Charity re8islralion number. 1152445 Wolfram Syndrome UK A Thnual Report and Financial Statements for the Year Ended 29 February 2024 Hodson & Co Wiston House I Wiston Avenue Worthing West Sussex BN14 7QL
Wolfram Syndrome UK Contents Reference and Administrattve Details Trustees, Report 2108 Statement of Trustees, Responsibilities Ind¢pend¢nl Examinels Report 10 Statemenr of Financial Adivities Balance Sheet 13 Notes to the Financial Sialements 141026
Wolfram Syndrome UK Reference and Administrative Details Chalrman Mr J Ishenvood Trustees MrANye ProfT Barr¢Él Mr P Lynch Mr J Ishenvood Miss A Gardner Senlor ManAgement l Leadershlp Mrs T Lynch, Chief Executive Tea Dr G Isherwood PhD, Conlracis Manager Charlty Registratlon Iyumber 1152445 The charity is incorporated in England and Wales. 9 Church Way Tdrrin¥ Worthing West Sussex BN13 IHD Reglstered Office Independent Examlner Hodson & Co Wislon House I Wislon Avenu¢ Worthing Wesl Sussex BN14 7QL Page I
Wolfram Syndrome UK Trustees, Report The Iruslees. wlio are directors for the purposes of coinpany law. present the annual report logcther with the rinancial statements of the charitable company for the year ended 29 February 2024. ObJe¢tlves and activhtles Obje¢'¢s aims WolfFam Syndrome IWS) Is a genetic disorder causing Diabetes Insipidug, Diabetes Mellilus, Oplic atrophy and deafi)ess. It affects children and adults and there is currently no knO,n cure. There are currently around I l O people diagnosed with WS in the UL This number is ri$ing and expected to reach 150 due lo itbL'reased genetic testing and improvement5 in the diagnosis of partial Wolfram. WSUK exists lo meet the needs of ih¢ WS community - the children, young peopl¢ and adulis affecred by WS and their families. Due to ihe rare and under-researched nature of this illness, diagnosis currently takes 3-6 monihs and involves several ihousand lesls. There is only one recognised ¢eiilrc of expenise foi. children, which is al Birmingham Children's Hospital. and for adults, at Queen Elizabeth Hospital Bimiingham. therefore, it is believed that many cases may not be recognised. WSUK raises funds to help finance fijrthcr rcsear¢h and through it5 ¢-new51ettcrs, wcbsitc and annual conference increase levels of awareness. knowledge and urtderstsnding of this illness. These a¢liviiies benefit not only lho.qe LUTTenily affected bul also those diagnosLd in the future and their families, not lea81 in su%taining an cnhanced nAtional focus on findin8 effectiv¢ treamienis and an eventtMI cure. For those cuentlY affeclcd and their families. WSUK maintains a voliinlary register and distributes inforniation about its aims, objectives and activities, WSUK provides direct and practical benofil through inforniation, on-goin8 front-line support. advice and guidance. Further pr8cti¢al and emotional benefit is provided by WSUK lo families living with WS in rhL fonn of an annual confer¢nce, activities I projeLls for spe¢ifi¢ mellibers of Ihe WS community (e.g., WS affected adults) and virtual or in person family I community meelmgs. As it is important for the WS community 10 h&ve opportunities to meet in beCen the 8nnu&l conferenees. WSUK aims lo provid¢ social ¢vcnts that enablc rnembcrs of the WS community build r¢laiionship8 and provid¢ peer support in & safe and welcoming space. This may include r¢gul8r on-line sessions for small groups, and l or in person events or family days at venues around the country. It is intended that WSUK in person events are organised at little or no co.st for fainilies and individuals to help maximise participation. In addition, WSUK will aim lo organi5e "take & break" opportunities for parents and carer$ 8t an affordable cost. For the benefit of current and fvture WS affected people the level of awareness. debate and research among the public and within the professional community of medical practitioners is raised through a number of di8semiiiation activities organiscd through WSUK. From the professional fnrums initially organised ai the Binningham clinic, WSUK will b¢ able to identify poleniially valuable re$¢ar¢h opporNnilies that it Can 5UPPOrt through its family network und financially. The WSUK website is also used to further di55eminaie research resu118 and publications. Ail of thcse activitics arc aimed at b¢nefiting all of Ihc families regi5t¢rcd with WSUK without any rth¢r restri¢tion and regardless of tlieir ability lo contribute financially. At Ibe discretion of the Iruslee's, financl suppori will be provided whLre poverly is a baler lu benefil. There will be no private benefils lo anyone from WSUK oihcr than a+ a ben¢fi¢iary of its statcd aims and activilics. No d¢trimeni or barm will arise fmm Larrying out any of the aims, objectives or aLlivities of WSUL(. Pmbllc benefil The ttustees have refeed to the guidance contained in the Charity Commi8ison's general guidance on publi¢ benefit when reviewing the chai'ftty's aims and objectives and in planning tUre activities. Page 2
Wolfram Syndrome UK Trustees, Report The trustees confinn that they Iiave complied with the requirem¢nls of section 17 of the Charities Act 2011 to have due regard lo the public benefit guidance published by the Charity Commission for England And Wales. Achievement5 and performance WS Community Support During 202312024, WSUK conlinued tu provid¢ expert support activilies and servi¥es lo the WS covnmunily. spCclCa1IY Ihrough thc following.. _ l. Contract with Birniingham Women's and Children's NHS Foundation Trusi (BWC NHSFT) lo support the WS ¢linic services for ¢hildr¢n and young people. In October 2023. WSUK Successfully cornpleled the first year of its contract with B WC NHSFT lo support the WS Mulii-Disciplinary Team (MDT) clinic services, part of the NHS England Highly Specialised Service. provided lo affect¢d Children and young people, and their parent carers and wider family members. Ai the end of YI (i.e. Ocl 2023). the WSUK Family Support Co-ordinator (FSC) was eitlier supporting or was actively engaged with the majority {760/0) of young people and their families and had delivered or was actively delivering a total of 80 sUPPOrt iysues (e.g. supporting Education. Health and Care Plan (EHCP) applications or providing cmotional support lo parents). Durirtg YI, 6 faiiiilic5 ceIVed a home vi51t from the FSC. By Oct 2023, the FSC had also successfully supported the four WS MDT clinics ai BCH, whi¢h were att¢ndcd by a total of 20 children / young people in person and 3 vimi2lly (23 total; 9 of whom were new referrals) and their parent carei'4. One imponant metric for the B WC NFISFT team And NHS %takeholders 15 the number of families who do not attend clinic as expected {i.e., "Did Not Attends": DNAS) and aim for the service to achieve the minimal number of DNAS as possible. As all families attended each of th¢ WS MDT clinics during 2023 as expeclcd, the number of DNAS was zero - a very posltive Bchieveinent. Sorne of WSUK'S on-80ing a¢livitie8 conducied 10 8UPPOrt or infom the WS cornmunity, ¢ontinue to forni part of the new contract B WC NHSFT, namely - i) Annual Conference, ii) managing the WSUK database, iii) WSUK website and iv) quarterly F.-Ncwslcit¢rs. In September 2023, WSUK held a face-io-face UK Annual Conference ai a new venue which Catered for mony of our cominuniiie8 needs. The UK C.onferencc provided the opportunity for memherg nf the WS communily t() cortnt with cach oth¢r in pcrson and cngage wilh WS health profcssionals in a non-clinic sctting. Prcscnlalions both were recorded and uploaded onlo the WSUK website, to enable those who were either unybl¢ to attend or part of the ex-UK global community lo hear the latest updates from WSUK. researchers and representatives from othcr rclevant organisalions (liltps.'l/woiframsyndromc.co.Uws-confcrcneC}. As part of Ihc confcrcnco. two first aid workshops were held tor a total of 24 attendees to learn Basic Firsl Aid skills. These proved popular and will be considered for future events. Throughoyt the year. WSUK has continued to regularly update the charity websile (https.'//wolframsyndrome.co.uL9 to ensure that it provides the WS community wiih a¢curale, current and family-friendly inforniation on Ws-related issues. which 15 medically endorsed. In &ddiliun, WSUK has continued 10 deliver qltarterly e-newsl¢tters to all those in the WS community and its supporters who elect lo receive regular updates. Each newyletter in¢ludes information on a range of tOPlC5 for example, updale5 on the lalesi res¢ar¢h. includtng the TREATW01fryj clinical trial. Each n¢w51etter 15 distributed by email. uploaded on the WSUK website. and shared via WSUK social media. To help ensure the tsnewsletter is as accessible as possible, visually impaid (Vl) members who use a screen reader receive a text alternative tsr any included images. In addition, an audio version 15 made available through the WSUK website and social media accounts. and a large font printed copy 18 Posted to a small number of members, where specifically requested. Page 3
Wolfram Syndrome UK Trusteesl Report 2. Enhanced support for WS affected adults, During 202312024, the WSUK Adult Support Co-ordinator (ASC) continued lo engage with the WS affeCd aduli communily to provide enhanced support ihrough activities such as.. . i. Attendance at tbc WS Adult MDT clinics 4t Queen Elizabcih Hospilal (QEH). By Feb 2024, the ASC had atlended a tolal of 4 WS MDT clinics at QEH (80% of S clinics held) lo meei WS ff¢clcd adults and th¢ir fdmily rnefflb¢r in person and belttr UDdcrsland their 4ilu81ion. currcnl challLD¥e,8 Éind support needs. Through attending thcse ¢linirs in pcrson, the ASC alsu has built strong, positiv¢ r¢lationships with the adult clinic lead and oiher members of the MDT team. ii. The Emotional Wellbeing (FWB) prL)j¢Li for WS affeLled adults. In Nov 2023, WSUK completed the EWB proj¢¢t. which was designed lo help empower WS affected adults to improve their emotional wellbeing And funded through a syrant r¢¢eived from the National Lottery Community Fund. As part of this project, the ASC held personalised l.. I monthly support sessions wiih 13 WS Affected adults, and 4 adults have continued with these sessions beyond the end of the project. In addition, the ASC held interactive peer wellbein8 SUPPOrt sessions lo provide a safe and welcoming space for WS affected adulis lo connect and help each other. Wellbeing resources. on different aspects of w'ellbeing from a range of recognised 50urce8, have also been made available on WSUK website for everyone in the WS community {https:Ilivolframsyndrome.co.uklour-proje¢tsfj. iii. On-going tront-line support In addition to the WS MDT ¢linics and EWB projeci. the ASC has supported WS affected adults and their families with a range of other issues such as oecessing adLIII social Care, housing adaptation5 and attending MDT rneelirL¥s on EHCPslfurthcr education. By Feb 2024, thc ASC had conducted 6 liom¢ visits 10 help supporl WS affeclcd adu115, wliich included for examplc. a n¢wly dia¥noscd family, a fainily willi liousing adapialion ne¢ds and supportin8 2 young adults with their Lnenlal health. Through all these activities. the ASC bas successfully cslablished slrong and trusted relationships with many WS iiffected adults and has started building connections within Ihe adult cojnniunity for peer-lo-peer support. There is a clear need for ¢ontinu¢d on-going support And therefore WSUK intends lo devclop new a¢tivilic5 during 2024125 to further engage and help the WS adult community. Page 4
Wolfram Syndrome UK Trustees, Report Research I. TREATWolfram Clinical trial A total of 63 children, youn8 people and adults have been recruited 10 the TREA Twolfram clinical trial across the UK and at three other international sites. WSUK has previously provided funds lo this trial to help support patient visit ¢osts for UK participants. The first young people who were recTuiied at Bimiingham Cliildren's Hospital. have now completed iheir last patieni visits, while the final patients recruited will complete tlieir last visits iii O¢tober 2024. The final WSUK pa)ryncnt lo support TREATWolfram was originally deferred following patient reClIMent delays due to the COVID pandemic. During 2022123. the trial lead confm¢d Ihal addilional funds would not be Tequired for the r¢m8ind¢r of the study and in addition, iiny burplus fvnds would be rebjrned to WSUK once final payments had been made. A8 such, both the final panent and any surplus will retnain r¥$lricled funds and will be allocated to h¢lp suppon fiJtur¢ clinical trials ionductcd in the UK or other rcsearch acliviiies. 2. WSUK Scientific Advisory Board In February 2024, the WSUK Scientifi¢ Advisory Board (SAB) mel to discuss the researoh proposals received for the small grant fundin¥ of £15,000. A deLision was made lo award these fund5 10 & earLh projecl in Bimiingham Ihai hAd some links lo the TREATWolfram project. The fvnd5 will bc rcl¢as¢d in the ncxt financial year li.e. 202412025) due ia the timing of thc SAB decision in February 2024. 3 WS International Research Symposium In April 2023. WSUK co-hosted the 8th WS Iniernational Rcsearchers Syniposium in Surrey. 30 researchers aiid Phama representatives from around the world spent 2 days discussing their current research projccts &nd clinic trials. The pro8ramrne wa8 8pe¢ifically designed to give participanis lime to hear the prescnlations, ask queslions and chal with other researchers infornially betwecn s¢ssions, and ha5 resulted in some new ¢ollaboraiions bettve¢n global res¢ar¢h t¢&ms. The SylnPOSlLim ended wilh oll participants collaborating on a CURE4WOLFRAM Action Plan, wljich will be di5CU55ed at Ihe next symposium planned for late 2024 the Page 5
Wolfram Syndrome UK Trustees, Report Fundraising Consistcnl with previous years, fundraising activities were conducied throughout the year by the WSUK team. Ihe WS commwiity and its supporters. Specific examples include, but are not limiled to.. - Monthly donations - Members of the WS community and WSUK supporters continued with Iheir regular monthly donations, which were gatlY received and hugely appreciated. ii. Local fundraising events by WSUK supporters- Examples include: . a local recruitment company hosted 2 charity football matches during the year. WSUK attended each event 10 5UPPOrt the players, raise the awareness of WS and highlight how their donations help this community. iii. Community donations- Throughout the year, fflembe of the WS community completed tiindraisirtg activities or made donations lo help qupport the charity. iv. Allnual Golf Day event- The Ioih WSUK Annual Golf Day was held in July 2023. The pL1¢1paI1ng teams, many of whom have been involved in previous events, raised a record amouni for the ¢harity. v. Sale ol'UK branded items - Similar with pi'evious years, items such as Christmas cards, water bottles and pcn5 were sold through both the WSUK website and social media accounts, conference and at eharity fundrdising events, vi. 80,% night- In April 2023, WSUK held ils popular 80's night, which wus wcll Attcnd¢d as always. WSUK thanks evcryone in the WS Community and its support¢r5 for their coniinued support in helping the charity lo raise fid5 lo deliver ils important work. WS Global Awareness Day I st October The third WS Global Awaff ness Day took pla¢¢ on October I sl 2023, which fell the day after the annual conlerence, WS related information was distributed 10 global organisations to help raise their awareness of the condition. WSUK intei)ds to hold ihe founh WS Global Awareness Day on I sl Oelober 2024. Flnonclal revleiv Total incoming resources for the year were £136.399 (2023: £108,116) with expenditure of £113,865 (2023: £64.911). Overall, there was a surplus for th¢ y¢ar of £22,534 (2023.. £43,205). Unrcslrictcd funds at the year-end were £37,569 (2023.. £31,937) and the restricted fundy were £93,457 (2023.. £76,555). Total funds for the year were £131,026 (2023.. £108,492). Page 6
Wolfram Syndrome UK Trustees, Report Policy on reserves The trustees have examined the charlty's requirements for reseTYes in light of Ihe main risks to the OTganisalion. The Irustccs consider that the present l¢v¢l of funding will bc adcquale to support thc continuation of ihc charily and for it to fulfil its obligations. Jiives¢menlpoliLy and objeclives The objects of the company authorises it to invest and deal with moneys not immediately required for its purposes in and upon such investments securities and property as may be thought fit. GolDg concern The charity has reviewed it's fLnancial perforniance and general reserves position. The charity has adequate financial resourLeq and is able lo manage il's business risks. The charity's planning process has taken inio consideration th¢ ¢uffent economic climate and its potential impact on the various sources of income and planned expenditure, Taking into account all fa¢tors the charity has reasonable expectation that it has adequate resources lo Continue in operational existence for the foreseeable future and believe that theie are no material uncertainties that call into the charity's ability tn continue in operation. Accordingly, (he accounts liave been prepared on the basis that the charity is a going eoncem. Stru¢turei govern*n¢e and mAnagem¢nt alure ofgovernlng documenl Wolfram S)drOM¢ UK is a Cl)ariiable Incorporaicd Organisaiion regisleicd on 17 Junc 2013 with the Charity Coimmission of England and Wales (no. 1152445). The Lharity's working n8me is WSUK. Trustees MrANy¢ Prof T Barrett Mr P Lynch Mr J15herwood Mis5 A Gardner Mr N Mistry (resigned 4 June 2024) Recrultmenl 4nd appolnthienl oftrustees The Board has the power lo appoint additional trustees as it considers fit to do so. None of the trustees hAs any beneficial interest in the charity. Page 7
Wolfram Syndrome UK Trustees, Report Ind4¢tion and troifting of trustees Potential trustees are Selected on the basis of iheir personal qualilies and Ibe complex issues involved. A sp¢ciality Itnking to charity need5 is also sought. New iruslces are made familiar with the eharity vision, operation and goals by dialogue with existing personnel and provision of minutes and other literatur¢ pertaining to charity activity. AII tNstees are already familiar with the practical work of the charity. New tSteeS are encouraged lo atteiid all manageinent ¢omtnittee meeiings. Short training sessions (if required) lo familiarise new trustees with th¢ charity and th¢ context within which il operates are provided. Organi.Faftonal struclure The charity is or8&ni5ed so that the trustees meet regularly to manage its affairs. The trustee8 meet at least quarterly with additional meetings as required. The charity is overs¢en by the trustees, supported by volunteers. The organisalion operates in Ihe UK from premises in Church Road, Worthing, Kcy strategic and adminislralive decisions are made by agrcement of ihc tTuslees. and dclcgatcd as appropriate. Day to day management of the charity is delegated lo the Chief Executive, Mts Tracy Lynch. Flnanclal Instruments Objecrlves andpolleles The Lharity only has fancial assets and fmancial liabilities of a kind that qualify as basi¢ financial instruments. Basic financial instruments are initially recognised ai transaction value and subsequently measured at their settlement value with th¢ exception of bank loans which are subsequently measured at amortised cost usin8 the effective interest method. The annual report was approved by the trustees of th¢ charity on ,(s/i,i/?,4.. and si8ned on its behalf by.. Mr J Isherwood Chainnan and trustee Page 8
Wolfram Syndrome UK Statement of Trustees, Responsibilities The It51¢¢$ are responsible for preparing tlie in]slees' report and the financial statements in accordance with applicabla law and United Kingdom A¢¢ouDtin8 Standards (United Kingdom Generally Ac¢epted Aceounling Practice). Cliarily SORP requires th¢ tnisiees io prepare financial statements for each financial year. The tru51ee,s must not approve Ihe financial statements unless they are satisfied that ¢hcy give a truc and fair view of the ¢harity and of the incoming resources and application of resources, including its in¢oni¢ and expenditur¢, of the charity for that period. In preparing these financial statements, Ihe trustees are required to.. 5¢1ecl suitable accounting policies and apply Iliem consislenily. observe the methods and principles in the Charities SORP: m4k¢ judgcmcnts and cslimales that are rcason&blc and prudcnt: statc whether applicable Bccounting slandards have been followed, subject lo any material departures disclosed and explained in the finaneial statements. and prepAre the financial statemenrs on the going concern basis unless it is inplppropriale to presurne that the ¢harity will continue in business. The trustees are responsible for keeping accounting records that disclose with rcasonable accurdcy at any time the financial position of the ¢harily. They are also rcsponsible for safeguarding the &sscts of thc charity and hence for rakin8 reasonable s*PS for the prevention and deteclion of fraud and otlier irregularities. Approved by the Iruslees of the charity on .i.f/,I i /hf and signed on its bchalf by: Mr J18henvood Chaim)an ond tiustee Page 9
Wolfram Syndrome UK Independent Examiner's Report to the trustees of Wolfram Syndrome UK I report to the charity trustees on my examinaiioii of th¢ accounts of tlie Chariry for th¢ year ended 29 February 2024. ResponsAbilltle$ 4nd ba515 of report As the charity's tNStees you are responsible for thc prcparalion of the accounts. Th¢ cbarily's trustees consider that an audit 1% not required for this year under section 144 of the Charities Act 201 l ("the Charities Ac¢") and that an idependenl examination is needed. Having satisfied myself that the charity is not subject to audit under company law and is eligible for independent examination, it is my responsibility to., examine the accounts under section 145 of the Charities Acl, io follow the procedurcs laid down in the general Directions given by th¢ Charity Commission (under section 145(5)(bl of th¢ Charities Act), and • lo slate whether paff icular matters have come lo my attention. Bisls of Independent examlner's statement My cxaminiltion was carried out in accordanc¢ wilh gen¢i71 Dirc¢lion$ given by the Charity Commission. An ¢Xiuninalion includes a r¢view vf Ihc counting records kept by the charity and a cun)pari50n of the accounts presented with Ih05e records. li also includes consider81ion of any unusual itcm5 or dis¢10sures in the accounts, and s¢ekin8 cxplanalions froiii th¢ trJsiee8 concerning any such niatters, Tlye pro¢edur¢s undertaken do not provide all the evidence that would be requircd in an audit, and consequently no opinion is giv¢n as to wheiher the a¢count5 present a 'true and fair. view and the report is limited to those matters Sel out in Ihe atement below. Independent examiner's statement In conne¢tion witb my examination, no material matters have come io my attention which 8ives me cause to believe that in, any material rcspecl.. the accounting re¢ords were not kept in accordance with section 130 of the Lharilies Act; or the accounl.s did nor accord with the accounting records: or the accounts did not comply with the applicable requireinents Concerning the forn) and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 oiher than any requirement that Ihe accounts give a "true and fair" view which is not a matt¢r considered as part of an independent examinaiion. have come across no other matters in connection with the examination lo which allenlion Should be drawn in this report in order to enable a proper understandin8 of the accounts to be a¢hed. Matthew Hodson FCA Independent Ex&tnin¢r Wision House I Wi51on Avenue Worihing Wesl Sussex BN14 7QL Page 10
Wolfram Syndrome UK Statement of Financial Activities for the Year Ended 29 February 2024 (Including Income and ExpendRture Account and Statement of Total Recognised Gains and Losses) Total 2024 Unrestrlcted Re5trieted Note Income and Endoivm¢nt$ from: Donations and legacies Otlier trading activities Investment income 15,108 45,737 500 24,392 50.662 39,500 96,399 500 Total Lncome 136399 Expendlture on: Raising fvnds Charitable activities (48,478) 4,737 (48.478} 65,387 60,650 Total Expenditure Net income Transf¢rs belween funds 53,215 60.650 (113,865 8,130 2,5th) 14,404 22,534 Net rnovemenl in funds 5,630 16,904 22,534 Re¢oTrelllatloTr of tsnds Total fimds brought fonvard 31,939 76553 108,492 Total fund8 carried forward 18 93.457 131026 The nolas on pages 14 to 26 forn] an integral part of these financial statements. Page 11
Wolfram Syndrome UK Statement of Financlal Activities for the Year Ended 29 February 2024 (Including Income and Expenditure Account and Statement of Total Recognised Gains and Losses) Total 2023 Unrestricted Restrlcted Note Income 4Dd Endowments from: Donaliollg and legacies Other trading activities Investment income 28.658 20,895 19 4.819 53.725 33.477 74.620 19 Total Incom¢ 108.116 Exp¢ndlture on: Raising funds Charitable activities (25,335) 9,979 (25.335) 39,576 29,597 Total Expenditure Net income 29,597 64,911 Nct movement in funds 14,258 28,947 43,205 Reconclllatlon of funds Total funds brou8h¢ forward Totul thds Carried forward 17,679 47.608 65,287 18 108.492 All of the charily's aclivilie8 derive from continuing operation% during the above two p¢riods. The funds breakdowm for 2023 is shown in note 18. The not¢5 On pa8es 14 to 26 forni an integral pan of these financial statements. Page 12
Wolfram Syndrome UK Balance Sheet as at 29 February 2024 2024 2023 Note Flxed #5set5 Tangible assets 14 241 147 Current assets Stoeks Debtors Cash at bank and in hand 15 16 425 1.] io l31.816 837 671 108,066 133.351 109,574 Credltors: Amounts falllng due withln one year 17 (2,566 1,229 Net (urrent asse1$ 130 785 108 345 Net Assets 131026 108.492 Funds of the ¢harlty: Re$trlcted Income funds Rcstrictcd funds 18 93,457 76,553 Unrestrleted Income fund$ Unrestricted ndS 37,569 3l,939 Total fund5 19 131026 108 492 The fi ancial 8ts1em¢nts on pages 11 10 26 were approved by the ITusie¢s, and auihorised for issue on .£F and signed on Iheir b¢haif by: Mr J l%herwood Chaiman and Trust¢¢ The notes on pages 14 to 26 forni an integral part of these financial slatemenl& Pagc 13
Wolfram Syndrome UK Notes to the Financlal Statements for the Year Ended 29 February 2024 I Charlty status The charity 15 a Charitable Incorporated Or8anisa170n (CTO) and conseqiiently does not have share c2Pltal. The address of its ie8i5t¢red office is.. 9 Church Way Tarring Worthin¥ West Susscx BN13 IHD 2 Accounling pollcles Summary of slgnltl¢&nt aecountlng pollcle5 and key accountlng estim8te$ The principal accounting polici¢s applied in th¢ preparation ot'ihese financial ststemenls are sel out below. These policies have b¢en ¢onsist¢ntly applied to all the years presented, unless oth¢rwi5e slated. Statement of eompliAThce The financial .%lalemenls have been prepared in accordance wilh Accounting 8nd Reporting by Charities., Stalenienl ol'Recommended PraLlice (applicable lo charitics preparing their accounts in accordance with the Financial Reporting Standard applicablc in the UK and R¢publi¢ of Ircland (FRS 102)) (issued in Octobcr 2019) - {Chariti¢s SORP {FRS 102)). the Financial R¢poning Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Aci 2006. Basis of prepAratlon Asseis and liabilities 8re initially r¢co8nised ai historical cost or transaction valiie unless oiheDvise siaied in Ihe relevant accouniin¥ policy noles. The financial statements ar¢ prepared in 81crling, which is Ihc nctiOnal currency of the entity. GolAg ¢oncern Thc Iruslecs consider that there are no material uncertainties about Ihc charity's ability lo continue as a going concem nor any significant areas of uncertainty that affccl ihe carying valuc of a55Llts hcld by Il)e charity. Income find endoivment$ All income is COgnised once Ihc charity has entitlement to the income, it is probable that the income will be received and rhe amount of the income receivable can be measured reliably. Donadolls and legacies Donaiions a recognised when the charity has been notified in writin8 of both the amount and settlement date. In the ev¢nt that a donation is subject lo conditions Ihal require a level of perfomiance by the charity b¢forc thc ¢hariiy is entiiled to the funds, the income is deferred and not recogntsed until cither those conditions arc fully met, or the fulfilmenl of those ¢onditions is wholly within ihc control of the charity and it is probable that these coiidilions will be fulfilled lll the r¢portiD¥ period. Page 14
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 Grants receivable Grants a reCOlSed when ihe charity has an eniitlement 10 the funds and any Conditions linked to th¢ grants hav¢ been mel, Whcrc pcrforniance conditions are attached to the grant and ar¢ yet to be inet, Ihe income 15 Tecogntsed a6 a liability and included on the balance sheet as deferred income to be released. Investment IhL'ome Dividends are recognised onL¢ the dividend has been declared and notification has be¢n received of tbe dividend due. Expendllure All Cxpenditure is recognised once there Is a legal or constructive obligation to thai expenditure. tt is probable settlement is required and the amount Lan be measured rcliably. All costs are allocated to the applicable ¢Apendilure her4ding that aggregate siinilar costs to that category. Where costs cannot be directly attributed to parti¢ular headings they have been allocated on a basis which is reasonable, justifiable and consistanL Ralsiiigfvnds These are cosis incurred in attracting voluntsry income, the management of investinenls and ihose incurred in trading a¢iivities that raise funds. Charitable aeilvllles Charitable expenditure comprises those costs incurred by the charity in th¢ delivery of its aclivilie5 and service5 for ils beneficiaries. 11 in¢lude5 both costs that can be allocated dire¢ily lo such activities and ihose costs of an indirect nature n¢¢¢ssary lo support them. Support costs Support Costs include c¢ntrol functions and have been allocated 10 activity cost categorie5 011 a basis consislcnt with the use of resources, for ex&mple, allocating propety costs by floor area$, or per cApila, siaff ¢osls by the lime spent and other costs by their usase. Governance costs These include the costs allributable to the charity's Compli¢¢ with conslilulional and slatulory r¢quiremenls, includin8 audit. slralegic manag¢ment and tnL81¢es mectings and r¢imbur5cd exp¢n5CS. Taxation The charity is ¢on$ider¢d to pa$s the tests set out in Paragraph I Schedule 6 of the Finance Act 2010 and therefore it meets the definition of 8 charitable company for UK corporation lax purposes. Accordingly, the charity is potentially exempt fn)m iaxation in re5pe¢l of income or capital gains received within calegories covered by Chapter 3 Part I l of ihe Cory)oration Tax Act 2010 or Section 256 of the Taxation ot Chargeable Gain5 A¢1 1992, to the exi¢nl that such income or gains arc applied exclusively to charitable PUTPOSCS. Tftngible flxed assets Individual fixed assets are tnilially recorded al cost, less any subsequent accumulated deprecialion and subsequent accumiilaled impaimient losses. Depreelatlon and amorti$ation Depreciation is provided on tangible fixed assets so as to write off the ¢osi or valuation, less any eslimaled re%idual value, over their expected useful econoinie life a.% follows.. Page 15
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 Asset elAs5 Plant and machiaery Office equipment Depreciation method Ind rate over 4 years bettveen 2 and 5 years Impairment of fixed xsset$ A review for indicators of impairnient is carried out at each reporting date, with ihe recoverable amount bein8 estimated where such indicators exist. Where the carrying value exceeds the recoverable amount, rhe asset is impaired accordingly. Prior impaim?ents are also reviewed for possible reversal at each reporting date. Rese&rch and development Research and development expenditure is wriiten off as incurred. Stoek Stock is valued at the lower of cost and e.qlimated sellin8 price les5 CO518 to complete and sell, after due regard for obsolcte and slow moving stkS, Cost is deterniined using the first-in. rSt-out (FIFO), Cash and cash equfivalents Cash and cash equivalents comprise cash on hand and call deposits, and other short-tenn highly liquid investments that are readily convertible lo a known amount of cash and are subject lo an insignificant risk of change in value. TrAde credltors Trade Credito are obligations 10 pay for goods or services that have been acquired in the ordinary course of busincss from suppliers. Accounts payablc are classified as current liabilities if the charity does not have an un¢ondilional right, al the end of Ihc reporting period, lo defer settlement of the creditor for ai least twelvc rnonihs after the reporting date. If tl)ere is an unconditional right to defer Settlement for at leasi nvelve months after tiie r¢portln8 daic, Iliey are presented as non-current liabililics. Trade creditors are recognised initially at the Iransaciion price and subsequenily ineasured at amortised cost using the effective iijleresl method. Fund structure Unr¢$lricied income funds are general funds that are available for use al the trusiees diycrelion in furtheruiice of Ibe objectives of the charity. Designated funds are unrestricted fvnds earniarked by the trustees for particular fiJtur¢ project or commitment. Restricted income funds are ihose donated for use in a particular are& or for specific purposes, the use of which is restricted to that area or purpose. Flnanelal Instruments Classification The Charity only has financ7al assets and li8biliies of a kind that qualify as basic financial instruments. Basi¢ financial instruments are initially recognised ai transaction value and subsequently In¢asured al Iheir settletnenl value with the exception of bank loans which are subsequently meayured al amortised cost iising the eff¢¢tiv¢ interest method. Page 16
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 3 Income from donAtlon$ and legacles Unrestrlcted funds General Re$trlcted funds Tolal 2024 Tot41 2023 Donations and legacies.. Donations from individuals Grants, includin8 capital Branls. Grants from oiher charities Regular giving and capiial donations 9.202 16,215 25,417 27,730 2,047 8,177 10,224 5.246 3,859 3,859 501 33,477 4 Jncome from other trAdlng a¢dvRde$ Unr¢strlcted lunds General Restrlcted funds Total funds Total 2023 Tradirn8 income: Sales of goods and services Other trading in¢ume Events income. Other evenls incvme 279 279 50,662 330 48,400 50,662 45,458 45.458 25,1190 50,662 Page 17
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 5 Investment Income Unrestricted funds General Tot81 2024 Tot81 2023 Inteiest receivable and similar income; Interest receivable on bank deposits 500 500 19 6 Expenditure on raising funds ) Costs of generatlng doDatlon$ and legAele8 Unrestrlcted funds Gener81 Total 2024 Totgl 2023 Note Marketing and publicity Allocated support costs 3,1611 8,007 3,16 .007 166 11,175 11,175 b) C05t8 of tradlng aetlvllles UDr¢strlcted fund5 GeLer41 Total 2024 Total 2023 Note Costs of goods sold D¢precialion, arnortisalion and other similar costs 4,225 4,225 2,346 81 181 361 Other direct costg of activities for generating funds 32,897 37.303 20,872 ?3.579 Puge 18
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 7 Expenditur¢ on ¢harltAble actlvltles Vnrestrfieted funds General Restrlcted funds Totsl 2024 Total 2023 Note Support for WS ¢OTnmunity Conference Costs Allocatod support costs L85 60,766 (1331 60.951 (133) 22,419 5.475 531 Govemance cosis 17 4,7J7 Page 19
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 8 Analysls of governance and $upport costs Ralslng fund5 e%penditure Support costs alloe&ted to rAlslng fund5 Administration eosts Total 2014 Total 2023 Costs of generating donations and1¢8acies 1.590 Governince costs Unrestrlcted funds General Restrlcted funds Total 2024 TotAI 2023 Indepcndenl examiner fees Examination of the financial sratemenls Professional fees Other governance costs 1.344 13 3.195 lJ44 13 3.212 1,452 6,457 3.242 17 4.552 17 4.569 9 Iyet Ineomlngloutgolng resoureej Net incoming resources for the year include.. 2024 2023 Depreciation of fixed assets 181 361 10 Trustees remuner&lioD and expenses During th¢ year the charity madc the following transactions with trustees.. Mr P Lynch £Nil {2023'. £1,131) of expenses were reimbursed to Mr P Lynch during the year. Page 20
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 11 St&ff costs The aggregate payroll costs were as follows.. 2024 2023 Staff costs durlng the year were: Wages and salari¢s Pension costs 66,785 37.561 1,070 68.789 38,631 The monthly average number of persons (including senior management I leadership teatn) employed by the chanty during the year expressed as full time equivalents was as follows,. 2024 2023 Full liiiie einployees Contributions to the employee pension %¢heme.% for the year lotalled £2.1104 (2023 - £1,070). No employee received emoluments of more than £60,000 durin8 Ihe year. 12 Independent examlner's remunerltlon 2024 Z023 Other fees to examlners The examining of the accounts of the charity Page21
WolfrAm Syndrome UK Notes to the Flnancial Statements for the Year Ended 29 February 2024 13 Taxatlon The charity is a registered charity and is Ih¢r¢fore exempt from taxation. 14 Tanglble fixed asset$ Furnlture and equlpmeDt Total Cost At l Nlarch 2023 Additions 4.457 275 4.457 275 Al 29 February 2024 Depreclation Ai l March 2023 Charge for the year 4,732 4.732 4.310 4.310 Ai 29 February 2U24 4.491 Net book value Al 29 February 2024 At 28 February 2023 241 241 147 147 IS Stoek 2024 2023 Stocks 425 837 16 Debtors 2024 2023 Trade debtors Prepayrnenls 866 244 427 244 1,110 671 Page 22
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 17 Credltors; amounts falling due wlihin one year 2024 2023 Trad¢ creditors Other taxation alld social security Accruals 41 59 (222) 1.392 ?.415 2,566 18 Fund$ Balanet at 29 February 2024 Balance at I Mareh 2023 Ineomlng resource$ Resources exptnded Transfers UTrrestrlcted fund$ General General Funds 26,939 61,345 (53,215) (2,500) 32,569 Designated Resear¢h Fund Total unrestrlcted funds Restrlcted thnds Wolfram Syndrome Coofcrence Researeh Fund Breaking Dow) Barriers The National Lottery Community Fund - EWB Albert Hunt TNst BCH NHS Conlra¢t InlemL)linnal Symposium TREA Twolfram 5.t490 20,491 10 6,006 34.4AII 16,215 12,?18) (108) 3,584 496 33,672 2.219 13,584) (496) (41,465) (12,896) 50,662 8.177 42,869 2,500 10,094 Total restricted funds 76,554 75,054 60,651 2.5) Tot81 funds 108,493 136,399 (113,866) 131026 Page 23
Wolfram Syndrome UK Notes to the Financial Statements for the Year Ended 29 February 2024 B814nce at 28 February 2023 Balanee at I March 2022 Incomin% resources Re50ur¢¢s expended Transfers Unrestrfcted funds General General Futids l2,443 49,572 (35,076) 26,939 Deslgnaled Wolfram Syndromc Conference Research Fund 43 5.193 (43) 193 5.236 2Jfi 5.(KiO Totil unrestrlcted funds 17.679 49572 31.939 Restrlcted Wolfrani Syndrome Conference Re.4earch Fund Breaking Dowm Barricrs Thc National Lottery Community Fund - CWB The Nalional Lottery ComTnunity Fund - EWB Albcrt Hunt Tnt BCH NHS Contract Inlemaiion81 Symposium TREATWolfrnm 11,365 25,260 1,592 15,475) 5,890 20,491 108 5,325 (10,094) {1,484) (66) 8.325 (4,741) (504) (14,728) {2,61Y)) 3.584 496 33,672 2,219 10,094 48,400 4,819 10,094 Total restrlcted funds 47,(8 29,598 Total fund$ 65,287 1011,116 64.91ts 108.493 Page 24
Wolfram Syndrome UK 1¥4otes to the Financial Statements for the Year Ended 29 February 2024 The specific purposes for which the thnds are to be applied are as follows.. Wolfram Syndrome Conference Incom¢ and cosis towards the annual conferences. Research Fund - Funds rdised, donated or designated by WSUK to 4S51St in resear¢h of the syndrome. Breaking Barryets BDB Gront from Sylvia Adams Twst for BAME families projcct lyear l), BDB Year 2.. A second BDB grani from Sylvia Adams Trnst for a project with ihe WS community across different cultures. The National Lottery Community Fiind (TNLCF) Awards For All.. Cai'er5 Wellbeing Pilot Projecl for WS carers. The National Lottery Community Fund (TNLCF) Awards For All., Emotional W¢llbein8 Proje¢l for WS atyecled adults. Albert Hunt Trust for support of WS affected adults. BCH NHS Contract . Provision of WS related support services to Binningham Children's Hospital, IniemationAI Symposium - Funds received tOWBrds ihe cost of holdin8 an intemaiional resear¢hers symposium. TREA Twolfrarn - Funds raised. donated or designat by WSUK to assist families/individua15 in covering any Ir?v¢l/accommod&tion costs that Are incurred by ihem for taking part in the 3 year TREATWolfram clinical trial which started recruitment in January 2019, with regular visiLS lo Birniiiigham Children's Hospital & Queen EIi7Abeth Hospitsl Bimiingham. Page 25
Wolfram Syndrome UK Notes to the Flnancial Statement5 for the Year Ended 29 February 2024 19 Analysls of net 4%sets between fund$ Unrestrlcted funds General Total funds 4t 29 February 2024 Restricted funds Tangible fixed assets Current assels cUent liabilities 241 39.893 241 133,351 2.215 93,458 Totsl nei assets 131,377 UThre5trlcted funds Gener*1 Total funds at 28 February 2023 Restrieted funds Tan¥ible fixed assets CLIent assets Current liabilities 147 38,910 147 109,574 1230) 70,664 Total net assets 108491 20 Analysls of net funds A129 Febru#ry 2Q24 At l March 2023 Flnlnclng c45h flows Cash at bank and in hand 108.066 131,816 108 066 23.750 131,816 21 Related party tr4D$gCtlons During the ycar the charity made the following relaied party Iransa¢tions: Troey Lyneh (Related party of Trust¢¢ Paul Lynch) Gross wages - £17,353 12023.. £14,658). At the balance sheet date the amount due tolfrom from Tracy Lynch was £Nil (2023-£1,131). Glna 15herwood (Related paty of Truste¢ John Ishcnvood) Gross wages - £20,134 (2023.. £9,100) Paym¢nt to Gem Consult for professional 5crvices. including fundraising and other activities £6,307.50). At the balance 5heei date the amount due to/from Gina Isherwood was £Nil (2023 £Nil). £0 (2023: Page 26