REGISTERED CHARITY NUMBER: 1155846 REPORT OF THE TRUSTEES AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDEO 31 MARCH 2025 FOR PRADER-WILLI SYNDROME ASSOCIATION UK CIO Johnson Tidsall Limited Chartered Accountants 81 Burton Road Derby Derbyshire DE1 1TJ
PRADER-WILLI SYNDROME ASSOCIATION UK CIO CONTENTS OF THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 Pago Roport of th• Tru8tO•9 Ind•p•nd•nt Examlneeg Report stst•m¢nl of Flnanclal Actlvltles 10 Balanc• Sheet 11 Cash Flow Stat•ment 12 Not•s to the Cash Flow Stal?m?nt 13 Not•$ to Flnanclal Slatgm•nts 14 10 26 Dfrtalled Ststem•nt ol Flnanclal Aetlvltlos 27 10 28
PRAOER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 The Irusléès presenl thèir report wilh the financial slalements ol the charity f¢y Ihe year ended 31 March 2025. The Injstees have adopted Ihe provisions of Accounting and R&porting by Charitses". Slatemenl of Recommended Praclice applicable to charities preparing Ihoir accounts in accordance with the Financial Reporting Standard applicable in Ihe UK and Republic ol Ireland IFRS 1021 (effective 1 January 2019). OBJECTIVES AND ACTIVITIES Oblectives and alms This seclion has been prepared Sn a way lo ensure we rneel Ihe public ben8lil reporting requirements as sel oul in ihe Charity Commission reporting guidance. The objects of PWSA UK {Ihe A55ocialion) are lo relieve the charitable needs of people with Pr3der-Willi Syndrome and their familie5 and carers by Ihe provision of services, advice and support as the Truslees shall determine. The vlsion ol PWSA UK is lo overcome Ihe challenges of Prader-willi Syndrome. The mission of PWSA UK is lo ensure every member of Ihe PWS cornmunily has access lo high quality care. opportunity and support. and lo promote awarengss. build knowledge and further research in Order to overcYJme Ihe challenges ol PWS. - The values of PWSA UK are lo work wilh Il¥)se affecled by PWS wilh inlegrity. objeclivSty, accnunlabilily, openness, honesty. and clear leadership. Prader-willi Syndrome IPWS} is a rare complex disease which profoundly alfects those with PWS and their families. PWS remains litlle understood relative lo other conditions and as a result. the medical. social, educational. arKJ parenlal support for those with PWS requlres continued input and support from the A550cialion. The Association is UK wide and alms lo meel the needs ol Ihose with PWS. parents, carers, academics, and prof8ssionals via the provision of information, training, advice, guidance, family friendly aclivilies, crisis intervention, webinars, support for research and access lo specialist expertise. PWSA UK is a membership organisalion, and the decision was laken during the year lo remove all subscription fees. On 31 sl March 2025 we had 970 members in total which is an increase of over 20% from the previous year. Charltable acllvltles The Assoaalion meets ils charitable and strategic objectives by providing a fange of support services for people with PWS, their families and those who work alongside them. Our staff learn continua lo support the PWS community by providing a telephone helpline, email and online support. a wide range of information r8sources including a comprehensive web5ile, community days and weekends. The leam provides training and OTganises inlormats'on updales through webinars and a regular newsletter We Pfovide peer lo peer support meetings. attend PWS clinics lo meel families and visit parents of newly diagn¢)sgd families 31 home. Page 1
PRADER.WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 ACHIEVEMENTS AND PERFORMANCE Trusts•8 agreed several koy ar¢a3 of work for the year 2024- 25 for the slx core stratéglc obJ8ctlva8 of tho Assoclatlon. The board Mvlèwod progress agalnst Iheso 8poclll¢ ar?as at the quartèrty m4etlngs. 1. To bè the leadlng knowledge and Informatlon hub for PWS. The websi18 conllnues lo be the primary informalion resource for the PWS communily. We update inforrnalion regularly and continue to ensure that this is designed for our key audiences.. families. prolessionals and adults with PWS The quarterly OWL magazine is prinled and senl lo all registered adults with PWS {curr&ntly 335). The PWS quarterly magazine is published electronically and urculaled via email and is also available on tha website. An engagement and communications plan Is in place whith ts driving a more proacllve and planned approach.The 'PWS Portion Size, resource was finaliséd. The resource was developed through a nalional working group with extensive experience In PWS, working with the Nutrition and Dial Resources UK, a soaal enterprise charily who develop nulrilional resources. The resource was peer reviewed and Val818d for nutritional adequacy. Common foods were used to calculate a9e specific food portions. and 348 pholographs of these portions were taken to produGe the resource. Over 2.000 copies have been order8d wlth over 1,400 onllne reads. The 'Consensus' best practice guldance was developed by PWS clinicians and was published in Endocrine Conneclions Summary infoimalion was developed for familles and is avallable on the PWSA UK websile under 'Are you gelling the Ri9hl Care? PWS 8esl Practice Guidelines,. PWSA UK d81ivef8d 37 IrainSng 3ession5 during Ihe year with 845 partidpanls. Thesè training sessions v18re mainly lor professionals working in education. health and social care. This is an increase of over SOOA from Ihe prevrous year. The BOSS (Build our Social Skills) training for adulls has been piloted and Is belng delivered during 2025. Makaton is a useful communlcalion tool and level 1 training has been delivered for 11 parents. Trustoes have agreed to pdoritise IraSnlng lo support slandards of care and SUPPOfl for people with PWS. 2. To provlde tho best posslbl• 8UPPOrt to th• PWS community. The PWSA UK team supported families and prolessionals Ihmughout the year with 1.180 people accesslng our servlces whlch resulted in 2,755 actions Iphone calls, lellers, and me81in9s) lo resolve the issues. Our prime sources of requèsts for help were: Helpline 25% Email 60% - Facebook.. 6% Clinicsl Family Net.. 1% - Websile.. 8% More families are tnnlacting us via email wlth a modesl Teduclion in the number of calls to Ihe helpline. An online conference was held in S8plember 2024 wlth over 100 people joining the meeting. 19 community events were held across the UK with 624 allendees. Community days and weekends ar8 a vital opportunity for PWS families to meet and connect and lo reduce Ihe isolation of livlng with a rare condlllon. Two new parenl-lo-parenl fowms wer8 established in response to requests from members. The firsl 15 for MUPD parenis and the ser£)nd is specifically for farnilies wilh adults aged over 40 years. PWSA UK is cornmilled to workin9 wilh PWS residential caro providers to improve standards ol care and quality of life for adults with PWS. A forum of PWS providers has been established with opportunit185 to18am and network Ihrough online webinars and meelings. A Charter for Care Homes has be8n drafted and will be rolled out lo encourage adoption of core slandards. A provlder list {PWS Care Home diiectory) Is being d8V81op8d and will include expanded information for parents and commissioners, A survey of parenls ol adults in care home sellings has been undertaken as well as planning for regular'listenin9' meetings. PWSA UK has worked in an advisory capacity with several provid8rs who are l¢)oking lo set up new services in underseryed parts of UK. 3. To be Ihe volc¢ of those affe¢t8d by PWS. Page 2
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 The Association monilors the Issues and chalwges faGed by the PWS community and Teviews11s informalion and support to reflect these needs. 495 fesponses lo monitoring and evaluation surveys have been reiVed during the year. Informallon from the SUeyS Is analysed wilh reportlng lo the slaff and board of Iruslees lo help inform plans and make change5 and improvements lo services. Membership of PWSA UK grew from 800 to 971 members which is an increase of 171 or over 20 h The Assodalion is commilled lo engaging wilh and listening lo Ils members and holds biannual Town Hall events Wofking with and sUPlXJrting advlls with PWS remains a key priority across the AssocJalion and the OWL (Our Way of Lifel group made up of adults with PWS has been promoled and 8xpanded with direct reporting lo Ihe board of Irusle8s. The A550aalion remains commiiled lo working In partnership With allied PWS organisalions FPWFI UK ané IPWSO as well as organisalions wllh overlapping obieclNe5 such as Sibs UK, The Genetlc Alliance and the Disabled Children's Partnership lo achieve rn0 by working together. There ha5 been a concerted effort to develop effective working relationships durin9 the year. Partnerships have been developed with Smilh-magenis Syndrome Foundalion UK, Angesman UK and the Disabled Children's Partnership where there have beèn shared areas of Intafesl and opportunity lo achieve more by working logelher 4. To dev•lop and malntain roglonal roach. PWSA UK is committed lo supportlng all people impaded by PWS and annually map our a¢h and engagemenl There has been 8 20% Increase In the numbers of people engaging with PWSA UK across the UK and nolably higher in Scotland and London Funding was secured lo amploy a part lime PWS Specialisl Support Worker in Northern Ireland Work has started to reach PWS families in Norihern Ireland and engaging wllh heèllh. educatson and social care professionals. We remain commilled to increasing our in-counlry support for Scotllsh PWS families and Ihis is a pnorily for 2025 Over the pasl year we have seen an increase of 2.3% of non-white members We can now track our year-on-year progress of reaching isolated families againsl the baseline eslabl6hed In 2024 The number of volunteers working wth PWSA Uk has grown through the year from 31 10 37 an increase of almost 20Vo In addition. Ihe Association Is fortunate lo benefit from the voluntary support of Ihe Board of Trustees as well as the OWL focus group made up ol adults with PWS. Outreach al PWS cllnics has been Increased Ihrough the r8cruilmgnl 012 new volunleers during Ihe year. A priorily is lo increase outreach Ihiough recruilm8nl of addilional volunleers as well as allocaling staff lime to Ihi5 importanl ObjectVe of raaching lamilies impacte(J by PWS. S. To 8UPPOrt and promot• re*earch into the managoment and allevlatlon of the challenges ol Ilfe wlth PWS. PWSA UK continues lo work in partnership with FPWR UK through the PWS Stronger Togalher inilialive. Through Ihis collaboration Ihr8e webinars have been delivered to provide updates on PWS dinical Irials. PWSA UK continues lo provide input into Irials and studies as Ihe patient voice as well as promoting opportunitses lor partiCiP81ion in clinical trials and research. During May 2024 PWS Slronger Togelher ran a campaign 10 raise awareness of PWS and raise funds lor research inlo ageing in PWS. £14,000 was raised anij buildings across Ihe UK were lil up in orange on PWS awarenes5 day. The Medical Advisory and Research Commillee reviewed and fecommended proposals lo lund a survey into premature deaths of people with PWS. The principal aim of Ihe study is lo help prevent fulure early dealhs of people wilh PWS. Re5ear¢h proposals have been submilled for ethics approval. 6. To sustaln Ihe charlty. Three new Iruslees were appointed during the year bringiro wilh them skills in fundraising, comrnunicalions and mafkeling. Trustees i(ientified a gap in Irustee5' experience ol parenting an adull with PWS. The board conlinues lo aGlively manage SUCC8ssK)n planning and recruil Injslees to meel any gaps in skills, knowledge and experience. The first lrnpad Report was produced and published. Monitorin9 and evaluation have been embedded inlo the Wofk ol the Association lo feed into a cullure of learning and responding lo feedback. All organisalions are al risk ol cyber-allacks and slafl have undertaken cyber security awareness Iraining and are Subject lo periodic lesling. Page 3
PRADER.WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 Income from Trusts and Foundations has seen a drop from £100K to £40K. This is consistent with Ihe charity sector experienc8 of increased competilion and reduced availability of funds. This has been offset by increased income from legacies, major onors and events. A new fundraising plan has been agreed which focuses on diversilication and developing digital skills and the supporter Journey. Trustees continue lo dosely monitor staffing costs whilst reGognising thal the work of Ihe 14ssocialion is delivered by the staff team. Job descriplions and person specifications for all staff have been reviewed. updated and agreed. New HR contracts have been issued and signed. Managemènt of Payroll, pensions, HMRC and HR policies have been transferred lo a new HR system lo ensure wmpliance and improve 8ffici8ncies. Voluntéarlng The Association has always relled upon Ihe cornmilmenl. goodwill, knowledge, and experience of ils volunleers. We currently have 37 registered volunteers who organise and support community events and facllilate parent lo parent meètings online. Trustees and the OWL group volunteer iheir lime, knowledge, skills and lived experience to guide Ihè Assoeialion. The Association also relies on the goodwill and support of informal volunteers who raise funds. marshal al evenls, provide specialisl skills lo the charity, and much more. We will aayS be grateful to our cnrnmunily and volunlaets - without whom the ¢harity simply wo(Jld nol be able to achieve what il does year on year. Incom¢ G•n•ratlon PWSA UK is nol only member-led but also depen<is on Ihe fundralsing efforts of its members for much of its funding. Without this, the Associalion W¢Id be unable lo operate arKS continue lo provide Ils vital services lo Ihe PWS community. The fvndraising environment remains challenging with Ihe ongoing Cost of living crisis and Increased compelilion for Trusts and Foundations funding. We aré hugely grateful to the following.. Awards for All (Children in need)- Nl - £18.073 Better Breaks So)tland . £6,750 - Toyota- Wales- £1,824 Hanley Trusl - £1,QN)O J4G Granl- Core- £750 - Inch Cape Foundation- SlIand- £750 Augusline Courtauld - cvre- £2,000 - Harry Krish Mooloosamy Foundalion - Music Therapy al aVen1se8kends - £2,000 Philip Barnes & Co- Research- £1,500 - Saturday Hospilal Fund- new diagnosis packs- £1,92S . St James Place - core - E2.500 Ecdesiaslil Group - core - £1,500 Souter Charitable Trusl- walkov8rs - £1,000 - Happy Days Charity- Comm weekend - £688 FINANCIAL REVIEW Flnanclal posltlon In the flnancial year under r8view. Ihe Association received income of £ 657,800 (2024.. £497.574) and incurred expenditure ol £507,975 12024.. £501,101) resulting in a surplus on operating activities of £149,82512024'. deficit £3,527}. Income increased by 32 % whilst expenditure increased by 1 % compared with 2023-4. Total funds as at 31 March 2025 stood at £ 580.09812024.. £430,273) of which £46,723 {2024'. £83,618) are reslricled funds Of the remaining funds £144,70012024.' £116.003) are designated for specilic projecls. Page 4
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 FINANCIAL REVIEW Principal funding sources The principal aclivilies of (he Association have been funded from our core income The Associalion remains felianl upon the efforts of our membefship and oihers assooaled wilh Ihe charity for Iheir fundraising efforts. The general environment for small chafilies continues lo be financially challenging and the Associalion's ability lo maintain position of mid-term viabilily remains key to maintaining our charilable services. Competition for an(fj availability of funding Irom Trusts and Foundalions is a challenge across the Charilable seclor and il is vilal Ihal PWSA UK continues lo diversify ils income. Long lerm financial sustainability remains a lop priority, and Ihe Associalion conlinues lo seek lo diversify income sources. Investmènt policy and objectlves The investment policy of the Association is determined by Ihe Trustee Board and enacted by the Chief Execulive. As of 31 st March 2025. all reseNes were held in Ihe bank deposil account and money market short term deposits. Thgre are no investments in equities, gifts, or bonds. Roserv•s poll¢y 11 is the policy of the Associalion to maintain a general ieseNe as well as a designated reseNe lo support specific fulure projects. The"designale(I" res8rves al the end of Ihe financial year were £144.700 The charity Truslees will review Ihis during tha coming financial year lo realign with a review of the plans, budgetary nSIf81n1s and assessment of priorities. The Trustees have agreed that the unreslricled reserves should nol lall bel¢)w six months. operaling costs. The balance of the Association's general reserves al the 31st of Marth 2025 is £388,676 which represenls 9 months ol unrestricted operallng costs which is in line with the target set by Trustees. Ponslon Commitmenls The Associalion operates a defined contribution pension scheme for ils staff. PWSA UK reached their staging dale for automatic enrolmenl in March 2016 and as required all eligible slaff ar& enrolled into a qualifying pension scheme. Page 5
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 FUTURE PLANS Strateglc Objectlves for 2025-26 Trustees conlinue lo work towards the core strategic objectives of the Assoaalion. For each of these several key areas of work have been agreed for Ihe year 2025-26 1. To be th¢ laading knowledge and Informatlon hub for PWS. - Continue lo improve the website, wllh a focus on SEO and planning a fulure review ol the suitability of the websitè Dgvelop and maintain clear, multi-use resources on behavi¢)ur, menlal healih. legal and Iransilion infomialion, ageing, PWS related lerrninology, and care options for adults with PWS. wilh scheduled reviews and a content sign-off process. Conducl a full raview of training needs and plan annual webinars, deliver and evaluate BOSS training, appoint a training manager. and develop accredited training for professional caregivers. 2. To provld• th• bast posslbl• support to the PWS communlty. Deliver engaging community events and peer support groups, while using face-to-lace opportuniti8s lo connect, share, and support informal l&arning within Ihe PWSA UK community. Provide effective one-towone supporl lor individuals wllh PWS and their families, supported by expert panel review, Improved dala systems, and a collective advocacy approach for parenls of care home residenls. Gr¢)w a community ol professional caregivers, build nelworks with expert social workèts. promote PWS awareness al key conferences, and support the development of specialist services by identifyin9 gaps and needs. 3. To th• volce of thos8 affecl¢d by PWS. Establish a system to track trends and inform support and Campaigns. - Strengthen the OWL group's volunteer role. Develop and implement a worklng cafe plan for adulls wilh PWS. Promote and grow free mgmbgrship beyond 1,000. Slren9then engagemenl Ihrough surveys. listening events, and targeted campaigns. Dgveloping evidence-based policy on key issues and building strategic partnershlps lo amplify the YO of those affected by pws. 4. To develop and malntaln roglonal reach. Conduct annual mapping lo assess reach and service provision across UK. Grow dinie outreach and netsvorks (induding isolated and divetse communilie5). Secure funding for a specialist role in Scotland. Expand and cenlralise volunteer managemenl. Explore the development of a hub-and-spoke model lo b¢JOSt engagement with key setvices and professionals. S. To support and promoto rns•aTch Into Ihe managam•nt and allevlatlon of the ¢hallonges of Ille wSth Pllls. - Support and promote fesearch partnerships and clinical Irial engagement in partnership wilh FPWR UK through PWS Stronger Together. - Align PWSA UK priorllles with evidence-bas8d sludies. Continue to provide regular research updates. Conduct a suNey inlo PWS-relal8d dealhs. 6. To gustaln Iho ¢harlty. Maintain slron9 governance with succession planning. appoint a new Chair by 2026 and plan a full strategic review for 2026- 27. Embed monitoring and evaluation using impacl data Upgrade IT and cybersecurity and develop business conlinuily plans. Review CRM for b8tler integration and fundraising. Urgenuy divatslfy income amid growing competition lor Irusts and foundations, exploring digital fundraising campaigns. devdoping the supporter journey, and increasing income from corporates, pharmaceuticals, and training. Ongoiro prudenl financial management lo match expenditure lo income, as well as ongoing control of fixed costs. Increase support and developmenl of volunteers. Fosler a learrwng culture wilh continuous improvement and refresh and embed charity values. Develop moniloring of training, compliance. and asset managemant through HR syst. STRUCTURE, GOVERNANCE AND MANAGEMENT Govèrnlng document The charily is wnlrolled by ils governin9 document. Ihe charity conslilulion. Page 6
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 STRUCTURE, GOVERNANCE AND MANAGEMENT Charity constitution Th8 Prader-willi SyrKlfome Association UK Ilhe Association) was originally registered as a charity on 13 May 1982.. Charity Number 284583. In 2014 8 new Charilable Incorporaled Organisalion (CIO) was formed and registered with the Charily Commissioners undef Charity Numbe( 1155846. The original Unincorporaled Organisalion Charity Number 284583 was then m8rged ifjlo the new CIO and all assets and liabilities Iransferred, The original unincorporaled organisalion was then closed and removed from Ihe Charily Commissionerfs register. PWSA UK was registered in October 2024 with the Scotlish Charity Regulalor (OSCR) with the new number SC053700. The CIO PWSA UK is controlled by its governin9 document. and its wistered address is in Northamplon in UK. Organlsatlonal structure The Association is governed by a 8oard of Trustees consisting of not less than lour membws of the Association. These are elected by the membership lor three years al the Annual General Meeting IAGMI. Al the fiist meeting after Ihe AGM, the Trustees elecl from ils number a Chairman and Treasurer who are known as the Honorary Officers of ihe Association. The Board of Truslees normally meels four limes a year with one face lo lace meeting in London. A new recruilmenl process has been agreed by the Truslees lo ensure that Trustees ara salecl8d based on required skills and experience. As part of the ongoing review of governanc8 the pr8vious working gfOUPS were closed and replaced by new sub- committees which beller meg1 Ihe ngeds of our operations.. Finance and General Purposes Committee Medical Advisory and Research Committee Services, Information and Training Commillee Fundraising and Communiealions Committee The commillees operate wilhin agreed Terms of Reference and make re)MMendatIOnS lo the Trustee 8oard. The day-to.day management of the Association's activities are delegated lo the Chief Executive who reports on progress against plans agreed by the board. The Associalion has a supeNisory and appraisal system in place, All employees have a designaled line fflanagef who directs and supports slaff lo lulfil their own and the Ofganisalion's objeclives which are consislenl wllh Ihe slralegic alms sel by Ihe Truslee Board. Declaratlon of Interest and Inlernal Controls The Associalion has in place general decision-making and financial controls., Ihe Chief Executive and all slaff members are fully accountable lo the Truslee Board and lhe are set levels of financial delegalion iequiring Truslee approval. The A550ci31ion has agreed a Dedaralion of Inleresl sl3lement Ihal requires board rneeling participan15 to declare any pecuniary and non-pecuniary interest al Ihe outset of every Board meeling. This is in addition lo the Regisl8r of Interests and Iransaclions with related parties. annual declaralion. Rlsk managèment The Trustee Board have agreed a risk managemenl policy covering the prinupal areas of Governance, Operational, Financial. Environmental and Exlem31, Law and R8gulalion. Trustees have developed a risk management re9isler which idenlilies and assesses Ihe likelihood and impact ol organisalional risks. Aclions are agreed lo miligale risks lo help Trustees identify and IocLts on residual risks. The risk managèment policy and regislei are reviewed annually by the board. The board reviews higher risks on a more frequenl basis lo help manage uncertainly and to ensure delivery of objectives and the long-lerm survival of the Assooalion. Page 7
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENOED 31 MARCH 2025 REFERENCE AND ADMINISTRATIVE DETAILS Raglstered Charlty number England and Wales.. 1155846 Scotland: SC053700 Prlnclpal address CIO Melcalf Commercial Decoralors Ltd Unil 5, 3 Deer Park Raad Moulton Park Induslrial Estat8 Northampton NN3 6RX Royal Patron HRH Tho Princess Mithael of Kent Patron Prof Tony Holland CBE Tru•ts•• Ll Col Danny Leslie M8E (Chairman) Matlhew Christensen (Trgasurer) Andrew Ablxslt Cathérine Carèy (rèsigned 15 SepteMr 20241 Dr Robin Chung Dr Evellen Gevers Anne Good Dr Anne Livesey lan Metcalf (stood down 19 October 2024- end of maximum term of office) RebecLa Neish (appointed 19 Oclober 2024) Susan Passmore Laura Pearson (appolnted 19 October 2024) Rose Polaschek Karen Potts Stephanie Sokolowskl (respJned 19 July 2024) Flona Swinhoe (appointed 19 Oclober 20241 Chlgf Ex•¢utlv• and Honorary Sg¢retary Jackie Lodge Ind•pond•nt Examln•r Johrtson Tidsall Limited Chartèred Accountants 81 Burton Road Derby Derbyshirè DE1 1TJ Bankors HSBC Bank PIC 1 St Peters Street D8rby D8rbyshire DE1 2AE Approved by order of the board of trustees on ......18110125.................................... and slgned on its behalf by.. D Leslie- Trustee Page 8
INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF PRADER-WILLI SYNDROME ASSOCIATION UK CIO Independent examiner's report to the trustees of Prader.Wllli Syndrome Asso¢ialion UK CIO I report lo the charity Ifuslees on my examination of the accounls of Prader-willi Syndrome Association UK CIO (the Trust) for the year ended 31 March 2025. Responslbllltles and basls of report As Ihe charity Iruslee5 of the Trust you are responsible for the preparation of the accounts in acCLsrdan wilh the requiremenis of the Chariiies Act 2011 {'Ihe Act'>. I report in fespecl of ffly examinalion ol the Trust's accounts carried out under Section 145 of the Act and in carrying out my examinalion I have followed all applicable Dire¢lions given by the Charity Commission under Section 145(5llb) of the Acl. Independent examlner's statement Since your charily's gross income exceeded £250,000 your examiner musl be a member of a lisled body. I can confirm Ihal I am Qualified lo undertako Ihe examinalion because l am a member of Ihe Inslilule ol Chartered Accounlants in England and Wales, which is one of the lisled bc*Jies. I have completed my exarninalion. I confirm that no malerial mallers have come lo my allention in cnnneclion wilh Ihe examination gtving me cause lo believe that in any material respect.. accounting records were not kept in respect of the Trust as r8quired by Section 130 of the Act, or the accounts do not accord with those records," or the accounts do not comply wth the applicable requiramenls concerning Ihe form and conlenl of accounls sel out in the Charities (Accounts and Reports) Regulalions 2008 other than any requirement that the a¢UnIS give a true and fair view which is nol a maller considered as parl of an independent examination. I have no concerns and have come across no other mallers in Connection with the examinalion lo whlch altenlion should be drawn in Ihis report in order lo enable a proper underslandin9 of the accounts lo be reached. David Mellor Johnson Tidsall Limiled Chari8red Accounlants 81 Burton Road Derby Derbyshire DE1 1TJ Oale.. Page 9
PRADER-WILLI SYNDROME ASSOCIATION UK CIO STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 MARCH 2025 2025 Total funds 2024 Tolal funds Unreslricled funds Re5tTicled funds Notes INCOME AND ENDOWMENTS FROM Donations and legacles 488.353 44,985 533,338 402,4SO Charltable actlvltles Chafilable aclivilies 102.206 102,206 79.177 Olher Ifading aclivitses Inveslmenl income 5,519 5,519 10.737 4,531 11.416 Tolal 612 815 657,800 497.574 EXPENDITURE ON Raising funds 16.761 408 17.169 13.798 Charltable acti1105 Chan'table aclivilies 469 216 490 806 487.303 Total 485 977 507 975 NET INCOMEIIEXPENDITUREI Trangl•rs botwean funds 126,838 39,882 22,987 39,882 149,825 {3,5271 18 Net movement In funds 166,720 (16,895 149,825 (3,527) RECONCILIATION OF FUNDS Total funds brought forward 366,655 63,618 430,273 433,800 TOTAL FUNDS CARRIEO FORWARD 533 375 580 098 The notes form part of these financial statements Page 10
PRADER-WILLI SYNDROME ASSOCIATION UK CIO BALANCE SHEET 31 MARCH 2025 2025 Total funds 2024 Total funds Unrestricted funds Reslrlcted funds Notes FIXED ASSETS Tangible assets 14 3.744 3.744 3,598 CURRENT AsseTS Stocks Deblo Cash at bank and In hand 15 16 3.051 20.398 S13 SIS 3.051 20,398 4.186 9.853 421658 536,964 46,722 583,686 435,697 CREDITORS Amounts falling due wlthln one year 17 (7,332) (7.332) (9,022) NET CURRENT ASSETS 529,632 576,354 426.875 TOTAL ASSETS LESS CURRENT LIABILITIES 533,376 46,722 $80,098 430,273 NET ASSETS 533 376 580.098 430,273 FUNDS Unrestricted funds Restricted funds 18 533,376 46,722 366,655 63,618 TOTAL FUNDS 580 098 430 273 The financSal statements were approved by the Board of Trustees and authori88d lor issue on .18110125........................................ were slgned on ils behall by.. O Lesli&- Trustee K Potts - TnAeo The notes form part of these financial 3lalem8nts Page 11
PRADER-WILLI SYNDROME ASSOCIATION UK CIO CASH FLOW STATEMENT FOR THE YEAR ENDED 31 MARCH 2025 2025 2024 Notes Cash Ilows from opèratlng activlll¢s Cash generated from operations Nel cash provided byl{used inl operaling aclivities 124 402 32,1341 Cash flow$ from Invostln9 actlvllles Purchase of langible fixed assets Interest received 12,560) <3,2601 11.416 Nel cash provlded by invg51ing activities Change In cash and cash equlvalents In the reportlng perlod Cash and cash equlvahnts al tho beglnnlng ol rèportlng Poflod 138,579 (23,978) 445.636 cash and cash equlvalont• at the end of the rgportlng perlod 560,237 421,658 The noles form part ol these financ¢al slolemenls Page 12
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE CASH FLOW STATEMENT FOR THE YEAR ENDED 31 MARCH 2025 RECONCILIATION OF NET INCOMEI{EXPENDITURE> TO NET CASH FLOW FROM OPERATING ACTIVITIES 2025 2024 Net In¢om¢l(expenditure) for Ihe reporting perlod {as per Ihe Statement of Financlal Acllvities} Adjustments lor- Depreciation charges Loss on disposal of fued a5sels Inleresl received Decreaseqincreasel in slocks Increase debtors Decrease in creditor5 149,825 {3.5271 2,103 311 (16,7371 1.135 110.545) 1,690 2.536 {11.416) 19971 15,090} 13,640 Net cash provld•d byllusod In) op•ratlons 124,402 32,134) ANALYSIS OF CHANGES IN NET FUNDS Al 114124 Cash flow At 3113125 Net cash Cash al bank and hand 421,658 138.579 560,237 421,658 138,579 580,237 Total 421 658 138,579 560 237 The notes form part of these financial slalemenls Page 13
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 STATUTORY INFORMATION Prader-willi Syndrome Associ81ion UK CIO is a charity, regislered in England and Wales. The charily's re9islere charity number and business address can be found in the referen and adminislralive details of the Report of the Trustees. ACCOUNTING POLICIES Ba819 of proparlng the flnanclal statements The financial slalements ol the charity, which is a publlc benefii entity under FRS 102. have been prepared in accordance with the Charities SORP (FRS 102} 'AcntIng and Reporting by Chariknas.. Slatemenl of Recommended Practice applicable to charities preparing their accounts in accordance wilh the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 102) leffeclive 1 January 20191.. Financial Reporting Standard 102 'The Financial Reporting Slandard applicable in the UK and Republic of Ireland, and Ihe Charities Act 2011. The financial stalemen15 have been prepared under the historical cost convention. The currency basis for the preparation of these financial statements is pound sterfing 1£). Golng concem The Iruslees regularly monitor Ihe charity's reserves policy, risk as5855menl and &gsh flow lo assess the viability of the charity. To dale. no material uncertainties exist that would affect the preparation of the financial slalemenls on a going concern basis. Slgnlflcant ludgomonts and ¢stlfflal?s The following judgements {apart from Ih05e involving eslimales) have been madg in Ihe process of applying Ihe charity's aeKAJunling policies that have had the most significant effect on amounts recognised in the financial statements: Legacies when cal¢ulaling amounts due on legacies, management considers the wi115 of the deceased, èxecutors accnunts. nolificalions received Irom executors and consullation with solicilors. Grants - when calculating grant commilmenls. management considers the naturè of Ihe grants as being within Ihe charily's obieclives. their entitlement and the possible future benefits for people affected by PWS. Income All Income Is regnised in Ihe Statemènt of Finanaal Aclivities On the ¢harily has entillemenl lo the funds, il is probable Ihat Ihe Income wlll b8 received and the amount can be measured reliably. Donated seNi¢es and goods are recognised as IncL+me when the charlly has control over them, the economic b8nefit is probable and can be measured reliably. In accnrdance with the Charilies SORP (FRS102), volunteer lime is nol recognised. Information about their Gonlribulion Is provided in the Trustees. Annual Report. For donations lo be recognised the charity wlll have been nolified ol Ihe amounts and Ihe settlement dale. If there are condrtions attached to the donaliorn and this requires a level of performance before enlillemenl can be obtain8d, then income Is deferred until those conditions are fully met or the fulfilmenl of those condilions is wilhin the control of the charity and it Is probable Ihat they will be fulfilled. For legae5. enlillemenl is Ihe earlier of the charily belng notified of an impending distribution or the legacy being recelved. At this point income is rew3nised. Income from trading activities includes Income eamed from fundraising Évenls and Irading activities to raise funds for the chanty. Income is receNed in exchange for supplying goods and seThic8s in order to raise funds and is r8cognis8d when enliilement has occurred. Inveslmenl income is earned through holding assets for Investment purposes such as shares and bank d8P0511 accounls. It Includes bank Inleresl. It IS included when the amount can be measured reliably. Debtors Other dèbtors are recognised al the settlement amount due. Pfepaymenls are valued at the amount prepaid. Page 14
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2025 ACCOUNTING POLICIES - contlnued Expendltura Liabil'lles are recognised as eKpendilure as soon as Iherels a legal or conslruclive obligation commiltiri9 Ihe charity to Ihat exp8ndllure. 11 Is probable that a Irav)sfer of ecorK)mic benefils will be required in selllement and the amounl of the obligation can be measured rellably Expenditure Is accounted for on an accruals basis and has been classifi8d under headings Ihal aggregate all CLJSI r81aled lo Ihe calegory. Where o)sts cannot be directly 3llnbuled lo particular haadings they have been allocaled lo activities on a basis consislenl with Ihe use of resources. Irrecoverable VAT is charged as a cosl against the activity for which the expendllvre was incurred. Credltor8 Creditors are recognised where the charity has a present obligalion resulling frorn a pa51 evenl that will probably result in the Iransfer of funds to a third party and the amounl due to sellle the oblallOn can be measured or eslimaled reliably. Creditors are recognised al their selllemenl amount, Tangible fixad assets Deprecialion Is provided al the following annual rates in order lo write off each asset over its eslimaled useful life. Fixtures and fillings 25gA on cost Tangible fixed assals are slated at cost or deemed costs less accumulated depreciation. Cost indude5 cosls direclly altribuiable lo making Ihe assel capable of operaling as intended. Slock$ Slocks are val¢Jed al the lower of cosl and net realisable value, after making due allowance for obsolete and slow moving items. Stock is valued on a first In first out bas15 IFIFO}. Taxatlon The charity is exempl Irom lax on its charilable activilies. Fund accountlng The charity has both restricted and unreslricled funds. All funds are used lo benefit 8nd promo18 ils charitable objects. Reslricled lunds are those donated for use in a particular area or for specific purposes, the use of which is reslricled lo Ihal area or pUoSe and the resiriclion means Ihat Ihe funds can only be used for specilic projects or aclivilies. When donors sp8crfy Ihal donations and 9ranls are lor particular purposes which do nol amount lo pre-conditions regarding enlillemenl, this income is includ8d in incoming resources of r8slricled funds when receivable. The relevanl expenditure is then matched as reslricled 8xpendilure. Unrestricted funds are general lunds that are available for use al tha Irusl8es' discrelion in furtherance of any objectives of the charity. Designa18d lunds are unreslrided fund5 sel aside al the discrelion of the Iruslees for specific purposes. Pension Costs and other post.relirernent ben¢llts The charity operales a defined contribution pension scheme. Conlribulions payable lo the charily's pension schéme are charggj lo Ihe Slalemenl of Financial klivilies in the period lo which they relate. Operating leases Renlals applicable to operaling leases where subslanlially all of the benefits and risks of ownership remain wilh the lessor are charged to the SOFA on a slraighl line basis over the period of Ihe lease. Page 15
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2025 ACCOUNTING POLICIES- contlnuod Operatlng leases Ro8orve8 The chan'table company mainlains a level of resérves required lo fulfil its objectbves. The trustees monitor reservès al regular meetings. Flnanclal instruments Financial instruments ar8 dassified and accA)unled for. according to the substance of the cnntraclual arrangement, as eilher financial assets, finanthal Iiabililies or equity Irfjlrumenls. An equity inslrurnenl 15 any contract Ihal evidences a residual inleresl in the ass8ls ol the company after dedu¢lirvJ all of ils IabIlitIes. DONATIONS AND LEGACIES 2025 2024 Donations Legaues 349,236 402,450 533 338 402 450 OTHER TRADING ACTIVITIES 2025 2024 Promolional sales INVESTMENT INCOME 202S 2024 08posll account Inte$1 11.416 INCOME FROM CHARITABLE ACTIVITIES 2025 2024 Adivily Conferences holldays & support Fundraising events Charilable aclivities Chadtable activities 23,397 20.965 58,212 102 206 79.177 Page 16
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCtrI 2025 RAISING FUNDS Other trading aclivllies 2025 2024 Fundraising expenditure 13.798 CHARITABLE ACTIVITIES COSTS Direcl Cosls (see le9) Support coslslsee note 101 Totals Charitable activities 483,676 7,130 490 806 DIRECT COSTS OF CHARITABLE ACTIVITIES 2025 2024 Staff costs Insurance Telephone Poslage and slalionery Printing costs Bank charges Events Travel and accommodalion Staff Iraining IT costs Office machine maintenance Subscriptions Proie¢ts support Research 393,807 1.631 4,950 4.035 1.114 316 14,918 9,420 3,192 17.906 77 4,640 18,956 8,714 406,353 1.316 4,670 6,4S1 5,012 419 10.755 8,158 3,150 16.495 4.757 2,738 3.061 5.875 483,676 479.210 10. SUPPORT COSTS Human resources Gov8rnance costs Management Other Totals Charilable aclivities 501 46 2,414 4,169 Pago 17
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2025 10. SUPPORT COSTS- continued Accountancy and legal lees Include £3,500 in respect of the Independenl Examination fe8. Support costs, included In the above. are as follows". 2025 Charitable adivities 2024 Total activities Trustees. expenses Sundries Depreciatlon of tangible fixed assels Loss on sale ol tangible fixed assels Accountancy and legal fees 501 46 2.103 311 1,197 254 2,536 4.106 11. TRUSTEES, REMUNERATION AND BENEFITS There were no Iruslees, remuneration or olher benefits for the year ended 31 March 2025 nor for the year ended 31 March 2024. Trusl?08' oxpenses 2025 2024 Truste88' expSe$ S01 1,197 Truslees. expenses relale lo attendance al meeting costs 12. STAFF COSTS 2025 2024 Wages and salaries Social secunty Costs Other pension costs 348,426 28,329 359,892 30,499 159fj2 393 807 406,353 The a¥erage monthly number of employees during the year was as follows.. 2025 11 2024 Charilable activities Management and administration 12 10 During the year on8 employee (2024 one employee) CVed lolal employee benefits of more than £60.000. The key management personnel of the chariiy comprlses the Chief Executive Officer. The lotsl omployee benefits of Ihe key managem8nt personnel of the charity, Induding employerfs pension conlribulions, amounted to £88.15712024. £89.1731 Page 18
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2025 13. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES Unreslricled funds Reslficled funds Tol81 lunds INCOME AND ENDOWMENTS FROM Clonalions and legaCS 324.108 78.342 402,450 Charltable actlvlt105 Charitable activitie5 79,177 79,177 Other Iradlng adivilies Investment ino)me 4,531 11,416 4,531 11,416 Total 419.232 78,342 497,574 EXPENDITURE ON Ra1r4 funds 12,083 1,715 13.798 Charitable aellvltles chaIrtab activities 437.468 49,835 487,303 Total 449,551 51,550 501.101 NET INCOMEIIEXPENDITURE) Transfers bgtwe•n funds 130,3191 5,2421 26,792 5.242 {3,5271 Nel movement In funds 135.561 > 32,034 13,527) RECONCILIATION OF FUNDS Total funds broughl forward 402.215 31,585 433,800 TOTAL FUNDS CARRIED FORWARD 366 654 63,619 430,273 Page 19
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2025 14. TANGIBLE FIXED ASSETS Fixtures and fittings COST Al 1 April 2024 Additions sposaL 25,889 2,S60 Al 31 March 2025 27.826 DEPRECIATION At 1 April 2024 Charge for year EllmirKAled on d6posal 22,291 2.103 312 At 31 Marth 2025 NET BOOK VALUE At 31 March 2025 At 31 March 2024 15. STOCKS 2025 2024 F*iBhed goods 4,188 16. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2025 2024 Trade debtors Olher deblors Prepayments and accrued Inrne 12,803 642 3,923 759 Page 20
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2025 17. CREDITORS.. AMOUNTS FALLING DUE WITHIN ONE YEAR 2025 2024 Other credTrlors 9.022 Page21
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2025 18. MOVEMENT IN FUNDS N8t movement In funds Transfers between funds Al 3113125 Al 114r24 Unra8trlcted funds General lund Research Research. Ageing in PWS Residenllal Care Project Manager Staff and Trustee Away Day Clinics Ageing Research - Jamés Ellis Community Events - Harringlon OWL Focus Group - Harrington Residential Care Project Manager- Harrilon Engagement and Comms Manager Boss Training Radio 4 Appeal 2025 Report into PWS Oealhs Famliy W8ekends - Crown Holdings Tralning - Crown Holdlngs 2SO,652 10,000 98.000 2,218 3.000 2,785 67,209 (404) 70,815 (1,832) {50,000) 12,1981 13,0001 12,6721 2,000 12,117) 388,676 7.764 48.000 (20) (113) 2,000 5,619 10.000 7.738 10,000 23,909 {435) (18) 19,348 (12,410) 11,717 1,$00 11,499 11,282 1.482 19,348 5,000 17,878 4.828 5,000 18,000 5,079 (122 366,655 126.839 39.882 533,376 Restrlctod fund$ O.W.L Group Children in Need Research - Philip Barnes & Co Ltd ICAP Alpkll Foundation Awards 4 All Better Breaks SlIand 2023 Poslcode Places Northern Ir8land TSG Foundation PWSA Funds- Tha Big Give Campaign The Whrtèhead Monckton Trusl D'oyly Carter Chanlable Trust Awards lor All Beller 8reaks ScL)Ilané 2024 Wales - Toyola Scotlands Events - Inchcape Foundatson Music Therapy- HKM Charlly New Diagnosis Packs - The Hospilal Saturday Fund Walkover Events UK- Souler Chantable Trust PWSST - Agong Research 3,209 9,725 (1,558) 12251 1,368 {331 (51 (8351 (15) (1,478) {3) 1,651 19,500 1,368 447 (414 3,162 274 19,38S 11.102 5,211 7,586 352 3,160 2,327 1259) (15,762) 2,145 11,099 15,2111 (7,5861 (2501 11.150} 14,606 2,666 1,824 750 1,406 (1021 (1.9601 (4.145) (2,666) 50 10,481 1,824 (750) 1,406 1.661 (9251 736 1,000 1Q,843 1,000 1,812 63,618 TOTAL FUNDS 430,273 149 825 580 098 Page 22
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2025 18. NOVEMENT IN FUNDS . continued Net movement in funds, included In the above are as follows Incoming resoufces Resources expen(ied Movement In funds Unrestrlcted funds General fund Reseafch R8sidenlial Care Project Manager Clinics Community Events- Harringion OWL Focus Group - Harrington Residential Care Project Manager- Harrington Engagement and Comms Managef Boss Training Radio 4 Appeal 2025 Family Weekends - Crown Holdings Training - Crown Holdings 547,174 1479,965) 1404) (20) 1113) 13,557) 67,209 {404) 120) {113) 7.736 10,000 11.293 10,000 24,999 (1.090 1436) (18 23.909 1435) <18) 19.348 (122) 19,348 (122) 612,B15 1485,976) 126.839 Restrlctèd funds O.W.L Group Children in Need Resaarch Philip Barnes & Co Ltd ICAP Alpkit Foundation Awards 4 All Better Breaks Scotland 2023 Poslcode Places Norihern If813nd PWSA Funds - The 819 Giv8 Campaign The Whilehead Moncklon Trusl D'oyly Carter Chantable Trusl Award5 for All Beller Breaks ScA)Iland 2024 Wales - Toyota Scollands Events - Inchcape Foundation Music Therapy- HKM Chanly New Diagnosls Packs - The Ph)spSlal Saturday Fund Walkover Events UK - Souter Charitable Tru51 PWSST - Ageing Research (1,5591 (225) (132) 133) (si (8351 1151 (1,479) {3) (7,S86) {250) 11,150) 13,467) (4.084) (1,558) 1225) 1,368 (331 1,500 (8351 {1,4781 {3) {7.586) (250) (1,150) 14,606 2,666 1,824 750 1,406 18,073 6.750 1,824 750 2,000 {594) 1,925 {284) 1,661 1,000 11,161 1,000 44,985 21.999 TOTAL FUNOS 657.800 50T.975) 149.825 Page 23
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- Gontlnued FOR THE YEAR ENDED 31 MARCH 2025 18. MOVEMENT IN FUNDS- continued Comparatlves for movemenl In funds N81 movamenl In funds Transfers between funds Al 3113124 Al 114123 Unrestrlcted funds General fund Re39arch Communlcallons Manager Research. Ageing In PWS PWS Siblings prqecl Residential Care Prolecl Manager Staff and Trustee Away Day Clinlcs 236,042 10,000 20,165 100.000 36.008 (156) 14.766 250.652 10.000 (20.165) 12,000) {36,008) 10,000 3,000 s,000 98.000 (7,7821 2,218 3,000 2.2151 402.215 {30,318) (5,2421 366.655 R¢strlct•d lund8 Research O.W.L Group Children In Need Research - Phllip Bames & Co Ltd Famdyn81 Wales & Soulhwesl ICAP Alpkil Foundallon Awards 4 All Toyola East Midlands Jeans 4 Genes Beller Breaks Scotland 2023 Toyota P05tcode Places Northern Ireland TSG Foundation PWSA Funds . The By Glve Campaign rhe Whrtehead Moncklon Trust D'oyly Carter Charitsble Trust 2,195 3.760 10.000 88 1,012 2.924 (2.195) 1551) 12751 15,333) 11,012) (2,477) 3,209 9,725 5,245 447 8.478 1.292 1.836 (5.316) {494) 11.836) 274 17951 19,385 11,102 5,211 7,586 352 3,160 3.162 (798) 274 795 19.385 11.102 5.211 7,586 352 3.160 31,585 26.791 5.242 TOTAL FUNDS 433.800 430,273 Page 24
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2025 18. MOVEMENT IN FUNDS . contlnued Comparatve nel movement in funds, included in the above are as follows.. Incoming resource5 Resou$ expended Movement in funds Unrestricted funds General fund ComrnuntslK)ns Manager Residential Care Projecl Manager Clinics 419.232 {419,388) 120.1651 {7.7821 1156) (20.165) (7.782) 419.232 {449.5501 (30.3181 Restrlcted funds Research O.W.L Group Children In Need Re$ear¢h - Philip Barnes & Co Lld Familynel Wales & Southwest ICAP Alpkil Foundation Awards 4 All Toyota Ea51 Midlands Jeans 4 Genes Beller 8feaks Scotland 2023 The Ardwck Trusl FB Coates No 4 Toyota Poslcnde Places Thomson Roddick Scollish Auctions Norlhern Ireland TSG Foundation PWSA Funds - The Big Give Campaign The Whitehead Moncklon Trusl D'oyly Caner Charitable Trusl (2.1951 15521 (10.2751 {6.833> 11,012) 12,478) (415) 15,316) (494) 11,8361 16,7061 12001 {1,000} 17951 {4,705) 11,761) 1401 (4,7901 (2.195) 1551) 1275) (5,333) (1,012) (2.477) 10,000 1.500 420 (5,3161 (4941 (1,8361 274 6.980 200 1,000 1795) 19,385 24.090 1.761 11,142 10,001 7,586 500 3,160 11,102 5.211 7.586 352 3.160 (148) 78,342 51.551 26,791 TOTAL FUNDS 497,574 501,1011 3,5271 D¢$lgnated Funds a$ at 31 March 2025 Research - funding for research proiecis Research. Ageing In PWS - funding for a specific research project Rasidenlial Care Proiecl Manager- funding for all ralevanl costs in relalion lo residential care Ageing Research ~ James Ellis - Funding lor research Into tha ageing process and eff8cls on thos8 with PWS Community Evenls -Harrington - Funding lor all expenses in relation lo Ihe cost ol organising and execuling community events within Ihe UK OWL Focus Group - Harrington . Funding for all associaled costs lo enab18 the OFG members {adults with PWSI to lake part In a focus group quarterly both face to face and virtually Engagemenl and Comms Manager Funding for the role of Engagement and Communications Manager and all associated cosis lo enable fuifilment ol their lol Boss Trainlng - Funding towards a project worker lo deliver BOSS (Be our suessful self) lo adulls with PWS Radio 4 Appeal 2025- Fundiro towards Ihe cost of operating Ihe he,'pline Report into PWS Dealhs - Research Inlo premature dealhs within Ihe PWS communily and why Family Weekends - Cfown Holdings - Funding towards all associated Gosts lo enable Ihe successful OfganEalion and execution of all Community Family weekend evenls Page 25
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2025 MOVEMENT IN FUNDS- Conllnued Training . Crown Holdings - Funding lowards (raining Sts for stafflvolunteers to refresh on essential Irainirng and upskill RestrScted Funds as at 31 March 2025 OWL Group - support for meeliros and awaydays Fafflilynel events funding for family aclivllles Fafflilynel Cheshire and Herttordshire - funding for famlly activities National Conference 2020 - outsourcing acliviti8s - funding lor creche lacililies Familynet Essex funding for family activllles CAF - fundffjg for Support Team and onllne aclivities Awards4 All . funding for diagnos6 SUPPOrt Bell8r Breaks Scotland - for use in Srx)tland only, for cnmmunily eventslfamily weekends Postcode Places - for a new post recruited in January 2024 - volunleer Cordinal0r who is taking a lead in all Ihings volunteer related Northern Ireland - for work lo be undertaken within Northern lfeland lo reach thé community Iherg TSG Foundalion - this is towards a new diagnosis lead in Ihe support teams salary PWSA Funds - The 8ig Give Foundation - to develop a resource for the communily on how besl lo control diet within pws The Whrtehead Monckton TnJst - towards any cosls relallng lo the PWS Walkover cornrnunily event laking part In Haslings In July 2024 D'oyly Cartgr Charitable Tftjsl - to be used against any costs againsi Ihe Dorsel Communily vekend laking place In September 2024 Wales - Toyota - Funding towards cnmrnunily events within Ihe Wales area onty Scotlands Events- Inch¢ape Foundation - Funding lowafds rJ)mmunily 8venls within Scotland only Musi¢ Therapy - HKM Charity - Funding towards aclivilies that Involve music therapylsensory activities lor those wllh pws New Diagnosis Packs - The Hospital Salurday Fund - Funding towards sensory baskets and Information packs for New Diagnosis bables and families Walkovèr Evénts UK - Souter Chanlable Trusl- Funding towards Wa*over community events and all associated cost$ lan outsid8 activity involving a walk around a counlry parkl PWSST - Ageing Research - Funding towards Research into Ihe Agang Process and the effects on those wilh PWS 19. EMPLOYEE BENEFIT OBLIGATIONS The lolal contribution paid lo Personal POnsn Plans in the year for c8rtain employees amounlgd 10 £17,05212024. £15.962) RELATED PARTY DISCLOSURES There were no related party Iransxti)ns lor the year end 31 March 2025. Page 28
PRADER-WILLI SYNDROME ASSOCIATION UK CIO DETAILED STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 MARCH 2025 2025 2024 INCOME AND ENDOWMENTS Donatlons and legacies Oonalions Le9a¢ies 349.236 184.102 402,450 533,338 402,450 Other tradlng actlvltlos Promotional sales 5.519 4.531 Investmént incom• Deposil account Interest 16,737 11.416 Charltable a¢tivllio8 Conferences holidays & supporl Fundraising events 23.397 20.965 58.212 102,206 79,177 Total Incomlng resources 657,800 497,574 EXPENDITURE Other tradlng actlvltles Fundraising expendilure 17,169 13,798 Charltablg a¢tlvlt103 Wages Social secunly Pensions Insurance T8lephone Postage and slalionery Pfinling costs Bank charges Events Travel and accommodation Staff training IT costs Office machine rnalntenance Subscriptions Projecls support Research 348,426 28,329 17,052 1,631 4,950 4,035 1,114 316 14.918 9,420 3,192 17,906 77 4,640 18.956 8,714 359,892 30.499 15,962 1.316 4.670 6,451 5,012 419 10.755 8,158 3.150 16.495 4,757 2,738 3.061 5.875 483,676 479.210 Support costs Thls page does nol form part of the slalulory financial slalernenls Page 27
PRADER-WILLI SYNDROME ASSOCIATION UK CIO DETAILED STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 MARCH 2025 2025 2024 Support costs Managemènt Truslees, expenses 501 1.197 Human rèsourcès Sundries 46 254 Other Fixtures and fillings Loss on sale of tangible fixed assets 2.103 311 2.538 2,414 2,536 Governance costs Accountancy and legal f88s 4,106 Total resources expended 507 975 501,101 Net Incomollexp?ndlture) 149 825 3,527) This page does not form part of the stalutory financial slalemenls Page 28