Charity number: 1182873
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
UNAUDITED
TRUSTEES' REPORT AND FINANCIAL STATEMENTS
FOR THE YEAR ENDED 31 DECEMBER 2021
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 - 23 |
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
REFERENCE AND ADMINISTRATIVE DETAILS OF THE CIO, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 DECEMBER 2021
| Trustees | Tony Holland, President |
|---|---|
| James O'Brien, Vice President | |
| Marcello Giannubilo Schutzer, Treasurer | |
| Lynn Garrick, Secretary | |
| Amalia Balart | |
| François Besnier | |
| Verena Gutmann | |
| Maria Libura | |
| Craig Moore | |
| Kate Woodcock | |
| Marilyn Dumont-Driscoll | |
| 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
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
TRUSTEES' REPORT FOR THE YEAR ENDED 31 DECEMBER 2021
The Trustees present their annual report together with the financial statements of the CIO for the year 1 January 2021 to 31 December 2021. 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
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, 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)'.
Activities undertaken to achieve objectives
During the year IPWSO undertook and/or supported online workshops and conferences and provided support to facilitate attendance at such events. IPWSO collates relevant scientific journal reports and shares this information globally. Written advice (available in multiple languages) is made available to families of people living with PWS. Via the ECHO projects (see below) IPWSO sought to raise awareness and increase knowledge of PWS across the globe and educated countries internationally about diagnostic testing.
Page 2
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2021
Achievements and performance
Main achievements of the CIO
The Charity’s objectives were achieved through the following means:
- Responsive and effective supports :
Providing free diagnostic testing to those who could not access it in their own countries as well as guidance and support to laboratories aiming to offer PWS testing; IPWSO provided support to the PWS Association in Brazil to enable them to publicise in Brazil and other Latin American countries, the availability of a free PWS diagnostic testing programme
Producing culturally appropriate and useful educational materials in multiple languages and formats for people with PWS, their families and the professionals who work with them
By means of Project ECHO®, IPWSO raised awareness and increased knowledge of PWS across the globe. Four online educational programmes for specific PWS communities ran throughout 2021:
-
1) IPWSO Leadership ECHO
-
2) IPWSO Health ECHO
-
3) IPWSO SPW Latino América ECHO 4) IPWSO Professional Providers’ and Caregivers’ ECHO
Providing expert responses to queries through the IPWSO Advice Services which draws on IPWSO’s international network
Providing grants to Associations to enable them to host PWS conferences and educational workshops.
- 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 between scientists, clinicians, professional caregivers, people with PWS and families by means including focused workshops, overseeing research, providing assistance to researchers, pharmaceutical companies and others engaged in PWS research.
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 and Collaborative Global Network for Rare Diseases (CGN4RD).
Developing a 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.
Page 3
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2021
Main achievements of the CIO (continued)
- Growing and strengthening the global PWS community and working to reduce global inequality in the availability of information, treatments, services and supports for people with PWS and their families:
Communicating via regular Member Newsletters, social media and the website and producing short educational videos on PWS and guidance and Consensus Documents Disseminating information in different languages and making the IPWSO website user-friendly and accessible to audiences around the world.
Collaborating and producing scientific papers and conducting research such as investigating PWS and COVID-19.
Celebrating IPWSO at 30th – an event and recordings designed to facilitate international discussion that will assist IPWSO prepare for the next 30 years.
More information on all of IPWSO's work is available in these financial statements and in the IPWSO Annual Report.
Financial review
Going concern
After making appropriate enquiries, including the impact of Covid 19, 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.
Reserves policy
As part of its ongoing financial monitoring, the Finance and Fundraising Committee (FFC) recommends to the Trustees an appropriate level of financial reserves. IPWSO’s reserves policy is to retain sufficient unrestricted reserves to meet its obligations and to ensure financial stability and the Trustees believe that a target level of $125,000 (approximately £92,500) would be adequate. Currently free reserves are £180,895, which is above the target level, however the CIO is deliberately building up unrestricted cash reserves which will be spent on the 2022 conference.
Results for the year
Income received during the year totalled £246,585 (106,098), of which £79,827 was unrestricted and £166,758 was restricted. Included within unrestricted funds is the market value of shares donated to the CIO by Mrs Jean Phillips Martinsson. Restricted income came in the form of grants and donations from bodies within the healthcare industry, corporations and individuals. Expenditure totalled £161,915 (2020: £69,832), of which £113,658 was spent from restricted funds.
IPWSO received a Google Ads grant in February 2021 and has benefited to the value of $74,600 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 surplus on restricted funds of £49,251 which has increased brought forward funds to allow a total of £64,387 (2020: £15,136) to be carried forward. A surplus of £34,791 on unrestricted funds, when added to opening funds will allow a total to be carried forward of £180,985 (2020: £146,194).
Page 4
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2021
Structure, governance and management
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.
It became apparent in early 2021 that IPWSO’s annual income was likely to exceed £250,000. As a result, the Trustees decided that the accounts would be prepared using the Accruals basis in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102); this is a change from our usual Receipt and Payments Accounts and will be the method used in future financial reporting.
A prior period adjustment has been made in the financial statements in order to restate the opening fund position and the comparative 2020 figures as if the 2020 accounts had also been prepared using the accruals basis.
Methods of appointment or election of Trustees
The management of the CIO is the responsibility of the Trustees who are elected and co opted under the terms of the Governing document.
Organisational structure and decision making policies
The charity's organisational structure consists of a board of Trustees. The Board of Trustees meets monthly through the year to review the charity’s operations and strategy. At other times all Trustees are kept informed of issues affecting the charity and they contribute in 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.
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 and support is available to them from fellow Trustees. Other information regarding their duties as Trustees is available from the Charity Commission.
Plans for future periods
The 11th International Prader Willi Syndrome Organisation Conference, University of Limerick campus, Ireland, 6 – 10 July 2022 has been one of the focal points of IPWSO’s work. This International Conference, a unique and immersive event that brings together the global PWS community with the aim of sharing knowledge and enabling a better understanding of the needs of people with PWS. The Programme Leads and Committees have worked very hard to identify a wide range of topics that will be of interest to IPWSO’s global multidisciplinary audience as well as to people living with PWS, their families, carers and all those providing a holistic approach to supporting the health, education and social care requirements of people living with the syndrome. Expert speakers have been secured who can deliver the most current thinking and facilitate what will no doubt lead to interesting debates and discussions.
Page 5
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2021 Stat•m•nt of Trusts•$' rv$ponsibilities The Tpjstees are responsible for prèparing the Trustees, Rapt 8nd the fin8ndal ststernents in accordance wth applicable law and United KIOM A(tounting Stsndards (United KingdcKn Generally Acc8ptsd Accounting Prartice). The law applicable lo chariues In England 8 Wates rnq(Jtros the TnJsle8s to prepare flnandal statements for each financlal year whith give a Inje and fair view of the st8t8 of affairs of the CIO and of its incoming resources 8nd appliGqlion of re80ttrces, including its Incom8 and expendlture. for thal perfc•J. In preparfng th9s0 finand81 ststements. the Trustses are required to: select suitabl8 accounting p&S And thèn appty them rxJnsiStenUy, obseNe the methods and principl8s of the Charities SORP IFRS 1021.. make judgments and accounting estimates th8t are rèasonab18 and prud8nl,' state whether applicabl8 UK Accounting StÈndards IFRS 1021 have been folh)wed, subjoct lo any materlal dgpartures dls¢losed 8nd explaSned in the financial staternts,' prepars IFie financial stal8m8nts on the wng tCern basis unless rt Is inappTOPriato to prosumg tho1 tho CIO w511 conunue in buslness. Th8 Trustses aro r$8pw$lble for keeplng ad*4uat6 8cthJnUng records that are sufficient to show and gxplaln thg CIO'S transactlons and disc108e wlth reasonable acoJracrf at any time the financial posItn of the CIO and enable them lo ensure that the financLql statements compty %lh the Charitios Act 2011, tha Charity IA¢eounts And Rèportsl Ragulatlons 2008 and thè provIs¥ of tho GovemlTrJ document. They are also responsible for $afaguar¢Ying thè 8SS8t$ of thè CIO and henc£ for taking reasonable steps for th8 pr8¥entn and delecuon of fraud and other Irregvlarities. Approved by order of tho members of Iha board of Tnta&S &gnad on thair ty. Marcello Glannubllo SchutZ•f Page 6
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 DECEMBER 2021
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 2021.
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
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:
-
accounting records were not kept in respect of the CIO as required by section 130 of the 2011 Act; or
-
the accounts do not accord with those records; or
-
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.
Page 7
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
INDEPENDENT EXAMINER'S REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2021
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: 1 March 2022
M Hewett FCA DChA Peters Elworthy & Moore
Chartered Accountants
Cambridge
Page 8
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2021
| Note Income from: Donations 2 Charitable activities 3 Total income Expenditure on: Charitable activities 4 Total expenditure Net income before net losses on investments Net losses on investments Net income Transfers between funds 12 Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward |
Restricted funds 2021 £ - 166,758 166,758 113,658 113,658 53,100 - 53,100 (3,849) 49,251 15,136 64,387 |
Unrestricted funds 2021 £ 72,117 7,710 79,827 48,257 48,257 31,570 (628) 30,942 3,849 34,791 146,194 180,985 |
Total funds 2021 £ 72,117 174,468 246,585 161,915 161,915 84,670 (628) 84,042 - 84,042 161,330 245,372 |
Total funds 2020 £ 68,660 43,336 |
|---|---|---|---|---|
| 111,996 | ||||
| 70,233 | ||||
| 70,233 | ||||
| 41,763 - |
||||
| 41,763 - |
||||
| 41,763 | ||||
| 119,567 | ||||
| 161,330 |
The Statement of Financial Activities includes all gains and losses recognised in the year.
The notes on pages 11 to 23 form part of these financial statements.
Page 9
INTERNATIONAL PRADER-WILU SYNDROME ORGANISATION BALANCE SHEET AS AT 31 OECEAIBER 2021 As reststad 2020 2021 Flxod a8sats Investmgnts 5,452 5A52 Currènt ¥$ts Debtors Cash al bank and In hand 17.314 282.626 448 158.619 159.065 Creditors.. omounts tslllng du& wthin t year 10 {$4.568) 13.1871 Net ¢urrnnt 245,372 155,878 Totsl l•Jv curr•nt IlabllSUe• 245.372 161,330 Total not us•ts 245.372 161,330 Charlty fund¥ Re8lrict8d lunds Unre8tricted lunds 12 12 04,387 180,98S 15,136 146,194 Total funds 245.372 161.330 Th& ffinanclal st8tsments wero 8pprov8d and authorW for issue by Ihe Trustg8s and sHJn8d on thglr bèhalf by. rcello Glannubllo Schutz•r Dat8: The rteS on pages 11 to 23 form part of these finanaal st*Onnts. Pagè fo
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
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.
The accounts were previously presented on a receipts and payments basis and the balance sheet has been restated following the change to the accruals basis.
The financial statements have been presented in pounds sterling which is the currency that the financial records are maintained in, however the functional currency includes £, $ and €.
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
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
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 sterling at rates of exchange ruling at the reporting date.
Transactions in foreign currencies are translated into sterling at the rate ruling on the date of the transaction.
Exchange gains and losses are recognised in the Statement of Financial Activities.
Page 12
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
1. Accounting policies (continued)
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.
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
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
2. Income from donations
| Unrestricted funds 2021 £ Donations 72,117 Total 2020 as restated 68,660 |
Total funds 2021 £ 72,117 68,660 |
As restated Total funds 2020 £ 68,660 |
|---|---|---|
Included in donations is £48,676 (2020: £39,062) received in the form of donated investments from Mrs Jean Phillips-Martinsson. This income is unrestricted and more information is available in the Statement of Funds note.
3. Income from charitable activities
| Member subscriptions Grants Donations Total 2020 as restated |
Restricted funds 2021 Unrestricted funds 2021 £ £ - 7,710 163,025 - 3,733 - 166,758 7,710 36,862 6,474 |
Total funds 2021 £ 7,710 163,025 3,733 174,468 43,336 |
As restated Total funds 2020 £ 6,474 36,862 - |
|---|---|---|---|
| 43,336 | |||
Page 14
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
4. Analysis of expenditure by activities
| Charitable expenditure Total 2020 as restated Analysis of direct costs |
Activities undertaken directly 2021 £ 143,887 61,332 |
Support costs 2021 £ 18,028 8,901 |
Total funds 2021 £ 161,915 70,233 |
As restated Total funds 2020 £ 70,233 |
|---|---|---|---|---|
| Staff costs ECHO project Conferences and events costs Diagnostic testing Website costs Clinical Trial Consortium Translations |
Total funds 2021 £ 86,425 13,255 32,323 3,522 7,178 714 470 143,887 |
Total funds 2020 £ 42,073 806 943 2,130 14,477 815 88 |
|---|---|---|
| 61,332 |
Page 15
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
4. 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 |
Total funds 2021 £ 6,397 5,559 1,566 1,152 839 824 452 1,239 18,028 |
Total funds 2020 £ 5,501 (235) 490 619 291 235 777 1,223 |
|---|---|---|
| 8,901 |
5. Independent examiner's remuneration
The independent examiner's remuneration amounts to an independent examiner fee of £1,236 ( 2020 - £1,200 ) , accountancy services of £1,764 (2020 - £1,020) and bookkeeping fees of £3,397 (2020 - £3,281).
Page 16
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
6. Staff costs and key management personnel
| Wages and salaries Social security costs Contribution to defined contribution pension schemes |
2021 £ 83,219 1,686 1,520 86,425 |
2020 £ 40,598 785 690 |
|---|---|---|
| 42,073 |
The average number of persons employed by the CIO during the year was as follows:
| 2021 | 2020 | |
|---|---|---|
| No. | No. | |
| Staff | 4 | 3 |
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, employers' national insurance and employers' pension contribution) totalling £15,038 (2020: £11,760).
7. Trustees' remuneration and expenses
During the year, no Trustees received any remuneration or other benefits (2020 - £NIL).
During the year ended 31 December 2021, no Trustee expenses have been incurred (2020 - £NIL) and no expenses have been paid directly to a third party on their behalf.
Page 17
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
8. Fixed asset investments
| Prior year adjustment At 1 January 2021 (market value) Additions Disposals at market value (proceeds £53,500, realised loss £628) At 31 December 2021 |
Listed investments £ 5,452 |
|---|---|
| 5,452 48,676 (54,128) |
|
| - |
All the fixed asset investments are held in the UK. All investment additions have been donated to the CIO and are recognised at the market value on the date of the donation. The 2020 accounts were prepared on the receipts and payments basis so the investments held at that date have been introduced into these financial statements via a prior year adjustment (see note 11) using the market value on 31 December 2020.
All investments are carried at their fair value. Holdings in common investment funds, unit trusts and open ended investment companies are at the bid price. The basis of fair value for quoted investments is equivalent to the market value, using the bid price. Asset sales and purchases are recognised at the date of trade at cost (that is their transaction value).
The CIO does not make use of derivatives and similar complex financial instruments and at the year end the CIO was not holding any shares.
9. Debtors
| Due within one year Trade debtors |
2021 £ 17,314 17,314 |
As restated 2020 £ 446 |
|---|---|---|
| 446 |
Page 18
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
10. Creditors: Amounts falling due within one year
| Trade creditors Other taxation and social security Other creditors Accruals and deferred income Resources deferred during the year |
2021 £ 58 727 302 53,481 54,568 2021 £ 49,002 |
As restated 2020 £ 81 485 173 2,448 |
|---|---|---|
| 3,187 | ||
| 2020 £ - |
Deferred income relates to sponsorship income received for the 2022 conference to be held in Ireland. Sponsorship has been received from Resilience Care, Radius Health Inc and Novo Nordisk.
11. Prior year adjustments
A prior year adjustment has been made in order to restate the opening fund position for the CIO because the 2020 accounts were prepared on the receipts and payments basis, however the 2021 accounts are being prepared using the accruals method.
At the end of 2020 there were unrestricted funds carried forward on the receipts and payments accounts of £143,483 and restricted funds of £15,136. After adjusting for investments at market value of £5,452, debtors of £446, and creditors of £3,187, the revised opening balance position at 1 January 2021 was £161,330, of which £15,136 was restricted and £146,194 was unrestricted.
Page 19
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
12. Statement of funds
Statement of funds - current year
Unrestricted funds General Funds Restricted funds IPWSO Conference/ Meeting Fund Diagnostic testing ECHO Funding Raising Awareness IPWSO at 30 Mental Health Workshop International Advocacy Support Education and Learning Support Total of funds |
Balance at 1 January 2021 £ 146,194 14,123 1,013 - - - - - - 15,136 161,330 |
Income £ 79,827 32,194 7,055 76,494 3,075 34,447 7,567 5,427 499 166,758 246,585 |
Expenditure £ (48,257) (9,737) (3,858) (58,356) (1,334) (34,447) - (5,427) (499) (113,658) (161,915) |
Transfers in/out £ 3,849 - - (3,849) - - - - - (3,849) - |
Gains/ (Losses) £ (628) - - - - - - - - - (628) |
Balance at 31 December 2021 £ 180,985 |
|---|---|---|---|---|---|---|
| 36,580 4,210 14,289 1,741 - 7,567 - - |
||||||
| 64,387 | ||||||
| 245,372 |
Page 20
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
12. Statement of funds (continued)
Statement of funds - prior year
| Unrestricted funds General Funds Restricted funds IPWSO Conference/ Meeting Fund Website Fund Diagnostic testing Total of funds |
Balance at 1 January 2020 £ 117,932 1,635 - - 1,635 119,567 |
As restated Income £ 71,991 12,488 24,374 3,143 40,005 111,996 |
As restated Expenditure £ (43,729) - (24,374) (2,130) (26,504) (70,233) |
Balance at 31 December 2020 £ 146,194 |
|---|---|---|---|---|
| 14,123 - 1,013 |
||||
| 15,136 | ||||
| 161,330 |
Page 21
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
12. 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, including travel scholarships for parents and professionals.
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. Four ECHO projects took place in 2021 – the Leadership, Health, Latino-America and Caregivers. Funds were received from Pfizer and Friends of IPWSO USA in 2021.
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. £23,314 of the grant funding has therefore been disclosed as sponsorship income, which is deferred to 2022 (see note 9).
Mental Health Workshop - Funds received from Friends of IPWSO USA in support of IPWSO's mental health network including an event to be held in 2022.
Website Fund - Money received in 2020 from Friends of IPWSO USA specifically used to create and develop the website.
International Advocacy Support - Funds were received from Saniona to support IPWSO international advocacy work.
Education and Learning Support - A donation was received from Johnson & Johnson to be used for education and resources in support of learning (intellectual disabilities).
Superheroes Project – Funds from the University Court of the University of Edinburgh to support a venture with the University of Glasgow which brings together artists, researchers, people living with PWS and their families and carers to create an art exhibition about the challenges and experiences of living with PWS.
A transfer between funds may arise where costs have been incurred in an earlier year, prior to a restricted fund project being established.
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 22
INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021
13. Analysis of net assets between funds
Analysis of net assets between funds - current year
| Current assets Creditors due within one year Total |
Restricted funds 2021 Unrestricted funds 2021 £ £ 64,387 235,553 - (54,568) 64,387 180,985 |
Total funds 2021 £ 299,940 (54,568) 245,372 |
|---|---|---|
Analysis of net assets between funds - prior year
| Fixed asset investments Current assets Creditors due within one year Total |
Restricted funds 2020 £ - 15,136 - 15,136 |
Unrestricted funds 2020 £ 5,452 143,929 (3,187) 146,194 |
Total funds 2020 £ 5,452 159,065 (3,187) 161,330 |
|---|---|---|---|
14. 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 £1,520 (2020 - £517). £173 (2020 - £68) were payable to the fund at the balance sheet date and are included in creditors.
15. Related party transactions
The CIO has not entered into any related party transaction during the current or previous year, nor are there any outstanding balances owing between related parties and the CIO at 31 December 2021.
Page 23