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2023-03-31-accounts

REGISTERED CHARITY NUMBER: 1155846

REPORT OF THE TRUSTEES AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2023

FOR

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

CONTENTS OF THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2023

Page
Report of the Trustees 1 to 6
Independent Examiner's Report 7
Statement of Financial Activities 8
Balance Sheet 9
Notes to the Financial Statements 10 to 20

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2023

The Trustees of Prader-Willi Syndrome Association UK CIO (PWSA UK) present their report with the financial statements of the charity for the year ended 31 March 2023. The Trustees have adopted the provisions of 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).

OBJECTIVES AND ACTIVITIES

This section has been prepared in a way to ensure we meet the public benefit reporting requirements as set out in the Charity Commission reporting guidance.

The objects of PWSA UK (the Association) are to relieve the charitable needs of people with Prader-Willi syndrome and their families and carers by the provision of services, advice and support as the Trustees shall determine.

The vision of PWSA UK is to overcome the challenges of Prader-Willi syndrome.

The mission of PWSA UK is to ensure every member of the PWS community has access to high quality care, opportunity, and support, and to promote awareness, build knowledge and further research in order to overcome the challenges of PWS.

The values of PWSA UK are to work with those affected by PWS with integrity, objectivity, accountability, openness, honesty, and clear leadership.

Prader-Willi syndrome (PWS) is a rare complex disease which profoundly affects those with PWS and their families. PWS remains little understood relative to other conditions and as a result, the medical, social, educational, and parental support for those with PWS requires continued input and support from the Association.

The Association is UK wide and aims to meet the needs of those with PWS, parents, carers, academics, and professionals via the provision of information, training, advice, guidance, family friendly activities, crisis intervention, conferences, support for research and access to specialist expertise.

PWSA UK is a membership organisation and there is currently a modest membership subscription for families and professionals, and free to all people over 18 with PWS.

On 31st March 2023 we had 424 Subscribed Members and 323 Members with PWS.

Charitable activities

The Association meets its charitable and strategic objectives by providing a range of support services for people with PWS, their families and those who work alongside them.

Our staff team continue to support the PWS community by providing a telephone helpline, email and online support, a wide range of information resources, community days and weekends as well as providing training, and organising conferences.

Page 1

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2023

ACHIEVEMENT AND PERFORMANCE

1. To achieve sustainable growth

With the cost-of-living crisis, charities are facing significant financial challenges, and this is true for PWSA UK with reduced income and increased costs. Previous legacy income has sustained the charity, but this is an uncertain income stream. Going forward the Association will need to diversify its income streams to ensure it is able to achieve its strategic objectives.

The Association secured funding from Charities Aid Foundation (CAF) to develop an impact framework. This work is ongoing and a report setting out the impact of PWSA UK’s work will be available from late 2023. This is a key project to enable the Association to demonstrate the positive difference it makes to the PWS community.

2. To be the number one knowledge and information hub for PWS in the UK

We constantly review and update all our information and publications. Information and online resources are constantly being updated and gaps in information identified and filled.

Staff continue to attend PWS Specialist Clinics offering support and advice to families at locations across the UK. We continue to look at ways to increase our reach and ensure outreach at all locations.

PWSA UK delivered 20 training sessions during the year with 239 participants.

The PWSA UK Conference which was postponed twice due to Covid-19 restrictions went ahead over the weekend of 4th and 5th March 2023. 161 people attended the conference in Derbyshire with a full schedule of talks and events over 2 days.

3. To provide the best possible support to those living with PWS and their families and carers

The PWSA UK team supported families and professionals throughout the year with 1,071 issues which resulted in 2,682 actions (16% increase) phone calls, letters and meetings to resolve the issues. Support varies from practical advice, information, letters of support, mediation and attending meetings on families' behalf with professionals such as social workers, teaching staff and medical professionals. The number of queries is increasing as is the complexity of the issues being dealt with.

Our prime sources of requests for help were:

There were 40 new diagnoses reported to PWSA UK this year (an increase of 5) and a further 29 (an increase of 4) possible new diagnoses.

4. To maintain regional reach through its volunteer groups

Familynet (renamed as community days and weekends), is our network of peer to-peer support groups throughout the UK providing local social events, meetings, and support to the wider PWS community. During the year we delivered 72 events with a total of 1,152 attendees.

5. To be the voice for those affected by PWS

We continue to interact with our community and members through Facebook, Twitter and Instagram. We saw modest increases in all areas. In March 2023 we had 5,931 followers on Facebook, 1,465 Twitter followers and 1,108 followers on Instagram. Our closed Facebook Group for UK families is called PWSA UK Community Hub - Empowering Life with PWS and it has 673 members. We also host a closed group for siblings called PWSA UK - Sibs Hub which has 38 members. Social Media continues to be an important means of communication for our families and the Association continues to expand its communication through these platforms.

PWSA UK is increasing its work with adults with PWS and supports the OWL (Our Way of Life) group. The group meets regularly and has an annual conference. PWSA UK works with the group to develop and circulate a quarterly newsletter.

6. To support and promote research into the management and alleviation of PWS

PWSA UK continues to work with Pharmaceutical Companies interested in bringing trials to the UK with the aim that UK families will have opportunities to take part in these trials. We continue to provide information on up-to-date research to the PWS community. During 2022-23 PWSA UK commissioned a study into the needs of siblings of people with PWS. The University of East Anglia worked with siblings and produced a report outlining recommendations as to how PWSA UK can develop its information and support for siblings.

Page 2

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2023

ACHIEVEMENT AND PERFORMANCE - continued

Volunteering

The Association has always relied upon the commitment, goodwill, knowledge, and experience of its volunteers. We currently have 18 registered volunteers who organise and support community events.

The Association also relies on the goodwill and support of informal volunteers who raise funds, marshal at events, provide advice to the charity, serve as Trustees and much more.

We will always be grateful to our community and volunteers - without whom the charity simply would not be able to achieve what it does year on year.

Income Generation

PWSA UK is not only member-led but also depends on the fundraising efforts of its members for much of its funding. Without this, the Association would be unable to operate and continue to provide its vital services to the PWS community.

We are also very grateful to the following:

Grants and legacies not only enable us to continue our work with our PWS community but enable us to expand and increase the services that we offer in the future.

FINANCIAL REVIEW

Financial position

In the financial year under review, the Association received income of £383,383 (2022: £361,569) and incurred expenditures of £518,900 (2022: £364,343) resulting in a deficit on operating activities of £135,517 (2022: £2,774).

Income increased by 6% whilst expenditure increased by 42% compared with 2021-2022.

Total funds as at 31 March 2023 stood at £433,800 (2022: £569,317) of which £31,585 (2022: £61,259) are restricted funds.

Of the remaining funds £166,173 (2022: £227,180) are designated for specific projects.

The general environment for small charities continues to be financially challenging and the Association's ability to maintain a position of mid-term viability remains key to maintaining our charitable services.

Principal funding sources

The principal activities of the Association have been funded from our core income. The Association has been heavily reliant upon the efforts of our membership and others associated with the charity for their fundraising efforts.

However, the Association continues to be affected by the reduced levels of disposable income available to support the charitable sector and the continuing squeeze on our costs. Long term financial sustainability remains a top priority and the Association will seek to diversify income sources over the coming years.

Page 3

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2023

FINANCIAL REVIEW - continued

Investment policy and objectives

The investment policy of the Association is determined by the Trustee Board and enacted by the Chief Executive in consultation with the Finance Working Group. As of 31st March 2023, all reserves were held in the bank deposit account. There are no investments in equities, gifts, or bonds.

Reserves policy

It is the policy of the Association to maintain a general reserve as well as a designated reserve to support specific future projects. The "designated" reserves at the end of the financial year were £166,173. The charity Trustees will review this during the coming financial year to realign with a review of the plans, budgetary constraints and assessment of priorities.

The Trustees have agreed that the unrestricted reserves should not fall below six months’ operating costs. The balance of the Association's general reserves at the 31 March 2023 is £236,042 which represents 8 months of unrestricted operating costs. Whilst this is higher than the 6 months target, the Trustees have agreed a deficit budget for the year 2023/24 which projects that the reserves will fall to below the target 6 months within the year.

Pension Commitments

The Association operates a defined contribution pension scheme for its staff. PWSA UK reached their staging date for automatic enrolment in March 2016 and as required all eligible staff are enrolled into a qualifying pension scheme.

FUTURE PLANS

Strategic Objectives for 2023 - 24

Trustees continue to work towards the core strategic objectives of the Association. For each of these several key areas of work have been agreed for the year 2023 - 24.

1. To be the leading knowledge and information hub for PWS.

2. To provide the best possible support to the PWS community.

3. To be the voice of those affected by PWS.

4. To develop and maintain regional reach.

5. To support and promote research into the management and alleviation of the challenges of life with PWS.

6. To sustain the charity.

Trustees will work on plans during the year for the period 2024 - 2025.

Page 4

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2023

STRUCTURE, GOVERNANCE AND MANAGEMENT Governing document

The charity is controlled by its governing document, a deed of trust and constitutes an unincorporated charity.

Charity constitution

The Prader-Willi Syndrome Association UK (the Association) was originally registered as a charity on 13 May 1982: Charity Number 284583. In 2014 a new Charitable Incorporated Organisation (CIO) was formed and registered with the Charity Commissioners under Charity Number 1155846. The original Unincorporated Organisation Charity Number 284583 was then merged into the new CIO and all assets and liabilities transferred. The original unincorporated organisation was then closed and removed from the Charity Commissioner's register.

The CIO PWSA UK is controlled by its governing document and its registered address is in Northampton in UK.

Organisational structure

The Association is governed by a Board of Trustees consisting of not less than four members of the Association. These are elected by the membership for three years at the Annual General Meeting (AGM). At the first meeting after the AGM, the Trustees elect from its number a Chairman, Treasurer and Secretary who are known as the Honorary Officers of the Association. The Board of Trustees normally meets four times a year with one face to face meeting in London.

A new recruitment process has been agreed by the Trustees to ensure that Trustees are selected based on required skills and experience. Trustees are provided with a comprehensive induction pack and training with NCVO. Following a period as a ‘candidate’ Trustee, the prospective Trustee will be considered for election at a subsequent AGM.

During the year 2022/23 the Trustee Board operated a sub-committee structure of working groups to best use the diverse skills of its members; these working groups were:

The working groups operate within agreed Terms of Reference and make recommendations to the Trustee Board.

The day-to-day management of the Association's activities are delegated to the Chief Executive who reports on progress against plans agreed by the board.

The Association has a supervisory and appraisal system in place. All employees have a designated line manager who directs and supports staff to fulfil their own and the organisation's objectives which are consistent with the strategic aims set by the Trustee Board.

Declaration of Interest and Internal Controls

The Association has in place general decision-making and financial controls; the Chief Executive and all staff members are fully accountable to the Trustee Board and there are set levels of financial delegation requiring Trustee approval.

The Association has agreed a Declaration of Interest statement that requires board meeting participants to declare any pecuniary and non-pecuniary interest at the outset of every Board meeting. This is in addition to the Register of Interests and transactions with related parties’ annual declaration.

Risk management

The Trustee Board have agreed a risk management policy covering the principal areas of Governance, Operational, Financial, Environmental and External, Law and Regulation.

Trustees have developed a risk management register which identifies and assesses the likelihood and impact of organisational risks. Actions are agreed to mitigate risks to help Trustees identify and focus on residual risks.

The risk management policy and register are reviewed annually by the board. The board reviews higher risks on a more frequent basis to help manage uncertainty and to ensure delivery of objectives and the long-term survival of the Association.

Page 5

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2023

REFERENCE AND ADMINISTRATIVE DETAILS Registered Charity number 1155846

Principal address C/O Metcalf's Commercial Decorators Ltd Unit 5, 3 Deer Park Road Moulton Park Industrial Estate Northampton NN3 6RX Royal Patron HRH The Princess Michael of Kent Patron Prof Tony Holland BSc, MBBS, MRCP, FRCPsych, MPhil, Dipl Hum Clin Genet Trustees Danny Leslie (Chairman) Matthew Christensen (Treasurer) Andrew Abbott appointed 26 November 2022 Catherine Carey Flynn Castles stood down16 March 2023 Robin Chung Anne Good Anne Livesey Ian Metcalf Susan Passmore appointed 1 April 2023 Karen Potts Stefania Rosso stood down 16 March 2023 Stephanie Sokolowski Chief Executive and Honorary Secretary Susan Passmore until 31 March 2023 Jackie Lodge from 1 April 2023

Independent Examiner Johnson Tidsall Limited Chartered Accountants 81 Burton Road Derby Derbyshire DE1 1TJ

Bankers

HSBC Bank Plc 1 St Peters Street Derby Derbyshire DE1 2AE

Approved by order of the board of trustees on 18 November 2023 and signed on its behalf by:

........................................................................ D Leslie - Trustee

Page 6

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF PRADER-WILLI SYNDROME ASSOCIATION UK CIO

Independent examiner's report to the trustees of Prader-Willi Syndrome Association UK CIO

I report to the charity trustees on my examination of the accounts of Prader-Willi Syndrome Association UK CIO (the Trust) for the year ended 31 March 2023.

Responsibilities and basis of report

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

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

Independent examiner's statement

Since your charity's gross income exceeded £250,000 your examiner must be a member of a listed body. I can 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.

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

  1. accounting records were not kept in respect of the Trust as required by Section 130 of the Act; or 2. the accounts do not accord with those records; or

  2. 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.

David Mellor FCA

Johnson Tidsall Limited Chartered Accountants 81 Burton Road Derby Derbyshire DE1 1TJ

Date: 28 November 2023

The notes form part of these financial statements

Page 8

ADER-WILLI SYNDROME ASSOCIATION UK CIO

STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 MARCH 2023

Unrestricted
funds
Notes
£
INCOME AND ENDOWMENTS FROM
Donations and legacies
3
226,878
Charitable activities
6
Charitable activities
77,864
Other trading activities
4
5,217
Investment income
5
1,619
Total
311,578
EXPENDITURE ON
Raising funds
9,805
Charitable activities
7
Charitable activities
407,660
Total
417,465
NET INCOME/(EXPENDITURE)
(105,887)
Transfers between funds
17
44
Net movement in funds
(105,843)
RECONCILIATION OF FUNDS
Total funds brought forward
508,058
TOTAL FUNDS CARRIED FORWARD
402,215		 Restricted
funds
£
71,805
-
-
-
71,805
1,933
99,502
101,435
(29,630)
(44)
(29,674)
61,259
31,585		 2023
Total
funds
£
298,683
77,864
5,217
1,619
383,383
11,738
507,162
518,900
(135,517)
-
(135,517)
569,317
433,800		 2022
Total
funds
£
304,784
49,345
7,394
46
361,569
16,722
347,621
364,343
(2,774)
-
(2,774)
572,091
569,317

The notes form part of these financial statements

Page 8

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

BALANCE SHEET 31 MARCH 2023

Unrestricted
funds
Notes
£
FIXED ASSETS
Tangible assets
13
2,874
CURRENT ASSETS
Stocks
14
3,189
Debtors
15
4,763
Cash at bank and in hand
408,806
416,758
CREDITORS
Amounts falling due within one year
16
(17,417)
NET CURRENT ASSETS
399,341
TOTAL ASSETS LESS CURRENT LIABILITIES
402,215
NET ASSETS
402,215
FUNDS
17
Unrestricted funds
Restricted funds
TOTAL FUNDS		 Restricted
funds
£
-
-
-
36,830
36,830
(5,245)
31,585
31,585
31,585		 2023
Total
funds
£
2,874
3,189
4,763
445,636
453,588
(22,662)
430,926
433,800
433,800
402,215
31,585
433,800		 2022
Total
funds
£
2,417
3,382
39,810
539,329
582,521
(15,621)
566,900
569,317
569,317
508,058
61,259
569,317

The financial statements were approved by the Board of Trustees and authorised for issue on 18 November 2023 and were signed on its behalf by:

............................................. D Leslie - Trustee ............................................. M Christensen - Trustee

The notes form part of these financial statements

Page 9

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2023

1. STATUTORY INFORMATION

Prader-Willi Syndrome Association UK CIO is a charity, registered in England and Wales. The charity's registered charity number and business address can be found in the reference and administrative details of the Report of the Trustees.

2. ACCOUNTING POLICIES

Basis of preparing the financial statements

The financial statements of the charity, which is a public benefit entity under FRS 102, 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)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.

The currency basis for the preparation of these financial statements is pound sterling (£).

Going concern

The trustees regularly monitor the charity's reserves policy, risk assessment and cash flow to assess the viability of the charity. To date, no material uncertainties exist that would affect the preparation of the financial statements on a going concern basis.

Significant judgements and estimates

The following judgements (apart from those involving estimates) have been made in the process of applying the charity's accounting policies that have had the most significant effect on amounts recognised in the financial statements:

Legacies - when calculating amounts due on legacies, management considers the wills of the deceased, executors accounts, notifications received from executors and consultation with solicitors. Total per financial statements £35,669.

Grants - when calculating grant commitments, management considers the nature of the grants as being within the charity's objectives, their entitlement and the possible future benefits for people affected by PWS.

Income

All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received, and the amount can be measured reliably.

Donated services and goods are recognised as income when the charity has control over them, the economic benefit is probable and can be measured reliably. In accordance with the Charities SORP (FRS102), volunteer time is not recognised. Information about their contribution is provided in the Trustees' Annual Report.

For donations to be recognised the charity will have been notified of the amounts and the settlement date. If there are conditions attached to the donation and this requires a level of performance before entitlement can be obtained, then income is deferred until those conditions are fully met or the fulfilment of those conditions is within the control of the charity, and it is probable that they will be fulfilled.

For legacies, entitlement is the earlier of the charity being notified of an impending distribution or the legacy being received. At this point income is recognised.

Income from trading activities includes income earned from fundraising events and trading activities to raise funds for the charity. Income is received in exchange for supplying goods and services in order to raise funds and is recognised when entitlement has occurred.

Investment income is earned through holding assets for investment purposes such as shares and bank deposit accounts. It includes bank interest. It is included when the amount can be measured reliably.

Debtors

Other debtors are recognised at the settlement amount due. Prepayments are valued at the amount prepaid.

Page 10

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

2. ACCOUNTING POLICIES - continued

Expenditure

Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, 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 accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings, they have been allocated to activities on a basis consistent with the use of resources.

Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred.

Creditors

Creditors are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors are recognised at their settlement amount.

Tangible fixed assets

Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.

Fixtures and fittings - 25% on cost

Tangible fixed assets are stated at cost or deemed costs less accumulated depreciation. Cost includes costs directly attributable to making the asset capable of operating as intended.

Stocks

Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.

Stock is valued on a first in first out basis (FIFO).

Taxation

The charity is exempt from tax on its charitable activities.

Fund accounting

The charity has both restricted and unrestricted funds. All funds are used to benefit and promote its charitable objects.

Restricted funds are those donated for use in a particular area or for specific purposes, the use of which is restricted to that area or purpose and the restriction means that the funds can only be used for specific projects or activities.

When donors specify that donations and grants are for particular purposes which do not amount to pre-conditions regarding entitlement, this income is included in incoming resources of restricted funds when receivable. The relevant expenditure is then matched as restricted expenditure.

Unrestricted funds are general funds that are available for use at the trustees' discretion in furtherance of any objectives of the charity.

Designated funds are unrestricted funds set aside at the discretion of the trustees for specific purposes.

Pension costs and other post-retirement benefits

The charity operates a defined contribution pension scheme. Contributions payable to the charity's pension scheme are charged to the Statement of Financial Activities in the period to which they relate.

Operating leases

Rentals applicable to operating leases where substantially all of the benefits and risks of ownership remain with the lessor are charged to the SOFA on a straight line basis over the period of the lease.

Reserves

The charity maintains a level of reserves required to fulfil its objectives. The trustees monitor reserves at regular meetings.

Page 11

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

2. ACCOUNTING POLICIES - continued

Financial instruments

Financial instruments are classified and accounted for, according to the substance of the contractual arrangement, as either financial assets, financial liabilities or equity instruments. An equity instrument is any contract that evidences a residual interest in the assets of the company after deducting all of its liabilities.

3. DONATIONS AND LEGACIES

Donations
Legacies
4.
OTHER TRADING ACTIVITIES
Promotional sales
5.
INVESTMENT INCOME
Deposit account interest
6.
INCOME FROM CHARITABLE ACTIVITIES
Activity
Conferences holidays &
support
Charitable activities
Fundraising events
Charitable activities
7.
CHARITABLE ACTIVITIES COSTS
Charitable activities		 Direct
Costs (see
note 8)
£
497,868		 2023
£
263,014
35,669
298,683
2023
£
5,217
2023
£
1,619
2023
£
16,437
61,427
77,864
Support
costs (see
note 9)
£
**9,294 **		 2022
£
290,372
14,412
304,784
2022
£
7,394
2022
£
46
2022
£
16,660
32,685
49,345
Totals
£
**507,162 **

Page 12

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

8. DIRECT COSTS OF CHARITABLE ACTIVITIES

DIRECT COSTS OF CHARITABLE ACTIVITIES
Staff costs
Other operating leases
Insurance
Telephone
Postage and stationery
Printing costs
AIM management costs
Bank charges
Events
Travel and accommodation
Family weekend
Staff training
IT costs
Office machine maintenance
Subscriptions
Projects support
Research
SUPPORT COSTS
Human
Management
resources
£
£
Charitable activities
2,345
477		 2023
£
342,905
-
1,276
5,670
7,086
5,262
-
402
25,794
10,134
1,473
1,265
12,481
4,591
2,846
51,465
25,218
497,868
Governance
Other
costs
£
£
2,050
4,422		 2022
£
265,155
1,258
1,211
5,691
7,052
7,790
386
282
4,343
7,024
1,796
2,748
10,703
4,449
3,850
-
10,498
334,236
Totals
£
**9,294 **

9. SUPPORT COSTS

Accountancy and legal fees include £3,300 in respect of the Independent Examination fee.

Support costs, included in the above, are as follows:

2023
Charitable
activities
£
Trustees' expenses
2,345
Sundries
477
Depreciation of tangible fixed assets
1,908
Loss on sale of tangible fixed assets
142
Auditors' remuneration
-
Accountancy and legal fees
4,422
**9,294 **		 2022
Total
activities
£
2,396
3,140
1,465
-
4,932
1,452
13,385

Page 13

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

10. TRUSTEES' REMUNERATION AND BENEFITS

There were no trustees' remuneration or other benefits for the year ended 31 March 2023 nor for the year ended 31 March 2022.

Trustees' expenses

Trustees' expenses
Trustees' expenses relate to attendance at meeting costs.
STAFF COSTS
Wages and salaries
Social security costs
Other pension costs
The average monthly number of employees during the year was as follows:
Charitable activities
Management and administration		 2023
£
2,345
2023
£
303,786
27,265
11,854
342,905
2023
8
1
9		 2022
£
2,396
2022
£
236,463
19,459
9,233
265,155
2022
7
1
8

11. STAFF COSTS

During the year one employee (2022 one employee) received total employee benefits of more than £60,000.

The key management personnel of the charity comprises the Chief Executive Officer. The total employee benefits of the key management personnel of the charity, including employer's pension contributions, amounted to £72,191 (2022: £63,945).

12. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES

Unrestricted
funds
£
INCOME AND ENDOWMENTS FROM
Donations and legacies
209,056
Charitable activities
Charitable activities
49,345
Other trading activities
7,394
Investment income
46
Total
265,841
EXPENDITURE ON
Raising funds
11,725
Charitable activities
Charitable activities
250,862
Total
262,587		 Restricted
funds
£
95,728
-
-
-
95,728
4,997
96,759
101,756		 Total
funds
£
304,784
49,345
7,394
46
361,569
16,722
347,621
364,343

Page 14

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

12. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued

Unrestricted
funds
£
NET INCOME/(EXPENDITURE)
3,254
Transfers between funds
2,366
Net movement in funds
5,620
RECONCILIATION OF FUNDS
Total funds brought forward
502,438
TOTAL FUNDS CARRIED FORWARD
508,058
13.
TANGIBLE FIXED ASSETS
COST
At 1 April 2022
Additions
Disposals
At 31 March 2023
DEPRECIATION
At 1 April 2022
Charge for year
Eliminated on disposal
At 31 March 2023
NET BOOK VALUE
At 31 March 2023
At 31 March 2022
14.
STOCKS
Finished goods		 Restricted
funds
£
(6,028)
(2,366)
(8,394)
69,653
61,259
2023
£
3,189		 Total
funds
£
(2,774)
-
(2,774)
572,091
569,317
Fixtures
and
fittings
£
20,442
2,507
(320)
22,629
18,025
1,908
(178)
19,755
2,874
2,417
2022
£
3,382

Page 15

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

15. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR

Trade debtors
Other debtors
Prepayments and accrued income
16.
CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
Trade creditors
Other creditors		 2023
£
-
698
4,065
4,763
2023
£
-
22,662
**22,662 **		 2022
£
35,000
933
3,877
39,810
2022
£
90
15,531
15,621

17. MOVEMENT IN FUNDS

Unrestricted funds
General fund
Research
Communications Manager
Research: Ageing in PWS
PWS Siblings project
Restricted funds
Research
O.W.L Group
Children in Need
Research - Philip Barnes & Co Ltd
Research Rokeby School
Familynet events
Familynet Wales & Southwest
Familynet Cheshire & Hertfordshire
National Conference 2020 - Outsourcing
activities
National Conference 2020
Familynet Essex
CAF
ICAP
St James's Place
Awards 4 All
Toyota East Midlands
Jeans 4 Genes
TOTAL FUNDS		 At 1/4/22
£
280,878
19,956
57,224
100,000
50,000
508,058
1,924
3,981
23
4,361
315
767
1,938
1,000
1,576
709
1,414
33,431
7,320
2,500
-
-
-
61,259
569,317		 Net
movement
in funds
£
(44,836)
(10,000)
(37,059)
-
(13,992)
(105,887)
-
(221)
9,977
(4,273)
-
(767)
(926)
(1,000)
(1,576)
(709)
(1,414)
(33,431)
(4,396)
(2,500)
8,478
1,292
1,836
(29,630)
(135,517)		 Transfers
between
funds
£
-
44
-
-
-
44
271
-
-
-
(315)
-
-
-
-
-
-
-
-
-
-
-
-
(44)
-		 At
31/3/23
£
236,042
10,000
20,165
100,000
36,008
402,215
2,195
3,760
10,000
88
-
-
1,012
-
-
-
-
-
2,924
-
8,478
1,292
1,836
31,585
433,800

Page 16

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

17. MOVEMENT IN FUNDS - continued

Net movement in funds, included in the above are as follows:

Unrestricted funds
General fund
Research
Communications Manager
PWS Siblings project
Restricted funds
O.W.L Group
Children in Need
Hospital Saturday fund
Research - Philip Barnes & Co Ltd
Familynet events
Familynet Wales & Southwest
Familynet Cheshire & Hertfordshire
National Conference 2020 - Outsourcing
activities
National Conference 2020
Familynet Essex
Masonic Charitable Trust
CAF
ICAP
A Clark Automobiles
St James's Place
Boshier Hinton Foundation
Awards 4 All
Toyota East Midlands
Jeans 4 Genes
TOTAL FUNDS		 Incoming
resources
£
311,578
-
-
-
311,578
-
20,000
2,000
1,500
-
-
-
-
-
-
5,000
26,087
1
1,000
-
2,000
9,925
1,292
3,000
71,805
383,383		 Resources
Movement
expended
in funds
£
£
(356,414)
(44,836)
(10,000)
(10,000)
(37,059)
(37,059)
(13,992)
(13,992)
(417,465)
(105,887)
(221)
(221)
(10,023)
9,977
(2,000)
-
(5,773)
(4,273)
(767)
(767)
(926)
(926)
(1,000)
(1,000)
(1,576)
(1,576)
(709)
(709)
(1,414)
(1,414)
(5,000)
-
(59,518)
(33,431)
(4,397)
(4,396)
(1,000)
-
(2,500)
(2,500)
(2,000)
-
(1,447)
8,478
-
1,292
(1,164)
1,836
(101,435)
(29,630)
(518,900)
(135,517)

Page 17

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

17. MOVEMENT IN FUNDS - continued

Comparatives for movement in funds

Unrestricted funds
General fund
Research
Communications Manager
Research: Ageing in PWS
PWS Siblings project
Restricted funds
Research
O.W.L Group
Computer equipment
Children in Need
Familynet West Midlands
Research - Philip Barnes & Co Ltd
Research Rokeby School
Familynet events
Familynet Wales & Southwest
Familynet Cheshire & Hertfordshire
National Conference 2020 - Outsourcing
activities
National Conference 2020
Familynet Essex
Garfield Weston Foundation
CAF
ICAP
St James's Place
TOTAL FUNDS		 At 1/4/21
£
396,565
15,000
90,872
-
-
502,437
2,239
4,642
2,366
600
28
3,000
315
2,427
2,478
1,000
2,000
709
1,500
4,462
1,300
40,588
-
69,654
572,091		 Net
movement
in funds
£
46,947
(10,044)
(33,648)
-
-
3,255
(315)
(661)
-
(577)
(28)
1,361
-
(1,660)
(540)
-
(424)
-
(86)
(4,462)
32,131
(33,268)
2,500
(6,029)
(2,774)		 Transfers
between
funds
£
(162,634)
15,000
-
100,000
50,000
2,366
-
-
(2,366)
-
-
-
-
-
-
-
-
-
-
-
-
-
-
(2,366)
-		 At
31/3/22
£
280,878
19,956
57,224
100,000
50,000
508,058
1,924
3,981
-
23
-
4,361
315
767
1,938
1,000
1,576
709
1,414
-
33,431
7,320
2,500
61,259
569,317

Page 18

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

17. MOVEMENT IN FUNDS - continued

Comparative net movement in funds, included in the above are as follows:

Unrestricted funds
General fund
Research
Communications Manager
Restricted funds
Research
O.W.L Group
Children in Need
Familynet West Midlands
Research - Philip Barnes & Co Ltd
Familynet events
Familynet Wales & Southwest
National Conference 2020 - Outsourcing
activities
Familynet Essex
Garfield Weston Foundation
Masonic Charitable Trust
CAF
ICAP
A Clark Automobiles
P Sowerby Foundation
Alpkit Foundation
Postcode Lottery
St James's Place
TOTAL FUNDS		 Incoming
resources
£
265,841
-
-
265,841
-
-
-
-
1,500
-
-
-
-
-
5,000
58,261
-
500
9,116
150
18,701
2,500
95,728
361,569		 Resources
Movement
expended
in funds
£
£
(218,894)
46,947
(10,044)
(10,044)
(33,648)
(33,648)
(262,586)
3,255
(315)
(315)
(661)
(661)
(577)
(577)
(28)
(28)
(139)
1,361
(1,660)
(1,660)
(540)
(540)
(424)
(424)
(86)
(86)
(4,462)
(4,462)
(5,000)
-
(26,130)
32,131
(33,268)
(33,268)
(500)
-
(9,116)
-
(150)
-
(18,701)
-
-
2,500
(101,757)
(6,029)
(364,343)
(2,774)

Designated Funds as at 31 March 2023

Research - funding for research projects Communications Manager - 3 year funding for a Communications manager post Research: Ageing in PWS - funding for a specific research project PWS Siblings project - specific research

Restricted Funds as at 31 March 2023

Research - Funding for research projects OWL Group - support for meetings and awaydays Children in Need - Funding for a member of Support Team Research Philip Barnes - funding for research projects Research Rokeby - funding for research projects Familynet events - funding for family activities Familynet Wales and S West - funding for family activities Familynet Cheshire and Hertfordshire - funding for family activities National Conference 2020 - outsourcing activities - funding for creche facilities Familynet Essex - funding for family activities CAF - funding for Support Team and online activities ICAP - funding for family activities A Clark Automobiles - PWS animation project St James's Place - funding for animation videos Awards 4 All - funding for diagnosis support Toyota East Midlands - funding for East Midlands events Jeans 4 Genes - funding for diagnosis support

Page 19

PRADER-WILLI SYNDROME ASSOCIATION UK CIO

NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2023

17. MOVEMENT IN FUNDS - continued

Transfers between funds

Transfers represent reallocation between various research grants.

18. EMPLOYEE BENEFIT OBLIGATIONS

The total contribution paid to Personal Pension Plans in the year for certain employees amounted to £11,854 (2022: £9,233).

19. RELATED PARTY DISCLOSURES

There were no related party transactions for the year ended 31 March 2023.

Page 20