
**-**
**-**
**-**
**347,862**
**399,476**|**Expenditure**
**$**
**(113,875)**
**(128,534)**
**(3,005)**
**(180)**
**(33,236)**
**(11,415)**
**(2,760)**
**-**
**(6,244)**
**(14,851)**
**-**
**-**
**(10,076)**
**(210,301)**
**(324,176)**|**Transfers**
**in/out**
**$**
**186,320**
**(225,083)**
**-**
**6**
**13,907**
**-**
**(199)**
**-**
**4,317**
**622**
**20,270**
**-**
**(160)**
**(186,320)**
**-**|**Balance at**
**31**
**December**
**2022**
**$**
**368,878**|
|---|---|---|---|---|---|
||||||**-**
**6,079**
**-**
**-**
**2,253**
**-**
**7,380**
**-**
**-**
**20,270**
**2,354**
**-**|
||||||**38,336**|
||||||**407,214**|
Page 18
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **11. STATEMENT OF FUNDS (CONTINUED)**
## **STATEMENT OF FUNDS - PRIOR YEAR**
|**UNRESTRICTED FUNDS**
General Funds
**RESTRICTED FUNDS**
IPWSO Conference/Meeting
Fund
Diagnostic Testing
ECHO Funding
Raising Awareness
Mental Health Workshop
IPWSO at 30
International advocacy support
Education & learning support
**TOTAL OF FUNDS**|Balance at
1 January
2021
$ 195,292
18,627
1,300
-
-
-
-
-
-
19,927
215,219|As restated
Income
$ 110,543
44,234
9,693
105,102
4,225
10,236
47,330
7,457
686
228,963
339,506|As restated
Expenditure
$ (66,304)
(13,379)
(5,301)
(80,483)
(1,871)
-
(47,330)
(7,457)
(686)
(156,507)
(222,811)|Transfers
in/out
$ 5,288
-
-
(5,288)
-
-
-
-
-
(5,288)
-|Balance at
31
December
2021
$ 244,819|
|---|---|---|---|---|---|
||||||49,482
5,692
19,331
2,354
10,236
-
-
-|
||||||87,095|
||||||331,914|
Page 19
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **11. STATEMENT OF FUNDS (CONTINUED)**
Conference/Meeting - this fund represents monies received from Friends of IPWSO USA to support PWS conferences and workshops around the world. Surplus 11th conference funds have been transferred to the general fund, with the balance being transferred to the Friends Meetings and Workshops fund.
Diagnostic Testing - funds from OT4B and individuals to be used for diagnostic testing.
ECHO Funding - funds received in support of various ECHO (Extension of Community Healthcare Outcomes) projects held internationally, to connect health and other providers and interested parties with specialists to facilitate learning and mentorship.
CRM system - funding towards a new customer relationship management system.
Mandarin translations - funding towards translation of IPWSO documents into Mandarin.
Friends Pakistan Conference: funding to support a conference focused on Prader-Willi syndrome to be held in Pakistan in 2023.
Digital Lift grant: funding to help IPWSO advance its technology.
Travel grants - funding towards travel to the 11th conference.
Global Genes: funding towards the implementation of a programme to support and improve outreach strategies and address challenges that affect underserved and underrepresented patient communities.
Raising Awareness - Funds received from Friends of IPWSO USA including improvements to website functionality and preparing leaflets and collateral, including translations.
IPWSO at 30 - Funds received from Novo Nordisk to prepare for the next 30 years supporting people with PWS and their families. Due to the effect of the pandemic on IPWSO's services, which prevented a face-to-face event, Novo Nordisk agreed that the unspent portion of their grant could instead be used as sponsorship towards the 2022 conference.
Mental Health Workshop - Funds received from Friends of IPWSO USA in support of IPWSO's mental health network including an event held in 2022.
International Advocacy Support - Funds were received from Saniona to support IPWSO international advocacy work.
Transfers have been made from unrestricted funds to compensate restricted funds where expenditure exceeds available restricted funds. Surplus 11th conference funds have been transferred to unrestricted funds.
The Jean Phillips-Martinsson Fund is an unrestricted fund which has not specifically been ring-fenced and was established in 2020 to support IPWSO's mission 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 with people with PWS. It is envisaged that this Fund will support a wide range of IPWSO projects and strengthen IPWSO's capacity and long-term sustainability. IPWSO is very grateful to Jean Phillips-Martinsson, its founder and Honorary President, for her generosity in creating this fund in memory of her son, Anders, and husband, Sven
Page 20
DocuSign Envelope ID: CEA40302-F387-4FE6-AF58-0101BEC77002
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **12. ANALYSIS OF NET ASSETS BETWEEN FUNDS**
## **ANALYSIS OF NET ASSETS BETWEEN FUNDS - CURRENT YEAR**
|Current assets
Creditors due within one year
**TOTAL**|**Restricted**
**funds**
**2022**
**Unrestricted**
**funds**
**2022**
**$**
**$**
38,336
373,944
-
(5,066)
38,336
368,878|**Total**
**funds**
**2022**
**$**
**412,280**
**(5,066)**
**407,214**|
|---|---|---|
## **ANALYSIS OF NET ASSETS BETWEEN FUNDS - PRIOR YEAR**
|Current assets
Creditors due within one year
**TOTAL**|As restated
Restricted
funds
2021
$ 87,095
-
87,095|As restated
Unrestricted
funds
2021
$ 318,898
(74,079)
244,819|As restated
Total funds
2021
$ 405,993
(74,079)
331,914|
|---|---|---|---|
## **13. PENSION COMMITMENTS**
The CIO operates a defined contribution 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 group to the fund and amounted to $1,992 (2021 - $2,088). $403 (2021 - $238) were payable to the fund at the balance sheet date and are included in creditors.
## **14. RELATED PARTY TRANSACTIONS**
The International Prader-Willi Syndrome Organisation has not entered into any related party transaction during the year, nor are there any outstanding balances owing between related parties and the International Prader-Willi Syndrome Organisation at 31 December 2022.
Page 21