REGISTERED CHARITY NUMBER: 1155846 REPORT OF THE TRUSTEES AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 FOR PRADER-WILLI SYNDROME ASSOCIATION UK CIO Johnson Tidsall Limited Chartered Accountants 81 Burton Road Derby Derbyshire DE11TJ
PRADER-WILLI SYNDROME ASSOCIATION UK CIO CONTENTS OF THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 Page R•port of the Tm8tee8 Independent Examlnof8 Report Statement of Flnanclal A¢tlvltle8 10 Balance Sh••t Note8 to t FInala1 Statem•nl• 12 to 23
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 The trustees present Ihelr port with ihe financial 8tat8menls of the chaiity for the year ended 31 March 2024. The trustees have adopted the provisions of Accounting and Reporting by Charities.. Statement of Recommended Pra¢ticE applicable to charities preparing their acCcnIS in accordance with the Financial Reporting Standard appliGable in the UK and Republic of Ireland (FRS 102) {effecliv8 1 January 2019). OBJECTIVES AND ACTIVITIES ObJectlve8 and alms Thls section has been prepared in a way la ensure we meet Ihe public benefit reporting requirements as Set out in the Charity Commission reporting guidance. The obJ•¢ts of PWSA UK (the Associallon) are to relieve the charilable n88ds of people wilh Prader-wlli Syndrome and their families and carers by the provlsion of s8rvi¢es, advice and support as the Trustees shall detemiine. The vlslon of PVISA UK Is to overcome the challenges of Prader-wlll Syndrome. The m188lon of PWSA UK is to ensure every member of the PWS community has acce88 to high quality care. opportunity, and support, and lo promote aWane&S. bulld knowledge and further research in order to overcome the challenges of PV48. The valu•s of PWSA UK are to work wrth th• affted by PWS with integrity, objectivity, accountabllity. op8nne8$, ht)nesty, and clear leadership. Prader-wlli Syndrome (PW3) is a rare Complex disease whlch proloundty affects Ih08e wilh PWS and their famllles. PWS remain5 little undefStt)od relative to other conditions arKI as a rèsult. the medlcal, 50clal, educatlonal, and parental support for Ihose with PWS requires ¢onlinued input and support from the As$ociatS0n. The A880ciatlon Is UK wide and aims to meet the needs of those wilh PWS, parents, car8, academic5, and professionals via the provision of infomalion, training, athice. guidance, famlly friendly aclivitles, cri818 inteNention, conferences, SUPPOrt for re$oarch and access to 5peciallst expertise. PV%EA UK is a membership organi8alion. and the decision was taken during th• year to remove all 8ubscflIon fees. On 31st March 2024 had 806 members in total lincludlng 345 Members with PWS) whlch is an incrèase of almost 8% from the previous year. Charitable activlti The A$$ociation meets its charitable and strategic objectives by providing a range of support 8erviGes for peoplè wlth PWS. Iheir families and th¢)se who work alongsbje them. Our staff team continue to support the PWS community by providing a telephLe helpline. email and online support, a wlde range of infomation resources, community days and weekends as well as providlng Irainlng, and organi3ing confer8nce8 and webinar8. Page 1
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 ACHIEVEMENT AND PERFORMANCE Charltable actlvltles Trustees agreed Soveral key areas of work for the year 2023 24 for the slx core 8trateglc obJectlv88 of the A8sociation. The board revlewed progre$$ against the8e 8peclfic areas at the quarterly meotlngs. 1. To bo the leadlng knowledge and Informatlon hub for PWS. Revlew of website to slmplify Infomiatlon with Specific arga for adults wlth PWS. A re-Stw¢ture and update of the web$•te took place during 2023 whith now focuses on three distinct audiences (parents, professionals. and adults with PWS). - Dellver quorterly weblnafs on PWS toplc•. Four webinars were delivered during the year with 39 attendees. In addition, four Makalon sessions were dellvered online with 53 attendees. - Develop PWS portlon 61z• rn8ource. An expert steèring group has been established lo oversee Ihe developmenl of th8 re80urce. PWSA UK has engaged The Nutrition and Diet Resources UK, to projecl manage Ihe development of Ihe resource which wlll be availabl8 lata summer 2024. Funding has been secured for the development and dellvery of this resource. 2. To provlde the •t PQ88lble 8UPPOrt to the PWS eommunlty. The PWSA UK team supported familles and professlonals throughout the year with 1,154 issues whlch resulted in 2.738 actions {2% increase) phone calls, letters, and meelin9S to resolve the Issues. Our wime source5 01 request8 for help wer•: Helpline 350 - Emall 4V - Facebook.. 10% - Clinicsl Family Net. 2% - Website.. 6% The were 31 new di8gnose8 reported lo PWSA UK this year and a further 23 possib18 new diagnoses. More lamilies are conla¢ling us via email with a modest feductlon in the number of calls to the helpllne. PWSA UK delivered 22 training sessions during the year with 29) participants. Th88e liainlng se88ion8 wem malnly for wofessional8 vrkIng in education and health and social care. . Develop plan of UK wlde event8 and ¢onfer•nce8 for key PWS 8lak•hold•r8. PWSA UK manages a network of peer-lo-peer support groups and nehvorking events across the UK. Thls Includes community days and weekends as well as online peer to P8er meelins8, During Ihe year we deliv8red 69 events with a total of 1147 attendees. - D•flno ¢a8e work And bu8ln•s¥ case lo further develop support lor PWS communlty. Work has slarted on 8coping ihe key slep8 for different areas of case work. A small Sub9rp hos been eslabllshed 10 oversee this work. - Féa8lblllty work to deflne PWS UK rol• in supportlng b88t 8tandard8 and quallty of Ilfv In PWS ro•ldenllal 8ètt1ng•. A fixed term project manager was appointed lo scope opllons 8S to how PWSA UK could influence slandards of care in PWS residenllal settings. Engagement work has been undertaken wilh parent5, adults wlth PWS and care home providers. Feasiblllty work is now looking al several apwoaches including app-based Iralnlng for care home staff, a forum for professional carers,. and large4 consultancy 8nd tralning for PINS sp8clali$t care home provlders. 3. To b• tho volc• of tho•e affectsd by PWS. . L18tenlng (Town Hall) events wlth Chalr and CEO for PWSA LIK membernhlp. We held tha first Town Hall evenl in October 2023 with Ihe $8cond one in April 2024. Membarn joined the Chair of trustees and CEO to hear updates and then share Iheir 11)oughl8 on work of the Associalion. Several areas were discussed including support for older families; support for community events lo allow families lo nelwork and a desire to know mor8 about clinical trials. - R•vlow of membernhlp fe•8 to In¢re08e engag•ment wlth PWS communlty. We consulted with the PWSA UK membership. and il was agieed to remove the charge for membership. The aim is to increase engagement through removing any financial barrier to memb&rshlp. This change came into effect In A1 2024 and there has been an inuease in Ihe mefflbership numbers of 50 (from 75010 800). - Further devolop engagement wlth adults wlth PWS to en8ure Ihelr volce Is heard. Working with and supporting adults with PWS has been a k8y priority aGross the Association during th8 year. The OWL (Our Way of Lifel group has been promoted and expanded and the first adult conference planned for April 2024. . Bulld rolatlonshlp¥ and sharo data wlth koy Influèn¢lng oryanlsatlong. Page 2
PRADER-WILU SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 There has been a concerted effort to develop effective worting relab'onships during the year. Partnershlps have been developed with FPWR UK. IPWSO. Sibs UK 8fKI the Disabled Children's Partnetship where there hav8 b88n shared areas of interest and opportunity to hleVe mor8 by working together. 4. To develop arKI malntaln r•glonal r•a¢h. - Benchmafk reach acn)$8 UK and target area8 of lowest ongagement. A mapping exercise was undèrtaken to identify lower areas of engagement whl¢h identifled Scotland. Northem Ireland and London as key areas. During the year we have increased our overall reach by just over 1% but a 2% increase in Scotland, a 5Vo increase in Northern Ireland and a 2Yo increase in London. We havè developed plans to increase our engagemenl in these 8reas as well as a specific plan for EDI (equality, diversity, and inclusion). Our program8, events and activities are planned in different geographical locations a$ well as providing broader range of activities. - Dovolop volunteer network to 8UPPOrt 8•rvice dellvery arKI UK reach. Funding was secured for a part time Volunleer Development Officer who was appointed in January 2024. The aim is to develop robusl systems and wocesses, establish volunlaer trainlng and Support resultlng in an increased pool of volunteers that refle¢l the PWS community. - Map PWS 8peclall•t cllnlcs and d•velop outreach. A Projecl Manager was appointed for a Short perlod of lime to map the PWS clinics across the UK. One of Ihe wtcomes is a firm recommendation to establish outreach volunteers to attend all PWS cilnlcs. PWSA UK is now working on plans to recruit and support a UK wide team of outreach dinic volunteers. 6. To Support and prnmol• r•••arch Into tho managornont and allevlatlon of thg ¢hall•ngo8 of Ilh wlth PWS. . Collaborate wlth key partner8 Includlng FPWR UK and IPWSO. This ha8 been a key area of focus for PWSA UK and we have been realignlng outselve8 wlth FPWR UK and are committed lo working collaboratively on fijrtherlng PWS research. The fo3 ha8 been on t4VO principal areas, the first being a joint awareness Cam1gn (Move It May) and ralsing additional funds lor ageing research. The second area is working collaboralively to anable the approval and funding of new PWS drug8. . Establl•h Jolnt approach to promotlng and 8UPPOrtlng rosoarch. Through the new partnershlp wrth FPV4R UK the two organisailons (as PWS Slronger Togelher) ara worklng on plans lo promote and support research. This ha$ seen the organisations meeting with phamiaceulicals and developing plans lor PWS ctjnmunity updates webinars in clinical trials. 6. To •u8taln the charfty. - Dlver81fy Income 8tream8 and r•fre8h PWSA UK m•r¢handl8e offef. Fundraisin9 remained a challenge with the ongoing cost of living crlsis. Plans to diverslfy income are developlng and belng tested. The Associ81ion has seen some success wilh match funding. YrkIng wilh corporates and developing donor 9ivlng, Despite the challenging environment Ihe Association saw improved suexe8J with applications to trusts and loundation8. 23 grants were 8e¢ured (13 in 200314) lotalling £184K1£72K in 200314). A new range of merchandlse was developèd. Sourced. and launched. A PWS hidden di8abllity lanyard was also Soufced in response lo a specific request from the PWS adult group. . Imploment ongolng Impact mea•uras and annual Impact reportlng. The first PWSA UK Impact report was publlshed whlch demonslraled the diffarence made by the Association to the Pl+VS cofflmunily and how this was achieved. The report w85 based on 8n Independenl Oulcomes Evaluatk)n conducted by Insley Consulling Ltd, for which we consulted with 120 people Ihrough Surveys, focus groups and intervi8WS. - Board 8UCC•88lon planning. The boo undertook a skills audil whlch identified gap5 10 inform largeted recruitment. During Ihe year three new Irust88S were appointed to the board: Dr Evelien Ge¥ers, Consultanl Paediatrician and Reader In Endocrinology and Diabetes at Barts Health NHS Trust," Susan Passmore recently relired CEO of PWSA UK.. and Rosa Polaschek who has a younger brother wilh PWS and is a barrister wilh Doughty Slreel Chambers. Twstees have agreed plans for ongoing 8ucco$5ion planning lo ensure Gontinuity and maintaining an effecliv8 board. Page 3
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 ACHIEVEMENT AND PERFORMANCE Volunteering The Association has aKvays relled upon the commitment, goothvlll, kn¢)wledge, and 8XP8rience of its volunteers. We cufrentfy have 31 registered volunteers who Ofganise and support community events and facilitate parent to parent meetings onllne. The Association also lieS on the goodwill and support of inforrnal volunteers who rAlse funds, marshal at events. provide sp8ciali5t ski118 to the charity. serve as Truslees and mLKh more. We will always be grateful to our community and volunteérs - wlthout whom the charity simply would not be abl& to achieve what il does year on year. Income Generatlon PWSA UK is not only member-led but also depends on Ihe fundraising efforts of ils members for much of its fundlng. Ilfjthout this. th8 Associalion would be unable lo operate and conlinue to provlde ils vital services lo the PWS community. Th8 fundraising environment remalns Challenging wilh Ihe ongoing cost of livlng crisis and increased compelliion for trusts and foundation funding. We are hugely grateful to the following.. - Tower Bridge Intemational - £4.014.n - Muriel Jon88 Foundation - £25,Ot)O - The Ardwick Trust- £200 - (PWS Walkovers) - Inch Cape FourK18tion - £750 F B Coales- £1,000- (New Dlagnosisl - Alp Kll Foundalion - £175 - {Nene Park Walkover) - E¢¢lesiaslical Insurance Group - £1,(X)O Philip 8arnes & Co Lld - £1,500- IResearch) - P05tcode Places - £24,09) - (Volunteer Co Ordinalar) - Augustine Courtauld Trust- £1.500 - TSG Foundation - £10.OtXJ - (New Diagnosis) ' Steven Cooper Charflable Twst - £1,000 - The Oak Trust - £750 - Alp Kit Foundalion - £245- (Nene Park Walkover) Masonic Charilable Tru8t- £1.000 - The Vthitehead Moncklon Trust- £500- Hasting8 Walkover - The James Ellis Charitable Trust - £2.000 (Research) Children In Need 2024 - £10,000 - (Support) - Postcode Lottery - £70,OIX) D'oyly Carte Charllable Trust £3.160 - Dorset Community Weekend FINANCIAL REVIEW Flnanclal posltlon In Ihe financial year under revlew. the Asstxialion received in¢¢Jme of £497.574 (2023. £383.3831 and incurred expendlture of £501.101 (2023: £518,900) resulting in a deficit on operating actNitiès of £3,527 {2023'. dèficit £135.517). Income incregsed by 30Yo whilst expenditure decreased by 3rh* compared wilh 2022-23. Total funds as al 31 March 2024 sto¢)d at £430,273 (2023: £433,800) of which £63,618 (2023: £31,585) ar8 restrlcted funds. Of the remaining funds £116.003 (2023: £166.173) are designated lor specific projects. The general environment for srnall charities continues to be flnancially challenging and the Association's ablllly lo maintain a posftion of mid-term viats'lity remains k8y to maintaining our charitable services. Page 4
PRADER-LL1 SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 FINANCIAL REVIEW Prlnclpal fundlng Soue$ The principal adivilie5 of the Association have been funded from our re income. The Associalion has been heavily reliant upon Ihe efforts of our membership and others associated with the chaiity for Iheir lundraising efforts. Hover, the A8stxiation continues to be affected by the reduced levels of disposable income available lo support the tharitable sector arKI th8 continuing squeeze on our costs. Long term fIna[al sustainability remains a top priority and the Association continues to seek to divefsify incom8 sources. Invè81m•nt pollcy and obJectlve• The inveslment policy of the Association 1$ detemiined by the Tru31ee Board and enacted by the Chlef Executiv8 in o)nsullation with the Flnance Working Group. As of 31st March 2024, all rèservès were held in the bank deposbt account and n))ney market short term deFrf)sits. There are no inveslmenls in 8quilles, gifts, or bonds. Reserves pollcy 11 is the poIY of the Assoclation to mainlain a general resorve as well as a designated r8seNe lo support splfi¢ future ojects. The 'designaled" reserves al the end ol the financlal year were £116.003. The charity Trustees will review this ring the comlThJ financial year lo realign with a review of the plans, budgetary constraints and assessment of wiorities. Th8 Trustees have agreed thal Ihe unrestricled reserves should nol fall below six monlhs, operating costs. Th8 balance of the As8¢xiation's general re8erves at Ihe 31st of March 2024 18 £250,652 which represents 6 nM)nths of unreslrScled operating costs which Is in line with the targ6t sel by twstee3. P•n8lon Commltmonts The A8$0¢ialion OP8fate$ 8 defined conlributlon pension 8cheme for its staff. PWSA UK r8ached their staging date for aulomalic enrolmÈnl in March 2016 and as required all eligible slaff are enrolled into a quallfying pension scheme. Page 5
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 FUTURE PLANS Strateglc Objecllves for 2024 -5 Trustees conlinue to wort lowards the core slrateglc objectives of the Assoclation. For each of th8se several key areas of work have been agreed for Ihe year 2024- 25. 1. To be the leadlng knowledge and Infomiatlon hub for PWS. 1.1 Informatlon - Re¥iew of websile for medium to longer term development PWSA magazine to be sent out electronically. - Review of ¢ommunicati¢)n$ and engagement. Produce and distribule the 'PVIS Portion Size, booklet. - Produce and distribute 'consensus' besi practice guidance. Research inlonnalion requlremenls for adults with PWS. 1.2 Trnlning Inease and promote face to face and 'live' onllne tralning for those supporting paople Ilvlng with PWS. Review the online PWS Academy and dec4de on ils long-temi viability. Pilot and roll out Ihe BOSS (Build our S¢xial Skills) tralning for adutts with PV¥E. Increase delivery of Makaton tralning to support the PWS community. Research Oplions for accredited trainlng for professional care givers. 2. To provld• the b08t po8slbl0 8UPPOrt to the PWS communlty. - Dellver a diverse Fxogfam of community events and week8nds Ihat meet the needs of the PWS community. Pllol a revised approach to PWS conferen¢es Facilitate a parent-t(>pareni forum for parents of ageing adults wllh PWS. F8cllitate a parent-lo-parenl forurn for parents ol individuals for MUPD subtype of PWS. Continue lo develop and pilot slrategi8S to Improve standards in sIdential settings wllh a focu8 on training. 8upport and working with care provider8. 3. To be the volc• of tho•• affected by PWS. - Town Hall 8venl will be held every 6 month5 and other opportunities to engage and Ilsten to the Pllf6 community. Systematic gatherlng and review of trends and is$u&$ presenting to PWSA UK Increase engagemenl with adults with PWS through the 014VL group and adult conference. - Enable a wlder membership through increa8ed engagemenl and Increa88 numbers of registered members. Increase engagement with key stak8hold6rs and partner8 to increase lh6 influenc6 and Imp8d of PWSA UK 4. To develop and malntaln reglonal r•ach. - Undertake a mapping exercise on an annual ba81s lo asse88 changes to our reach and eng8g8ment. - Secure funding and appoint in-counlry PIfyE support workers for Northern Ireland and Scotland. Dellvary of EDI plans Increase Ihe number of activ8 volunteers to support lundraising, raising profile, outreach at cllni¢s, feedlng back on local service8, peer lo peer support and buddying, providing 8UPPOrt for local events and networking opportunilies. Increasing our attendance at PWIS clinic6 Ihrough rKrultment and tralning of volunleers. 5. To support and promoto r¢8•arch Into th• management and all•vlatlon of the ¢hallenge8 of Ilf• wlth PWS. - Deliver updates on PWS research for the communlty in parfnership with FPWR UK and IPINSO. Deliver a joint campawn wilh FPWR UK to raise additional furKls for ageing research. Promote opportunleS for partkipalion in research and clinl¢al trials - Establish fundlng rAiterlon for suNeys. revkws. and $tudie8. 8. To 8u$laln the charfty. 6.1 Governance Continue with succession planning for Ihe board and developlng a recrultsnent plan based on skills gaps. Ensure Ihal M&E Imoniloring and evaluation) and demonslraling impact ar8 embedded into PWSA UK, - Review of IT requirements with a focus ¢Jn CRM and cyber security. 6.2 Flnancial Management Diversify income through sales of our now mer¢handise range. promoling legacie5', developing opportunities for malch funding.. establishing joint fundraising for research with FPiIfft UK., creating relationships with corporates and pharmaceuticals.. focusing on regular and maior donors.. and increasing income from training and consultancy. Page 6
PRADER-WILU SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 6.3 Stafflng Review of core staff with the aim of reduclng fixed costs. - Review and update of staff handbook, staff polie$ and procedures. T&Cs and slaff employment contracts. - Review and refresh PWSA UK values and embed across the charrty. STRUCTURE. GOVERNANCE AND MANAGEMENT Governlng document The charity Is controlled by Its govemlng documenl. a deed of trusl and constitut88 an unincorporaled charity. Charlty constltutlon The Prader-willi Syndrome Assoaation UK (the A88txiatv)n) was lginallY registered as a charlty on 13 May 1982: Charity Numlxr 284583. In 2014 a new Chantable Incorporated Organisalion {CIO) was formed and registered with the Charity Comnissioners under Charity Number 115584S. The original Unincorporated Organisation Charity Number 2845&3 was then merged Snlo Ihe new CIO and all assets and Ilabilities transferred. Th8 original unincorporaled organisalion wa$ ITrn dosed and removed Irom the Charity Commissionerfs regisler. The CIO PWSA UK 08 controlled by its governlng document and its regislared address is in Northampton In UK. ganllatlonal structur• The Assoclalion is govemed by a Board of Tw8lee8 con81$ting of not les8 than four member8 of the A$sociation. These are elected by the membership for three years al the Annual General Meeting {AGM). At Ihe first meeling after the AGM, the Trustees ele frorn its number a Chalman and Treasurer who are known as the Honorary Officers of the Associalion, The Board dTIu81ees normally mee16 four tlmes a y8ar wlth one face lo face meeling in London. A new recrLti¢ment proce86 has been agréed by the Trustee8 to anjure thal Tw8teeg are Selected based on requlred skllls and eXIlienCe. As part of the ongoing review of 9ovemance the prevlou8 working groups were dosed and replaced by new sub-comittees whh better meet Ihe needs ol our operats'on8'. Finance and General Purposes Commlttee - Medicd Advisory and Research Committee Services, Informatlon and Training Committee FundralBing and Communications Cornmlllee The comrnltteas operale within agreed T8nn8 of Reference and make recommendation8 lo the Tntstee Board. The day-to-day managemenl of Ihe Assoclalion's activities are delegated to the Chief Execulive who reports on progres8 againsl plan$ agreèd by the board. The Association has a supervisory and appraisal system In place. All employees have deslgnated line manager WIK) directs and support8 Staff to fulfil Iheir own and the organisatlon's objectives which are conslstenl with the $lrateglc aims set by Ihe Trustee Board. Declaratlon of Int•r••t and Internal Control8 The Associalion has in place general decision-making and financial controls., the Chief Executive and all staff members are fully accountable to the Twstee Boaid and there are 881 levels of ffinanclal d818gation requiring Trustee approval. The Associallon has agreed a Declaralion of Interest statemenl that requires boa meeling participants to declare any pecuniary and non-pecuniary interest al the outsel of every Board meeting. Thls Is in additbn to the Register of Intere818 and transactions wllh relaled parties. annual declaration. Rlsk management The Trustee Board have agreed a ri8k management policy covering the principal areas of Governance, Operatlonal, Financial, Environrnental and External, Law and Regulalion. Truslee8 have developed a risk management register which identifies and assesses the likelihood and impact of organisational risks. Actions are agreed to fflitigale risks to help Trustees identify and focus on residual risks. The risk management p)licy and register are vieWed annually by the l)oard. The board reviews higher risk$ on a more frequent basis to help manage uncert8inty and to ensure delivery of objectives and the long-lerffl survival of the Association. Page 7
PRADER-WILLI SYNDROME ASSOCIATION UK CIO REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 REFERENCE AND ADMINISTRATIVE DETAILS Reg18tered Charlty number 1155846 Prlnclpal addre88 CIO Melcalf s Commercial Decorators Lld Unil 5. 3 Deer Park Road Moulton Pafk Irxlustrial Estate Northamplon NN3 6RX Tru8ts•• Royal Patron HRH The Pwincess Michael of Kent Patron Prof Tony Holland CBE Tru9t•e8 Ll Col Danny Leslie (Chairman) Matthew Christensen (Tffjasurer) Andrew Abbott Catherine Carey Dr Robin Chung Dr Evellen Gevern (November 2023) Anne Good Dr Anne Livesey lan Melcalf Susan Passmore (November 2023) Rosa Polaschek (November 2023) Karen Potts Slephanle Sokolowski Chl•f Ex•cutlve and Honor•ry S•erotary Jackie Lodge Independent Examln•r Johnson Tidsall Limited Chartered A¢counlanls 818urton Road Derby Derbyshire DE1 1TJ Bank•rn HSBC Bank PIC 1 St Peters Str8Ot Derby Derbyshire DE12AE Approved by order of the board ol truslees on ....19110r2024..................... and signed on its behalf by.. O Leslie - Tru$teo Page 8
INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF PRADER-WILLI SYNDROME ASSOCIATION UK CIO Independent examlnerfs report to the truslee9 01 Prader-wllll Syndrome Association UK CIO I report to the ¢harily truslee8 on my examination of the accounts of Prader-willi Syndrome Association UK CIO (the Trust) for the year ended 31 March 2024. Re$pon8lbilltla8 and ba$1$ of report As the charity tntstees of the Trust you ar8 SPOnsible for the preparation of the accounls in xcordance with the requirements of the Charities Act 2011 {Ihe Act). I report In respect of my 8xamination of the TN8fs accounts carried oul under Seclion 145 01 the Act and in camiing out my examinati I have followed all applicable Directions given by the Charity Commission under Section 145(5){bl of the Act. Independent oxam5nofs •tatement Since your charity's gross income exc8eded £250,OCQ your examiner musl be a member of a listed body. l Can confirm that I am qualified to undertake Ihe examinalion because l am a mèmber of the Inslitule of Charlered Accounlarrts in England and Wa188. which is one of Ihe li81ed bodies. I have Completed my examination. I confirm that no materlal matters have come to my attention In connectlon wlth the examinalion giving me cau88 to believe that in any material respe¢l- accounting records vlere not kept in respect of the Trust as required by Section 130 of th8 Act., or Ihe accounts do not accord with those records., or the accounts do not comply wilh the applicable requirements concerning the form and content of accounts set out in the Charities {Accounls and Reports) Regulations 2008 other than any requlr8ment that the ac¢ount8 give a true and fair view which is not a matter considered as part of an independent examination. I have no concérns and have come across rn other matters in connection with the examinatlon to whlch attentk)n should be drawn In this report in order to enable a proper underslanding of the accounts to be reached. David Mellor Johnson Tidsall Llmited Chartered Accountants 81 Burton Road Derby Derbyshire DE11TJ %*)Ivl¥oLf........ Page 9
PRADER-WILLI SYNDROME ASSOCIATION UK CIO STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 MARCH 2024 2024 Total funds 2023 Total funds Unrestricted funds Restricted funds Notes INCOME AND ENDOWMENTS FROM Donations and legacies 324,108 78,342 402,4SO 298.683 Charltable actlvlties Charitable activities 79,177 79,1TI 77,864 Olher trading activities Investment income 4,531 4,531 11.416 5,217 1,619 Total 419 232 383 383 EXPENDITURE ON Raising funds 12.083 1,716 13,798 11,738 Charltabl• actlvltle8 Charilable activrties 437 468 487 303 Total 501101 NET INCOMEI(EXPENDITURE) Tran$f•rn betwe•n lund8 (30,319) 28,792 17 13,527) (135.5171 Net mov•ment in fund• 135.661) 32,034 (3,527) {135,517) RECONCILIATION OF FUNDS Total fund8 broughl forward 402,215 31,585 433,800 569,317 TOTAL FUNDS CARRIED FORWARD 433,800 The notes form part of thes8 financlal stalements Page 10
PRADER-WILLI SYNDROME ASSOCIATION UK CIO BALANCE SHEEr 31 MARCH 2024 2024 Total funds 2023 Tolal lunds Unrestrfcted fund5 Restrictod funds Notes FIXED ASSETS Tangible assets 13 3,598 3,598 2,874 CURRENT ASSETS Stocks Debtors Cash at bank and in hand 14 15 4.186 9,853 4,186 9,853 421658 3,189 4,763 445,638 372.079 63,618 435,697 453,588 CREDITORS Amounts falling due within one year 18 (9,022) 19,0221 (22,882) NET CURRENT ASSETS 363 057 426 675 430.926 TOTAL ASSETS LESS CURRENT LIABILITIES 366.66S 63,618 430,273 433.800 NET ASSETS 366 635 433,800 FUNDS Unre$lricted funds Restricted funds 17 366,655 402,215 TOTAL FUNDS 430 273 The financial 6tstem•nts were approved by the Board of Truslee8 and authorlsed for issue on ,,.19110r2024................. and were Signed on it8 behalf by.. D Le81ie - Tnrntee I Chflitenw . Tn4l•e The notes form part of those financial statemen15 Page 11
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 STATUTORY INFORMATION Prader-lmlli Syndmme Asso¢ialion UK CIO 18 a charity, reglstered in England and Wales. The charity's registered charity number and business address can be found in the reference and administrative detalls of Ihe R8POrt of the TTUSte8s. ACCOUNTING POLICIES Ba818 of preparing the Ilnanclal statsments The finandal statements of the charity. which is a public benefit enlily under FRS 102. have been prepared In a¢cordance with the Charilles 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 Republlc of Ireland (FRS 102) {effectiV8 1 January 2019)., Fsnancial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland, and the Charities Act 2011. The financtal statements have b8en prepared under the hist1¢41 c081 convention. The currancy basi8 lor the pparatIon of these financial slatements 18 pound sterling (£). Goln9 con¢em The tru81ees regularly monitor the charity's reser¥es policy, risk assessment and ca8h to 88ses$ the viats'llty of the charlty. To date, no material uncertainlles exl$l that would 8ffect the weparation of the finanoal ststements on a going concern bas18. Slgnlfl¢#nt Judgements and e8tlmat•8 The following judgemenls (apart from those Invofving e81imales) have been made in the wo¢es8 of applying the charity's accounting policie8 that have had the mo61 signlfrAnt effect on amount8 recogni3ed in the financial statements.. Legacies - when Calculating amounts due on legacies. management considers the wllls of th• deceased, executor8 accounts, nolificalions received from &xo¢iJtor8 and consultelion wilh Solicitors. Total per financial stalements £35,&39. Grants - when lculatIng grant commitmenls, managèment considers the nature of grants a5 bein9 Within th• charity's objectives, their 8ntillemenl and the p068ible future beneffils foT people affected by PWS. In¢ome All income is recogni8ed in the Ststement of Financial A¢tlvltles once the charity has entitlement to Ihe funds, il Is probable th81 the Income will be recelved and Ihe amount can be measured reliably. Donated seNices and goods ar8 recognlsod as income when the charity has control over Ihem. the economic beneflt is probable and can measured 1labty. In &cordance with the Charitles SORP (FRS102), volunteer lime is not recognised. Inforynalion about Iheir contrlbulion 18 provlded In the Trustee8' Annual Report. For donations lo be recogni8ed the charlty will have baen notified of th8 amounts and Ihe settlement dale, If there are condltlons attached to the donalion and this requires a level of performance before entillemenl can be obtsined, then in¢m Is deferred unlil Ise conditlons are fulty met or the fulfilment of those conditions is within the control of the charity and1118 probabl8 Ihat they will be fulfilled. For legacies, entitlement Is the earfier of Ihe charity being notified of an Impending distribution or the legacy belng received. At this point income is re)gnised. Income from trading activilie8 includes incom8 eamed from fundraising events and Irading activllies to raise funds for the charity Income is recelved In exchange for supptying goods and services in Ofder to raise funds and is recognised when enlitlement has occu¥red. Investment income is oamed through holding a55els for investmenl purposes such as shares and bank deposit ac¢ounls It includes bank inlerest. It 1$ included vthen the amount can be measured reliably. Pag8 12
PRADER-WILU SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnuod FOR THE YEAR ENDED 31 MARCH 2024 ACCOUNTING POLICIES- conllnued Incom• Other deblors are recognised at the settlement amount due. Prepayments are valued at the amwnt prepaid. ExpdIlure Llabilities are recognised as expenditure as soon as there IB a legal or ¢on$tructive obligallon mMitt1ng the charlty lo thal expenditure. il is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured r81iably. Expendlture 16 accounled lor C an accru818 basis and has been Glassified under heading8 that aggregat8 all cosl related lo the category, here costs cannot be dlre¢tly attribuled to particular headings they have been allocated to activllies on a b881$ consistent with the us8 of resources. Irrecoverable VAT 18 charged as a cost against the activity for which the expendlture was incuffed. Credltof• Credilors are recogni8ed vthere the charlty has a present obligation resulting tr a past event that will probably result in the transfer of funds lo a thifd paty and the amount due to Settle th8 obligation Can be measured or estimated rellably. Creditols are recognised al their settlemenl amount. Tanglblo Ilxéd 48s0ts Depreciation is provlded al Ihe followlng annual rates in order lo write off each as8el over its estimated useful Ilfe. Fixtures and fitting8 25% on cost Tangible fixeil assels are staled at CO8t or deemed Costs le63 accumulated depreciation. Cost includes Costs directly attributable to making the agset capable ol operating &8 InleThSed. Stock8 Stock8 are valued at the lower of c06t and net r8ali8able value, after maklng due allowance lor obsolele and slow moving ilems. Stock Is valued on a first in first out ba815 IFIFOI. T•xatlon The charlty is exempt from tax on its charitable activities. Fund accountlng The chaTily has both restricted and unrestrtcted I)d$. All funds are used lo beneflt and promole its Charitable objects. Re8lrKted funds are those donatad for use in a particular area or for $peclflc purposes. the us• of whlch is festricled lo Ihat area or purpose and lh• re8lricllon means that th8 funds can only be used for Specif proJe¢l$ or aclivilies. 1Othen donors specify that donations and grants are for particular purposes whlch do not amount to pre-condition6 regarding entitlemenl, this income is included in incoming resources of restricted lunds when receivable, The relevant expendiluie is then matched as restricted expendlture. Unrestricted funds are general funds that are avallable fi>r use at the trustees, discretion in furtherance of any otyectives of the charity. Designated funds ar8 unstrICted lunds set aside at th8 dlscretion of the truslees lor speclfic purposes. Pen8lon costs and olher po8trntlrement benefits The charity opeiates a defined contnbution pension scheme. Contributs'ons payable lo Ihe charity's pension scheme are charged lo the Statement of Financial Activities in Ihe p8riod to which they relate. Oporallng leases Rentals applicable to operating leases vhlere substantialty all of the benefits and risks of ¢)wnership remain with the lessow are charged lo the SOFA on a straight Ine basi$ over the penod of the lease. Page 13
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 ACCOUNTING POLICIES- contlnued R•8•rv•s The charftable company mainlains a level of fe$erve$ required to fulfil its objectives. The trustee$ monitor reserves at regular meetings. Flnanclal In•truments Flnan¢ial instruments are classified and accounted for. according to lh8 substance of the contractual arrangement, as eilher financial assets. financial liabililies or equlty instruments. An equity instrument is any contract Ihat evidences sidual interest in thè a8sels of the Company after deducliThJ all of ils liabililies. DONATIONS AND LEGACIES 2024 2023 Donations Legacies 402,450 263,014 298 683 OTHER TRADING ACTIVITIE8 2024 2023 Promots'onal sales INVESTMENT INCOME 2024 2023 Deposit accwnt intere81 INCOME FROM CHARITA8LE ACTIVITIES 2024 2023 Adlvlly Confer•nce8 holiday8 & support Fundraislng event$ Charitable activilies Charitable acllvhies 20.965 16,437 79.177 Page 14
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 CHARITABLE ACTIVITIES COSTS Direct Cosls (see nole 8) Support cosls (see note 9) Totals Charitable activities 479 210 487 303 DIRECT COSTS OF CHARITABLE ACTIVITIES 2024 2023 Staff costs Insurance Telephone Postage and stationery Printing costs Bank charges Evenls Travel and accommodatlon Family vekend Staff Iraining IT costs Office machine maintenance Subscriptions Projects support Research 406,363 1.316 4,670 6,451 5,012 419 10,75S 8,158 342,905 1,276 5,670 7,088 5,262 402 25,794 10,134 1,473 1,265 12,481 4,591 2.846 51,465 3,150 16,495 4,757 2,738 3,061 479 210 SUPPORT COSTS Human resources GovemanGe costs Managament Othar Totals Chafitablo actlvities 254 Accountancy and legal fewd include £3.300 in respect of the Independent Examination fee. Support C08ts, included in the above, are as follows.. 2024 Charitable aclivitie$ 2023 Total actlvilles Trustees, expenses Sundries Depreciation ol langible fixed assets Loss on sale of langible fixed assels Accountancy and legal fees 1.197 254 2,536 2,345 477 1,908 142 Page 15
PRADER-WILU SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 10. TRUSTEES. REMUNERATION AND BENEFITS There were no truslees, remuneration or other b8n8frt$ lor the year ended 31 March 2024 nor for the year ended 31 March 2023. Tru8t••8' eXPeMaS 2024 2023 Trustees, expenses Tru$t•es' expenses relate to attendanc8 at meeting Costs. STAFF COSTS 2024 2023 Wages and salarie8 Social security costs Other pension cost8 369,892 30,499 303,786 27,265 342.905 The average monthly number ol employees durlng the year was as follow8.' Charilable activities Management and administratlon 2024 2023 10 No employees received emoluments In exce6$ of £60,000. Durlng the yeai one employee12023 one employee) recelved total employee benefit8 of rmre than £80.000. The key management pewsonnel of the charity comprise3 the Chlef Execullve Officer. The total employee benefits of the key managemenl personnel of the thaflty, includin9 employef$ penslon contributlons, amounted to £89.173 (2023. £77,603). 11 COMPARATNES FOR THE STATEMENT OF FINANCIAL ACTIVITIES Unrestrfcted lunds Restricted funds Total fund$ INCOME AND ENDOWMENTS FROM Donations and legacies 226,878 71.805 298,e83 Charltable actlvltle8 Charitable activitles 77,864 77,864 Other tradlng acllwlies Investment income 5.217 6,217 T¢)tal 311578 71,805 EXPENDITURE ON Raising funds 9,805 1,933 11,738 Page 16
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 12. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - contlnued Unrestricted funds Restricted funds Total funds Charltable actlvltlos Charitable activiti68 99,502 Totsl 101,435 NET INCOMeiiEXPENDITURE) Tran8fev8 tween funds (105.887) (29,630) 44) (135.517) Not movement In lund8 (105,843) {29.874) (135.5171 RECONCILIATION OF FUNDS Tolal funds brought fon•iard 508,058 61,259 569.317 TOTAL FUNDS CARRIED FORWARD 402 215 433.800 13. TANGIBLE FIXED ASSETS Flxtures and fittings COST At 1 Aprll 2023 Addilions 22,629 At 31 March 2024 DEPRECIATION At 1 April 2023 Charge for year 19,755 At 31 March 2024 NET BOOK VALUE At 31 March 2024 At 31 March 2023 Page 17
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 14. STOCKS 2024 2023 Finished go¢x15 15. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2024 2023 Trade debtors Other deblors Prepaymenls and accrued income 3,923 759 171 698 4.065 4,763 18. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2024 2023 Other credilorn Page 18
PRADER-WILU SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 17. MOVEMENT IN FUNDS Net movemenl in funds Transfer$ belween funds At 3113r24 At 114r23 Unre8tr1cted fiAnd8 Gen8ral fund Research Communications Manager Research: Ageing in PWS PWS Slblings projecl Residential Care Projecl Manager Stsff and Trustee Away Day Clinlc8 236,042 10,000 20,165 100,000 36,008 14,766 250.652 10,000 (20,165) 12,000 (36,008 10,000 3,000 98,000 17.782) 2,218 3.000 R•6trlcted funds R8search O.W,L Group Chlldren in Need Research - Phllip Bam8s & Co Ltd Famitynet Wales & Southwèst ICAP Alpkit Foundatlon Awards 4 All Toyota Ea81 Midlands Jeans 4 Genes Better Break8 Scolland 2023 Toyota Postcode Places Northem Ireland TSG Foundalion PWSA Funds- The Big Glve Campalgn The Whitehead Monckton Trusl D'oyly Carter Charitable Twsl 402,215 (30,318) 15,242) 366,655 2,195 3,760 10,000 12,1951 15511 12751 (5,3331 3.209 9,725 $,245 1,012 2,924 12,477) 447 8,478 1,292 1.836 15.3161 14941 11,836) 274 1795) 19,385 11,102 5.211 7,586 352 3,162 {798) 274 795 19,385 11,102 8,211 7,586 352 TOTAL FUNDS 430 273 Pag& 19
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 17. MOVEMENT IN FUNDS - contlnued Nel movement in funds. included in Ihe above are as follows: Incoming resources Resources expended Movement in fur)ds Unro6trlcted lunds Gen8ral fund Communications Manager Residential Care Project Manager Clinics 419,232 1419,388 (20,165) {7.782) (156) 120,165) 17,782) R•strlcled fvnds Research O.W.L Group Childr8n in Need Research - Philip Bames & Co Ltd Famllynel Wale8 & Southbvest ICAP Alpkil FLndatIon Award$ 4 All Toyota East Mldlands Jeans 4 Genes Better Break8 Scotland 2023 The dWiCk Trust FB Coales No 4 Toyota Postcode Places Thomson Roddl¢k Scottish Auctlons Northern Ireland TSG Foundalion PWSA FurKI8 - The Big Give Campalgn The Wh6tehead Monckton Tru81 D'oyly Cartèr Charltable Trust 419,232 (449.SS0) (30.318) (2,195) 1552) 110,275) (6,833) (1.012) {2,478) 141 S) {5,316) {4941 {1,836 (6,706) {200) (1,000) (796) (4.705) (1,761) 140) {4,790) <2,1951 15511 12751 IS,3331 11,0121 12,4771 10,000 1.800 420 15.316) 1494) 11,836) 274 6,980 200 1,000 1795) 19,385 24,090 1,761 11,142 10,001 7.586 500 11,102 5,211 7,688 352 (148) TOTAL FUNDS 497 674 501 1011 Page 20
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 17. MOVEMENT IN FUNDS- conllnuad Comparatlves for movement In fund8 Net movement in funds TnSferS befvieen fund6 At 3113123 At 114122 Unmlrfcted fund8 General fund Research Communicatlons Manager Research.. Ageing in PWS PWS Siblings projecl 280.878 19.956 57.224 100.¢YJO 50.000 {44,836) {10,OCK)) (37,059) 236,042 10,000 20,165 100.CQO 508,058 (105,887) 402,215 Re8trfct•d funds Research O.W.L Group Children in Need Research - Philip Bames & Co Ltd Research Rokety School Familynet evants Familynet Wales & Southwest Familynet Cheshire & Hertfordshire National Conference 2020 . Outsourclng activltles matnal Conference 2020 Familynet Essex CAF ICAP St James's Pla¢e Awards 4 All Toyola Easl Midlands Jeans 4 Genes 1,924 3,981 23 4,361 315 767 1,938 1,000 271 2.195 3,760 10,000 (221) 9,977 <4,273) (315) (767> (926) (1,000) 1.012 1,576 709 1,414 33,431 7,320 2.500 (1,576) (7119) (1,414) (33,431) (4,396) {2,500) 8,478 1,292 2,924 8,478 1.292 29.630 TOTAL FUNDS 569 317 135 517) Page 21
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 17. MOVEMENT IN FUNDS- contlnued Comparalive net movement in funds, included in the above are as follows.. Incoming resources Resources expended Movement in funds Unre8trlcted fund• General fund Research Communications Manager PWS Slblings projecl 311,578 (356,414) (10,000) (37,059) 13992) (44,836) (10,OCM)) (37,059) 13992> 311.578 Re8trfcted fund8 O.W.L Group Children in Need Hospital Saturday fijnd Resea - Philip Bames & Co Ltd Familyn&t events Famllyn8t Wales & Southwest Familynet Cheshire & Hertfordshire National Confeien¢e 2020- Outsourcing activities Natlonal Conference 2020 Familynel Essex Masonic Chantable Trust CAF ICAP A Clarf( Automoblles St James's Place Boshier Hlnlon Foundation Awards 4 All Toyota East Midlands Jeans 4 Genes (417,465) (105,887) (221) {10,023) (2,000) <5,773) (767) (926} (1,000) <221) 9.977 20,000 2.000 1,500 (4,273) (787) (926) (1.000) (1,576) (709) (1,414) (5,OCrf)) {69,518) (4,397) (1,000) 12,500> (2,000) 11,447) (1,576) <709) (1,414) 5,000 26,087 {33,431) (4,396) 1.000 12.500) 2.000 9,925 1,292 8.478 1,292 101.435 29,630 TOTAL FUNDS 383 383 135 $171 Deslgnated Funds a8 at 31 March 2024 Research - funding for research projects Research: Agelng in PWS - fijndlng for a Specific research projeGt Residential Care Project Manager Staff and Trustee Away Day Clinics Rg•trlctsd Fund8 a8 at 31 March 2024 OWL Group - 8UPPOrt for meetings and awayday8 Chlldren in Need- Funding for a member of Support Team Research Rokeby- funding for research projects Familynel 8venls - funding for family activilies Familynel Cheshire and Hertfordshlre- lundlng for family activities National Conference 2020- outsourcing acti¥ilies - funding for cre¢he faciltties Familynet Essex - fundin9 for family aclivilies CAF - funding for Support Team arKI online activili8S ICAP funding for family aclivlties A Clark Automobiles - PV*lS animation proj8Ct Page 22
PRADER-WILLI SYNDROME ASSOCIATION UK CIO NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 17. MOVEMENT IN FUNDS - ¢ontlnued St James's Place - lunding for animatlon videos Awards4 All . funding for diagnosis support Alpkit Foundats'on - for use for community event at Nene Park Better Breaks Scotland 2023 - for use in Scotland only. for communty eventslfamily weekends Posl¢ode Places - for a new post recruited in January 2024 - volunleer CO•ordinator who is taking a lead in all things volunteer related Northern Ireland - for work to be undertaken within Northem Ireland to reach the communty Ihere TSC Foundolion - this is towards a new diagn¢X8iS lead in the support teams salary PWSA Funds - The Big Give FOurallon . lo develop a resource fof the community on how best to control diet withln pws The llehead Monckton Trust - towards any costs relating to the PWS Walkover communty event taking part in Haslings in July 2024 D'oyly Carter Charitable Trust - to be used against any costs agaln8t the Dorsel Communily weèkénd taklng place in September 2024 Tran¥fer8 belween fund• Transfers represent alloCation between various research grants. EMPLOYEE BENEFIT OBLIGATIONS 18. Tho tolal contribution paid lo Personal Pension Plans in the year for certain employees amounled lo £15.962 {2023'. £11,854) 1•. RELATED PARTY DISCLOSURE8 There were no related paty transactlons lor Ihe year ended 31 March 2024. Page 23