Charity registratlon number 1143472 (England and Walasl Charity registratlon number SC041012 (Scotlandl Company registratlon number 07726882 (England and Wales) SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES ANNUAL REPORT AND CONSOLIDATED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023 MPS ? xeinadin auditing SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES LEGAL AND ADMINISTRATIVE INFORMATION Trustses Katy Brown Sarah Burgess Judith Evans Jarne5 Garthwaile Prof Simon Heales Prof Derralynn Hughes David Patton Phillip Pearson Wilma Robin5 Fiona Slew8rt Prof 8ry8n Wnehester Secretary Toni Ellerton Senlor management Robert Stevens John Illankovan Sophie Thomas Group chief Executive Head of Group Finan SeniDr Head of Patient Setvice5 and Clinical Liaisons Head ol Fundraising Head of Support and Advoeacy Executive Assislanl and Company Secretary HR Lead Head of Communications RDRP CEO- Left 18 July 2D23 Anna Fealherstone Slavè Cotlerell Toni Ellerton Barbara Colterell Helen Crawley Tcim Kenny Charlty number IEngland #nd Wales) 1143472 Charity number Iscotlandl SC041012 Company number 07726882 Registered office MPS House Replon Place While Lion Road Amersham Buckinghamshire HP7 9LP Auditor Xeinadin Audit Limited 2 Hilliards Court Chestér Business Park Chester Cheshire CH4 9QP SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES LEGAL AND ADMINISTRATIVE INFORMATION Bankers Baidays Bank PIC United Kingdom House 7th Floor 180 oxford Slreel London W1B 1EA Sollcltors Womble Bond DickihsDn d More London Riverside London SE12AU SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONTENTS Page Chaim)an's Slalemenl Trustees. report 2-10 Statement ol trustees, responsibilities 11 Independent audilols report 12-14 Slalemelll of finanaal aotivllies- Group 15-16 Balanc8 sheet- Group 17 Balance sheet- Chaiily 18 St8t8ment of cash flows- Group 19 Noles lo the finaneial slalemellls 20-38 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CHAIRMAN'S STATEMENT FOR THE YEAR ENDED 31 DECEMBER 2023 After all the excllemenl ol our 40th AnnI￿rSary Year in 2022 we have used 2023 as a year lo regroup and plan for Ihe future. In doing so we released our slTalegic pl8n for the next three years which set the focus of our sUPPQrt on mental health and wellbeing. We continue lo put our wembers at Ihe centre of evèrything we do bul with a more proaclive approach - rather Ih8n purely needs~led we hope lo anticipate those needs and be ready wilh support. The slralegy also continues our locus on eady diagnosis, through newborn screening and other diagnostic tDols Ihat become availablè, 8nd aims to embed standards across the specialist cenlres that our members turn lo. This year also brought the culminalion of many years of work with NICE (The National Inslilule for Health and Care Excellénce) and NHS England on highty-specialised Irealmenls, in¢luding a treatment for infantil8 lysosomal acid lipase deficienw ILAL D Wolman disease), an enzyme replacement IheTapy for Fabry disease and life-changing medication for the Iiealment ol alpha rnannosidosis. We 5UPPOrted our community through six lace-lo-face 8ven15, which induded new addillons of 3 parent wellbeing retreat and a social weekend for adults with an MPS or related condilion. It's evident from feedbaok that our community appreuate the opportunity lo weel one another in a iela%ed environment and we know how important it is lo offer these In-pergon meetings. We also appreciate that nol everyone can allend an in-person event and so introducing Ihe Support Hub was another way lo brlng our community logelher. The Hub lives on Fa￿book and is a forutll for people with these rare conditions lo provide peer support in a safe place and where our support leam can be present with a listening ear. This year of regrouping also gave us the opportunity to take a fresh look al our websile. The new sile launched al the ènd of 2023 and offers 8 cleaner and more consislenl IoDk with improved navigation. The changes were based on feedback from our community 8nd key stakeholders allowing u5 lo offer a lailored sile Ih8t works for Ihe people LTr5ing it. We hope lo conlinue to build on these foundations in 2024 and look fO￿ard lo another year of improving for our ommunity. Judi ans Chair of Trustees Dale.. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) FOR THE YEAR ENDED 31 DECEMBER 2023 The Iruslees (who are also Ihe directors of the charity for the purposes of the Companies Acll prosenl their annual report together with the audited financial slalernenls of the Soeiely for Mucopolysaccharide Diseases Ilhe chaiity and the group) for the year ended 31 December 2023. The financial slalemerils have been prepared in accordance wilh the accounting policies sel out in note 1 to the financial slalemen15 alld comply with the charity's Memorandum and Articles of Associalionl. the Companies Act 2006, Ihe Charities and Trustee Invéstmènt (Scollandl Act 2005, the Charities Accounts (Scollandl Regulation$ 2006 (as atnEndedl and "Accounting and Reporting by Char¢lies'. Statement of Recommended Practice applicable to chaiilies preparing Iheir accounts in accordanco with (he Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 102) (effective 1 January 20191. Oblectlv8s and activities Prlnclpal activity To support individuals affecled by Mucopolysac¢h8rlde diseases, Fabry and relaled ty8osomal disèasès, their families and the professionals who care for them through partnership working. implementation of the indiwdual advocacy service, increasing awarèness and raising funds for research into these diseases. Objectives and almi Our vision is for all peoplè affected by our diseases lo live the lives they want. Our mission is lo Iransform lives through specialist knowledge, support and advocacy and research, Our goals ar8 tts ensure all our community have access to.. exceptional 8UPPgrt and advi world-dass clinical care effeclive treatments In order Its carry out these goals we need to operate with effective processes by.. Achieving a financial performance that Is In lin8 with our budget and planning Cycle Investing in our staff development Ensuring good governanGg and that the organisallon Is wn In line wilh relevant guidance and regulation8 To do ihi5, we roly on.. funding from voluntary donations, corporate donors, chaTilablE trusts and foundation5 support from the public who fijndraise and take part in evenls Publlc benefit The trustee5 have paid due regard lo guidance isguÈd by the Charity Commission in deciding what activitses Ihe Charity should undertake. What are MPS and related lysosomèl dlseasas7 Mucopoly53cGharide IMPS}, Fabry and related tysosomal diseases are a group of rare, génetic diseases that affect the ILtnctioning of particular enzymes in the body ¢au5ing waste materials lo accumulatè and disrupt the functioning of the body's cells. People born with an MPS QT related disease Sre unable lo produce enzymes essential fow Ihe continual process of breaking down and replacing used materials. Babies may show no sign of the disease. bul as morè and more cells become damaged by the storage of used material, symptoms begin lo appear. Sadly. these are pmgressive diseases which lead lo an increase in problems as Ihe yeaFS go by. Eflecls of the disease vary bul are all associated wilh progressive physical disability. Over half these diseases G3use degeneration of the brain resulting in severe leamlng difficulties and death in d)iklhood. We sUPPOrt people who havè one of 27 diseases. The fvll 1181 of conditions we support Is., MPS l Huder, MPS I Hurfei Scheie, MPS I Scheie, MPS11 Hunler, MPS111 Sanfilippo. MPS IVA Morquio, MPS Vl Maioleaux-Lamy. MPS Vll Sly. MPS IX Nalowicz, Fabry disea58. Aspartylglycosaminuria IAGU}, Fucosidosis, Geleo PhysiG Dysplasia, GM- 1 Gangliosidosis, Lysosomal Ac4uld be six months of the unreslrieted resources. In a¢cordancB Wlth good praelice, this is reviewed each year to ensure that il fairly reflects the needs of tho soci8ty. The roview in the Cufrenl year coricluded that Ihe current polley of aiming fol reserves of slx months of the niEstri¢led resource$ rèmains appropriate. Cuironl year oui six months corè expanditurg equates to £730.696 12022.. £667,547). The level of frèé reserves as al 31 Docember 2023 amounted 10 £742.346 12022.. £742,845} whl¢h amounis lo 6 months of overall expenditure ofth¢ society. aior ri$k$ The tru51895 have Assessed the Ma￿￿r risks lo which the tharily Is gxposed. and are satisfied that systems ar8 In place lo mitigate exposurè to the major risks. Plans for future perlod Our focus in 2023 is lo dellver sgrvices lo support the mental health and wellbeing of In¢Jividuals and familie$ and continuo providing the resources that have al￿adY proved useful. Wa will analyse the results of our latest survey on supporting siblings lo tailor our support to fil their ne￿$. We will b6 reviéwing our bereavement $8Nl¢e and resources and will continue our work and support to young people through our'Rare Voices, group. Structure, governan¢¢ and management The Socigly is oonlro118d by ils governing document, the Memorandum and Arttcles olAssocialion, and constitutes corllpany, limiled by guar8nl88, as defi'ned by the Companies Acl 2006. The Society was found6d in 1982 and was registered with the Charity Commission In 1982 as arb unin¢orpor81gd association, registered ch8rity number 287034. On 2 August 2011 tho Society incorporated os a company limited by guarantee with the name 'Sociely for Mucupolysaccharide Disea5es'. The assets. Ilabililies and aclivllies of the Society were transferred into this charitable company on 1 November 2011. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 The trustees. who are also the directors for the purpos¢ tsf company18w, and who sevved during Ihe year and up lo the dale of signature of the financial statements were.. Katy Bwown Sarah Burgess Judith Evans James Garthwaite Prof Simon Heales Prof Derr8lynn Hughes David Patton Phillip Pearson Wilma Robins Fiona Stewart Recrultm¢nt and appointmant ol new trustees New Iru51ees are elected by the direclot811tuslees and typically hold office for six yèars. Organisatlonal slructurè The Society is governed by a Board of up lo 13 trustees known as Ihe Board of directors which meets a minirllum of five times during the year. The day to day buslness of the Society is managed by the CEO and is govemed by the Articles of Association. Wider nefrKork One trustee's firsl language is Welsh and others live in Scotland. Geographically, the MPS Sociely provides a UK wide support and individual advocacy service from MPS House based in Amèrsharn in Yuckinghamshire. Ou¥ employees are Genlral lo providing (he support, individual advocacy 5enrices and the communication of our cause. while our supporters ènable us lo achieve our goals and objectives. Risk management The trustees have idenlrfied the level of rlsks lo which the Soci6ty may be exposed and hav8 established the implementatlon of a risk managemenl strategy which compriseg qU8rterly reviews of the risks the Society may face, systems and PTocedLJres lo rniligatè Ihese risks and implemenlalion of procedures designed lo report on and minimise any potential Impact on the So¢iely should any of these risks malertalise. To strenglhen govemance the Board has established Ihree Sub-committees. that 8re chaired by lh¢ trustees with permanent Fepretsèntation from rnombers of Ihe executive. As detailed below.. Risk Sub-committee In 2022 a Risk Sub-Gommlltee was fomally established, with clear terms of referen(E and guiding Princlples. Idenlifying best praclice from the Charity Commission and using the expert knowledge of selected Iruslees. a new slruclLJre and process was created. Today, the sociely benefits from a formalised and slruclured risk management process using insights from the board and expert opinions from thè senior staff leadership team. The risk tnalrix is refreshed on a monthly basis and shared and discussed al each boawd meeting. The new risk managemenl matrix allows for Ihe simple comprehension of live risks. the archive of okl and enables reporting aligned lo our stralÈgic goals. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 Audlt and Flnance Sub-committee The Audit and Finance Gommillee undertake a lange of duties lo support the Executive and the Board lo understand the overall financial posilion tsf Ihe organigalion, deal efteclively and proaclively with key financial risks 8nd provide the necessary assurances lo key slakeholders. This work inGludes bul is not limited to, Ljndertaking a delailed revlew of the in-year financial position and supporting Ihe management of key risks and opportunilies, overseeing the effectiveness of the annual budgellng PToce55 to ensure resources are aligned effectively, overseeing the production of Ihe annual report and the associaled judgements, revtewing and approving key financial polici8s. overseeing the effectiveness ol Ihe inlemal conlrol environmènt and ensuiing thal appropriat8 audit arrangèmènts are in pl8cè and dischsrgèd sufficiently. The Committee is chaired by a trustee and always has al least one other Iruslee as a permanent member. in addition lo the Group Chief Executive and Head of Finance. The Committee meet 5 limes per year and reports on progress and mallers lor allenlion al eath full Board meeting. Clinical and Scientific Advisory Sub.Committee ICSACI The aim of the CSAC Committee is lo ensure that Ihe voices ol the patient communily, Ihe clinical community and the scientific communily are involved in the consideration of research. The main function grè., To consider the importance, scientific merit and potential Impact of research grant applicallons made lo the MPS Society. When appropriate, external peer review ol research grant applications will be sought. To provide a recommendation lo the MPS Board of Trustees on the funding ol research grant applicalions tnade lo the MPS SoGiely. CSAG may also make the MPS Board of Tiusle85 aware of polenllal fulure area5 of researth foi 8UPPQrt. Advise the Board on potential CSAC members. Act collectively or individually as Sour￿ of adV￿e to the MPS Soc4ety on clinKal or scientific research. The Board ofTrustees will appoint a Chair of CSAC who will be a m@mber of th8 main MPS B08rd ofTruslèas. The subcommillee will appoint a Vlce-chair from the membership of CSAC, Egch member wlll be appointed lor term of 3 years and new members may be appointed al any lime. Inductlon and tralning ol new trustees New Iruslees are provided wilh information about the Society and ils work, the role and re8pon8ibililie8 of Iruslees, and the composition and workings of the Board. They are given copies of the Sociely's governing inslrumenl, a foldgr of all IhE Soaely's policies and Ihe minutes of the last Board of Iruslees meetings. Trustees are ¥egLFlarly provided with the lalesl information on Èmployment and charity law. Pay policy for key management personnel The Board ol trustees are responsible for defining the Societvs pay policy and setting the annual salary for the Chief Exècutivè. Auditor In accordarn￿ with the aornpany5 artides, a resolution proposing Ihal Xeinadin Audit Limited bÉ rèappoinled as aLJdilor of the company will be pul at a General Meeting. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT (INCLUDING DIRECTORS, REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 Disclosure of infomiatlon to audltor Each of Ihe trustees has confiirned that there is no infomialion of which they are awa￿ which is relevant to the audit, bul of which the auditor is unaware. They have further confirmed that they have taken appropriate steps to identify such relevant infom)alion and lo eslablish that the auditor is awarè of such infoTmalion. The Iruslees, report was approved by the Board of Trustees. Judil Evans Trustee DatÈ'. 10- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES STATEf41ENT OF TRUSTEES. RESPONSIBILITIES FOR THE YEAR ENDED 31 DECEMBER 2023 The Irustaes, who are also the directors of Society foi Mucopolysaccharide Diseases for the purpose of company law, are rèsponsible for preparing the Trustees. Report and the financial 51al8tnenls in aocordance with applicable law and Unileil Kingdom Acctjunling Standards (United Kingdom Generalty Accepted Accounllng Practice). Company Law requires the Iruslees lo prepare finanu81 statements for each financial year whith give a true and fair vlew of the s121e of affairs of Ihe charity and CTrf Ihe in(x)ming resources 8nd spplicalion of resources. including the income and expenditure, of the charitable company for th81 year. In preparing Ihege financial slalements, the truslÈes are required lo.. select suitable accounting policies and IhÈn apply Ihern consistenlly., observe Ihe melhods and piincipl8s in the Charities SORP., makè judgement5 arKI estimates that are reasonable and prudenl., and prepare the financial slalemènts on Ihe going conceTn basls unless il is inappropriate lo presume Ihal th8 charity will continue in operation. The Ituslees are responsible for ke8plng adequate ac¢ounting records Ihal disclose with reasonable accuracy al any lime the financial p0511ion ol the chaiily and enable them to ensure that the financial slalements comply with the Companies Act 2006, the Gharities and Trustee InveslTllenl {Scotlandl Act 2005 and the Charities Accoun15 (Scolland) Regulations 2006 (as amended). Th&y are also responsible for safeguarding Ihe asséts of the charity and hence for taking reasonable 51Èps for the preVen1￿n and detection of fraud and oth8¥ irregularities. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDITOR'S REPORT TO THE MEMBERS AND TRUSTEES OF SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES Oplnlon We have audited the financial statements of Sociely for MucopoWsaccharKle Diseases (the Charitable company) and ils subsidiaries Ilhe group) for the year ended 31 Decembèr 2CJ23 which comprise the group statement of finarhcial activities, the group balance sheet, the charitable company balance sheet, the group slalemenl of cash flows and notes lo the financial stalemenls, induding significant accgunling polic4es. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounling Standards, induding Financial Rèporting Standard 102 The Financ181 Reporting Standard appI￿able in Ihe UK and Republi of Irel$nd {Uniled Kingdom Generally Accepted Aecountino Praclicel. In our opinion, thè financial slalernenls.. give a Itue and fair view ol the stale ol the group's and charitable company's affairs as al 31 December 2023 and of ils incotning resources and application of re$ourcÈs, including ils income and expendilure, for the year then ended., have been properly prepared in at￿rdance with Unlled Kingdom Generally A￿pIed Acwunting Practice., and have been prepared in accordance with Ihe requlrernenls of Ihe Cornp8ni8s Aot 2006, the Chaiilies and Trustee Investment Iscollandl Act 2005 and regulation 8 of the Charbties Accounts (Scollandl Regulations 2W6 las amended). Basis for oplnlon We conducted our audit in accoidan¢e with IntemalionAI Standards on AESdiling (UK> IISAS (UKJI and applicable law. Our responsibilitiés under those Standards are further described in the Auclitols responsibilities lor Ihe audil ol the fi'nancial slalements section of oui 18port. We are independent of the charity in accordance with the ethical requiiemènts that are relevant to our audit of the financjal sl8lements in the UK, including Ihe FRC'S Ethical Standard, And we have fulfilled our other ethical ￿SpOnsibl1111￿s in accordance with these requirements. We beliève that the audit evidence we have oblsined is sufficient and appropriate lo provid8 a basis for our opinion. Concluslons relatlng to golng concern In auditing the financial stalemenls, we hav8 collGluded thal the Iruslees, usè of the going COn￿M basis of accounlino in the preparation of the finarrial slstemenls is appropriate. Based on the work we have perfts*m8d, we have not idenlified any rnatèrial uncertainties relating lo events or conditions that, individually or collectively, may cast significant doubt on Ihe charity's abilily lo continue as a going o)ncèrn for a period ol al le2sI trwe1ve rnonlhs from when the financial statements aro aulhorised for issu@. Our respon51bililies and the rèsponsibilities of the trustees with respect lo going concèm are described in the r&levanl sections of Ihis report. other infonnatlon The other informalion comprises Ihe information included In Ihè annual report olhor than the financial statements and our audilorfs report Iherèon. The trustees are responsible for the other inforrnalion contained wrthin Ihe annual report. Our apinion on the finsncial stalemenls does not cover the olher informallon and, excepl lo the extent otherwise explicitly slated in our ￿pOrt. we do not express any form of assurance conclusion thereon. Our rtsspongibility15 to rèad the other informalion and, in doing so, consider whether the other inlomialion is materially inconsistent wilh the financial slalemenls or our knowledge obtained in the course ol Ihe audit. or olherwise appears lo be mglerially mis51aled, If we idenlfy such material inconslstencies or apparènt material misslalements. we are required lo determine whether this gives rise to a malerial misslslement in the financial 5tatemeF)Is themsèlvès. If. based on the work we have performed, we condude that Ihere is a material misslalernenl of this other inforfflation, we are require¢J lo report that fact. We have nothing lo report in this regard. 12 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDITOR'S REPORT (CONTINUED) TO THE MEMBERS AND TRUSTEES OF SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES Oplnlons on other matters prescribed by the Companies Act 2006 In our opinion, based on the work undertaken in the couise of our audit.. the information given in the Iru51ees' report for thè financial yéar for which the fin2ncial statemènts arè prepared, which includes the directors. report prepared for the purposes of company law, is ¢onsislenl with the finsncial statements., and the direclors, report included wilhin the Iruslees, report has been prepared in accordance with applicable legal requiremenls. Matters on which we are required to report by 8xceptlon In the light of the knowledge and understanding of the charity and ils environwenl obtained in the course of the audit. we have nol identified material misslalemen15 in the directors, report induded within Ihe Iiuslees, report. We have nothing to Teport in respect of the following matters in relation to which the Companies Acl 20C6 and the Charities Accounts (Scollandl Regulations 200S la8 amended) require us lo report Ic> you il, in our opinion.. adequate and proper accounting rÈcords have not beén kept, or relurns ad8quate for our audit have not been received from branches not visited by us,. or the financial slalemenls are not in agreement with the acoounling reC￿rdS and returns., or certain disclosures ol trusteès, remuneration specified by law are not made.. or we have not received all the informalKJn and explanations we require for our audit., or the Irusle8s were not enlilled lo prepare the financial slalernents in accordan￿ with the small companies regime and lake advantage of the small companies, exemptions in Preparing the Iruslees. report and from the requiremenl lo prepaff a strategic report. Responslbllltles of trustees As explained more fully in the slatemenl of liuslees, responsibllilles, the Irusloes, whc¢ ale alsts the Ilireclors of the charity for the purpose of company law. are responsible for Ihe preparation of the financial slalernenls and foi being satisfied Ih3t they give a true and fair view, and lor such internal control as the Irustees determine is necessary lo enable Ihe prepaialion of financial statemen15 that are free from material misslalemenl, whether due lo fraud or error. In preparing the financlal slalemenls, the trustees are responsible for assessing the charity's ability to continue as a going concern, disdoslng, as applirRble, matter5 related lo going toncem and using the going conTrrn basis of accounting unless the t¥uslees either intend lo liquidate th8 charitable company or to ceasÈ otkeralion5, or have no realistic alternative but to do so. AUdit0￿S responsibilities for the audit of the financlal statements We have been appoinled as auditor undei section 4411 Ilcl of the Chaillies and Trustee InveslmBnl Iscollandl AGI 2005 and under the Companies Act 2006 and report in accordance with Ihe Act8 and relevant iegulatlons made or h8ving gffecl Ihereundei. Our objectives are to obtain reasonable assurance about whether the finanual statements as a whole are free from material misstatement, whelhei due lo fraud or error, and to issue an auditoes report that includes our opinion. Reasonable assurance is a high level of assurance bul is not a guaTanlee that an audil conducted in accordance with ISAS IUW will always deteot a material misstatement when il exists. Misslalemenls can arise from fTaud or error and arè tonsiderèd material if. individually or in the aggregate, they could reasonably be expected lo influence the economic decisions of useis lakon on the basis of these finanaal slalemenls. The exlent lo which our procedures are capable of detecling irregularities. includlng fraud,15 delaÉled below. 13 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDITOR'S REPORT (CONTINUED) TO THE MEMBERS AND TRUSTEES OF SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES Enquiries of management and Ihos@ charged with govemance were held in order to identify any laws and regulation5 that could be expected lo have 3 material impact on the financial slalemBnls. Throughout the audit, the teain were updated with Ihe oulcomes of these enquiries including consideralion as lo where and how traud may OCCUT in the charitable company and the group. No instances of material non-compliance We￿ identified, all1￿Ugh the prosp8et of d@tectitvJ irregularities, including fraud, is inherently difficult. This is due lo,. difficulty in detecting irregularities,. limits imposed by the effectiveness of Ihe entity's controls; and the nature, liming and extent of the audit procedures performed. Irregularilies as a resull ol fraud ale Inheren1￿ more difficult lo detect than those that resulting from error. t)espile Ihè audil has being planned and perfomed in accordance with ISAS IUK}, Ihero 18 an unavDidable risk that material mi5Stalements may nol be delecled. A further descriplion of our responsibi1iti6s is available on the Financ4s1 Reporting Council's website al.. hllps.'Il v4ww.frc.org.uklaudilorsresponsibilities. This descriptiori forms part ol our auditor's iepotl. Use of our report This report is made solely lo the charitable company's members. as a body, in accordance with Chapter 3 01 Part 16 of the Companies Act 2006 and lo the regulation 1D ol the ChaTilies Accounts (Scotlandl Regulations 2006. Our audit work has been undertaken so that we might stale lo the charitable cornpany's members and Iruslees those m31ters we are required lo state lo them in an 8wliloVs report and for no other putpose. To the fullesl extenl permitted by law, we do not accept or assume ¥espnnsibility lo anyone other than Ihe charilsble company, thé charilablo company's member5 as a body,and the charitable cL)mpany'8 Iruslees as a body, lor our audit work, for this report, 01 lor the opinions we have formed. Helen Furlong FCCA (Senior Ststutory ALFditorl for and on behalf of Xelnadln Audlt Llmlted Accountsnts statutory Audltor 2 Hllliards Court Chèstar 8usiness Park Chester Cheshire CH4 9QP 14. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 DECEMBER 2023 Unre$trict*d Restricted funds funds 2023 2023 Total Unrestrlcted RestriGtod funds funds 2022 2022 Totsl 2023 2022 Notes Income from.. Donations and legacies Activltlès for generatlng funds Advocacy support Physiological support MPS Awareness Family support special events other income 201,290 201,290 190,139 190,139 278,845 247.396 15,000 20,000 526.241 15.000 20,000 99,797 277.170 33.500 25.000 376,967 33.500 25,000 41,500 41,500 33,750 33,750 2,500 2,500 Olher trading 8clivilies Inveslrnents 958,230 50,720 958,230 50,720 1,025,521 33,866 1,025,521 33,866 Totsl Income 1,489,085 323,896 1,812,981 1,351,823 369,420 1,721,243 Expenditure on: Raising fund$ Fundraising and publicity Commercial Irading activity 158.534 158,534 149,255 149,255 612.973 612.973 505,428 505,428 771.507 771,507 654.683 654,683 Charilable ivilies Advocacy services & member events Awareness raising Trading activities Patients siJPPOrt Research grants 355,289 184.522 359,363 714,e52 184,522 368,152 199,367 307,210 675,362 199,367 274,923 50,755 274.923 50,755 262,147 219,368 262,147 219,368 Total charitablg expendlture 865,489 359.363 1,224,852 1.049,034 307,210 1,356.244 Total expenditure 1,638.996 359,383 1.S96.359 1,703.717 307.210 2,010.927 15- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES (CONTINUED) INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 DECEMBER 2023 Unr&strlcted Restricted funds funds 2023 2023 Totsl Unrestrlcted RÈstrlcted fund funds 2022 2022 Total 2023 2022 Note$ Not expendlture and movement In funds 1147.9111 {35.4671 (183.3781 1351,8941 62,210 (289.6841 Reconciliation of funds: Fund balances al l January 2023 2,291,716 237,812 2,529.328 2.643.610 175,402 2,819.012 Fund balances at 31 December 2023 2,143,805 202,145 2.345.950 2.291.716 237,612 2,529,328 Thè statement of financial aclivities includes all gabns 8nd losses recounised in the year. All income and expenditure derive from continuing actiwties. 16 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED BALANCE SHEET AS Af 31 DECEMBER 2023 2023 2022 Not Fixed assèts Tangible assets Invèstments 15 16 1,005,049 628,497 1.034,258 317,126 1.634,546 1.351,384 Current assets Debtors Cash al b8nk 8nd in hand 540,2é8 731,411 368,552 1.287,9QO 1.271,679 1.656.452 Creditors: amoLFnts falling due within one y&ar 19 560,275 478,5C18 Nel currenl assets 711,404 1,177.944 Totsl assets less current liabllltles 2.345,950 2.529,328 The funds of the chadty Reslricled income funds UnreStr￿ted funds 21 202,145 2,143,805 237.612 2,291.716 2.345,950 2,529,328 The financial stslèmènts were approved by the ITUStees on ...>.a.loè.L Judith Trustee vans Cotnpany registration number 07726882 (England and Wales) 17- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CHARITABLE COMPANY BALANCE SHEET AS A T 31 DECEMBER 2023 2023 2022 Notss Fixed assets Tangible assets Investments 15 16 1,002,408 628.499 1.033,622 317,128 1,63LI,907 1,350.750 Current 83Sats Debtors Cash at bank and in hand 18 256,749 553,229 447,601 793,648 809.978 1,241,24S Credltor8: amounts falling due wlthln ono year 94,935 82.671 Net currenl assels 715,043 1,178,578 Total as89ts less current liabilities 2,345,950 2,529,328 The funds of th8 charity Reslricled income funds Unreslricled funds 21 202.145 2.143,805 237,612 2,291,716 2,345,950 2.529,328 The fin2ncial statements were approved by the Iruslee8 on ..oa.ILY.k(af,.... Judith Trustee vans Company registration number 07726882 (England and Wales) 18- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS FOR THE YEAR ENDED 31 DECEMBER 2023 2023 2022 Notss Cash flows from opèratlng activities Cash absorbed by operations 25 {289,5751 1438,9531 Investing actlvities Purchase of tangible fixed assets Proceeds from disposal of investments Investment income received {6.2631 1311,3711 50,720 16,6621 11,7781 33,866 Net cash lusèd inllgenerated from investlng activities 1266,914) 25,426 Net cash usad In financing acilvltE8s Nèt dècrease In ca8h and cash equivalents {$56.489) (41 3.5271 Cash and cash equiwdlents al beginning of year 1,287,900 1,701,427 Cash and cash equivalents at end of year 731,411 1,287.900 19- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023 Accounting pollcles Charlty Informatlon Society for Mucopolysa¢chaTide Diseases is a private company limited by guarantee incorporated in England and Wales. The registered office is MPS House, Replon Pt8ce, While Lion Road, Amersham, Bucklnghamshile. HP7 9LP. The group consists of the Society for Mucopolysacchaflde Dlseases and all of ils subsidiaries. 1.1 Accounting conventlon Thè financial statements have been prepar8d in accordance with ihe charily's Memorandum and Articjes of Association, the Companies Act 2006, the Chsrities and Trustee Investment IScolland} Act 2005, the Charities Accounts IScotland} Regulations 2006 las amended), FRS 1 C$2 °The Financial Reporting Standard 3pplitablè in the UK and Republic of Ireland" I'FRS 1021 and Ihe Charilies SORP "Accounting and Reporting by Chaiilie5.' Slalemenl of Rectsmrnended Practice applicable to char¢lie8 preparing their accounts in accordance with the Firiancial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021 (effective 1 January 2D191. The tharity is a Public Benefit Entity as defined by FRS 102. Th8 finan(#al slalements are prepared In sterling. which is the funcllonal ttL)rréney of the charily. Monetary arnounlg in thèsé finanoial slalemenls are rounded lo the nearesl £. Thé fin8neial slalemenls have been prepared under the historical cost convention, modified lo include the revaluation certain financial instruments al fair value. The principal accounting polÉ¢les adopled are sel out below. Th8 charitable company is a qualifying entily for Ihe purposes of FRS 102. being a member LTrf a group whèrè the parent of that group prepares publicly available consolidated financial slatemenls, including this company, which are intended to give a true 2nd fair view ol the assels, liabililies. financial position and profit or ￿sS of the group. The charitable company has therefore taken advantage of exempliorTrs fiom thè following disolosure requirements lor parent company inlormalion presented within the consolidated financial stalemenls.. Section 7 'Slalemenl of Cash Fbws,: Presentation of a slalement of cash flow and related notes and diselosures., Section 11 '8asic Financial Insliumenls, 2nd Séction 12 '0ther Finan￿al lllslrumenllssues,: Carrying amounts, interest incomelexpense and nel g3insllosses for each category of financial instrument.. basis of deletmining fair values., details of collateral, loan defaults or breaches, details of hedg8S, hedging fair value changes récognis&d in profit or Ios5 and in other comprehensive income SeGlion 33'Relaled Party Disclosures,: Compensalion for key management personnel. 1.2 Golng concem Th8 Iruslees have considered Ihè fkjlure trading of the charitsbl8 COFnpany 2nd the group and have prepared cash flow forecasts for a period of 12 months from the dale ol these Iinancial st31emenls. Al the Ilme of approving the financial slalemenls, the trustees have a reason8ble expectation that the ch3rit3ble company and group has ailequate resources to continue in opei8lional existence for Ihe foreseeable future. Thus Ihe Iruslees continue lo adopt th8 gtsino Concern basis of accounting in preparing the financial stalemenls. .20- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 A¢¢ountlng policies Icontinuedl 1.3 Charitable funds The finanual Slalements dislingulsh be0￿een reslricled and unrestricted funds. The formÈr is received from donors and is subjecl to reslriclions on the purposes for which they may bè used. Unrestricted funds are those where there ale no externally imposed restrictions. They include those furlds fr88ly available to the charity for expenditure or approprlalion lo reserves fol inlerfially (lesignated PUTpose$, Sueh ss rèsearch programmes. Designated funds comprise funds which have been sel aslde al the discretion of the Iruslees for specific purposes. The purposes and uses of the designated funds are sel out in the notes lo the financial sl8lemenls. 1.4 Income Income is recognised when the charity is legally enlilled toll after any performance conditions have been mel. the amounts be measured reliably, and il is probable Ihal income will be received. Income is slalÈd aftar trade discounts arKI other sales taxes. Voluntary income Voluntary Income, which 18 reGewed by way of reslricled and unreslrtcted donglions. gifts, legac¢es and special fund iai5ing events, 15 includÉd in Ihe sialement of financial aclivilies in full as soon as il is re¢8ived. Grants receivable Grants are recognised when the charity has enlill8menl lo the funds, any performance conditions attached lo the items of income have been mel, il is probable that th8 income will be received and Ihe amount can be measured E81iably. Legaeles Legacy income is recognised when il is certain lo bè received and can be measured with sufficient rellability. Donatlons In klnd The MPS Society appreciales the levèl of aclive support it re￿iVeS from volunteers who spend a con5idEtable amount of lime supporting our objective5, fund iaising and administering our activities. Wilhoul this volunlary support the MPS Society would incur considerable addilitsnal expense. 11 is nt)t considered practicable lor the puiposes of these financial slatemènls lo pul a monetary valuÉ on this support., the Iru51ee5 can bul offer their heartfelt gratitude to all ils volunleeis and supporters. Gifts and intangible income that Gan be quanlffied are recognised in Ihè statement of finan(llal aclivities. Invèstmant income Investment income comprises uill. building society and bank interest receivable. This is induded in the income and expendllur¢ account in Ihe year in which it is received. Income from other tradlng activities This income is frorn the trading subsidiary MPS Commercial Limited. Thls comprises patient management fees and survey research. Income is recognised al the fair value of the considewalion recEIVEd or receivable for goods and s8Mces provided in the normal course of business. 1.5 Expenditure Expendilure is accounted for on an accruals basis and has been classified under he8dings that aggregate all cost rel8led lo the category. whe￿ costs cannot be directly allribuled lo particular hèadings Ihey have been allocated lo activities on a basis consistènt with the use of resoUr￿s. Grants payable are Includèd in Ihe statement of financial activities in the year In which they relate. Grants offerèd subject lo cDndilion8 which have not been met st Ihe yearend dal8 ale noted as a commitment bul not accrued as expenditure. Allocation of Support costs 21 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 AGcountlng policies Icontlnuedl Support costs arè those functions that assist the work of the charily but do not direclly undertake chaiilable aclivities. Support cosls include He8d Office costs, finance, personnel, payroll and governance costs. Governance cosls are thos& incurred in connection wlh administration of the chaiily and compliance with ctsnstilutional and slalulory requirements. These are apportioned based on staff numbers. Pass-through costs and reimbuTSements Clinical trial expendilure and reirnbursernen15 are rbol Induded in the financisl statements. Expenditure 18 incurred by MPS Commereial Limited on behalf of patients participating in dillical IFials with costs being reimbursed by the phaMla￿ullCa1 cotnpanies. MPS Cornmeicial Limited acts as an agent ori behalf of the phami8ceulie81 companies (under guidance tsf FRS 102 section 23.41. 1.6 Tangible fixed 88sats Tangible fixed assets a￿ initially maasured at cosl and subsequently ffleasu¥ed at cost or valuation, net of depreciation and any impairmenl10sses. Depreciarlon is recognised so as to wrfle off the cost or valuation of assets less their residual values over their useful lives on the folbwing bases.. Freehold land and buildings Computers and equipment Slriaght line over SQ years Straight line over &4 years The gain or1088 8rf5ing on the disposal of an asset Is determined as the diff£rencè behueen the sale prciceeds and Ihe carrying value of the asset, and is recognised in the statement of financlll 8cts.vlt￿s. 1.7 Fixed asset Investments A subsidiary is an enlily Conlrolled by the chawity. Inveslm8nts in subsidiaries are valued al cost less provision for impairment. Inveslrnenl assets arising from dDri8le vsluablès are induded al Fn8rkel value. These assets are valuèd al open market valug al IhE dale of donation and subséquenlly revalued lo open market value as appropriate. Flxed asset investments In bonds are initially measured al transaction pri￿ excluding transaction costs. and are subsequently measuTed al fair value al each reporting dale. Changes in lair value are re¢ognisod in nel incomellexpenditure) for the yeaf. Transaction costs are expensed as incurred. 1.8 Impalrment of fixed assets Al each rèporting end dale, the Gharily reviews the carrytng Amounts of its tangible a8sels lo determine whether there is any indication that those assets have suffered an impairment loss. If any such indication exists, the recoverable amount of the asset is èstimated in order lo delerrnine the extent of the irnp3irment loss {rfanyl. 1.9 Cash and Cash equival8nts Cash and cash 8quivalents include cash in hand. deposits held at call with banks, olher short-lerm liquid investments with origin81 maturities ol three months or less, and bank overdrafls. Bank overdrafls are shown within bcbrrow¢ngs in current liabilities. 22- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 Accountlng pollcles (Continued) 1.10 Financial Instruments The charity has elected lo apply thè provisions of Section 11 'Basic Financial Inslrumenls, and Sectlon 12 'Olher Finanaal Instruments Issues, of FRS f02 10 all cjf ils financial instruments. Finandal instruments ale recognised in the charity's balance sheet when the tharily becomes party to the contractual provisions of the Inslrumenl. Financial assets and liabilities are offset. wllh the nel 8moLJnts presented in the financial slalemen13, when there is a189311y enftsr￿ab1e right lo sel off the recognised amounts and thère is an intention lo seltle on a nel basis or lo realise the asset and sellle the liability simultaneously. Basi¢ flnancialassels Basic financial assets, which iriclude deblor5 and cash and bank balances. are initially rneasured at transaction price including Iransaclion cos15 anil ar8 subsequently carried at amortised cost using the effective interest method unless the arrangement conslilules a financing transaction, where the transaction is measured al th8 present value of the future re￿ip{S discounted al a market rate of inlèresl. Finan￿81 assets classified as receivable wilhln one year are not amortised. 8asic finanelèlllabillties Basic financial liabilities, including creditors and bank loans are initially recognised al transaction price unless the arr8ngèm&nt constitutes a financing Iransaclion. where the dèbt instrument is measured al the piesenl value of the future payments discounted at a market rale of interest. Financial liabilities classified as payable within one year ale nDI amortised. Debt inslrumentg are subsequently rarried al amortised cost, using the effective interest rale method. Trade creditors arè obligations to pay for goods or services that have been 4cquir¢d in the ordinary course of operations from suppliÈrs. Amounts payable are classified as current liabilitie5 if paymenl is due wilhin one year or less. If not, they are piesellled as norb-current liabilities. Trade creditors are recognisÈd initially at Iransaction price and subsequently measured al amortised cosl using Ihe effective interest method. Dor￿OgnItIOn of flnancial liabilhles Financial liabl￿tieS arè dèrecognised when the charity's contractual obligations expire or are discharged or cancelled. 1.11 Taxatlon The SO(￿ety as a registered charity is nol considÉr8d to be liable to laxalion. VAT incurred is not recoverable and is included in relevant expenditure. 1.12 Rgtlrement benefits The Society conlribules 5% of gross salary lo individual employees, pension schemes. Ctsntribulions payable to individual defined contribution pension schemes are charged lo the statement of flnandal activi1188 In the period lo which they relate. 23- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUEDI FOR THE YEAR ENDED 31 DECEMBER 2023 Critic818ccounting estlmates and lydggments In the application of IhÈ charity's accounling policies, the Iiuslees are required to make judgements, Bslimales and assumptions about the c8rrying afflounl of assets and liabililseg Ihal are not readily apparent from other Sources. The eslimates and associated assumptions are based on hislori¢al experien¢e and other factors that are Gonsidered lo be relevant. Aclual re8ulls may differ from these eslimales. The estimales and underlying assumptions are revlewed on an ongoing basis. Revisions lo sccounling eslimales are recogriised in the period in which the estimate is rew5ed where the revision affects only that period, or In the period of the remston and future periods where the revislon affects both current and fulure periods. Legal status The charity Is a company limited by guarantee. The mernbers ol the company are the Iruslees named on page 1, In the event of the charity being wound up. the liability in ￿Sp&Cl of the guarantee is limited lo £1 per membèr ofthe charity. Income from donatlons and leyacles Unrèstrictsd funds 2023 Unrestrlctsd funds 2022 Donations and gifts Legacies re￿1vab 68.062 133,228 174,931 15,208 201,290 190,139 24- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 Income from charltsljle actlvities Unrestrlcted Restrictsd funds fun(ts 2023 2D23 Total Unbtstrlcted Restrlcted funds funds 2022 2022 Total 2023 2022 Advocaey support Grants receivable National Lottery community fund 278,845 169,800 448.645 99,797 212,170 311,967 77,596 77,596 65,0 65,0(X) Ph￿l010g5Cal support Grants receivable 15,000 15.000 33,5 33,5Cx) MPS Awarenèss Grants receivable 20.000 20.000 25,0( 25,OCX) Famlty support special events Grants receivable 41,500 41.500 33,750 33,750 Other income Grants receivable 2,500 2,5 278,845 323,898 602.741 102,297 369,420 471,717 Incpme from other trading activities Unrgstrlcted Unrestrlcted funds funds 2023 2022 Survey income in subsidiary Management fees in subsidiary 479,497 478,733 45S,623 568,898 other trading aclniilies 958,230 1,025,521 Income from investmtnts Unrestrlctad Unrestricted funds funds 2023 2022 Renial income Inlerest receThiable 29,917 20.803 29,951 3.915 50,720 33,866 -25- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 Expèndlturè on raising funds Unrestricted Unrestri¢tsd funds funds 2023 2022 Fundraising and publicity Grant consultancy costs Fundraising expenses Staff costs Depreciation and Impairment Support costs 6,02 15,475 105,747 6,404 24,882 33,604 20,596 61,081 S,7C 27,274 158.534 149,255 Trading costs Survey costs Staff costs Depfftoialion and impairment Support costs 41,936 412,384 2,456 156,197 73,914 393.220 636 37,658 612,973 505.428 Total costs 771.507 654.683 28- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 Expendlturg on charitsble artlvllles AdvDcacy Awar8nes5 Trading R¢sparch servlGos & raising activities grants tnember Patients events support 2023 2023 Total 2023 2023 2023 Direct costs Staff costs Depreciation and impairment Conference and expert meetings Gommunlcalion MPS awarènèss Donations and Iribules in memory Patient welfare gifts 412,202 16,009 133.157 2,15LI 118,862 4,802 274,923 805,987 2o,811 133,157 17.519 311 429 111 15,369 311 429 111 564.058 139.344 274.923 978,325 Research g¥anls Isoe note 101 50,755 50,755 Share of support and governance costs Isee note 111 Support 57,075 Gov8in3nce 93,519 17,122 28,056 74,197 121.575 714,652 184,522 274,923 50,755 1,224,852 Analysls by fund Unrèstiicted funds Reslrioled funds 355,289 359.363 184,522 274,923 50,755 865,489 359,363 714,652 184,522 274,923 50.755 1,224,852 -27. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 Expenditure on charitsblo a¢tJvltlÈs Contlnuedl Prèvlous year: Advocacy Awareness Trading Research services & raising activities- grants member Patients èvènts support 2022 2022 Totsl 2022 2022 2022 Dlre¢t costs Staff cosls Depreciation and impairment Confe¥ence and expert meetings CorMmunic8lion MPS awareness Don3lions and Iribules in memory Patient welfare gifts 397,795 16,753 107,743 6,568 115,422 5,027 262,147 775,364 21,780 107.743 40.136 1.945 1.640 180 33,568 1,945 1,640 180 530,679 155.962 262,147 948,788 Granl funding of adivities (see note 10) 219.368 219,368 Share of support and governance costs18ee note 111 Support 54,834 Governance 89.849 16.450 28.955 71,284 116,804 675.362 199.367 262,147 219,368 1,356,244 Analysis by fund Unrestricted funds ReslriGled funds 368,152 307,21 199,367 262.147 219,￿8 1.049.034 307,210 675,362 199,367 262,147 219,368 t,356,244 10 Grants payable In 2022, grants were awarded for srx projects which coveied topics such as Ihg link beiween physicAI activity and menlal health in adults with Fabry disease. and the development of a malhemalical model lo calculate the risk of worseniny airway and lung problems in people with MPS IVA Morquio. Granls payable costs have all been allribLFted lo chaiil8ble aclivily expenditur8. .28. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 q1 Support costs allocatsd to activities 2023 2022 Rectuilmenl & Training costs Gènèral office axpens8s Insurance SLJbscriptions Staff welfare Computer Expense5 Bank charge5 Bed debts Travel and subsistence Consullanoy expesnes Governance costs 8.559 62.072 13.895 2,472 t4,875 32.764 6.149 100,000 11,988 20,163 104,914 8,118 51.201 19.292 1,106 7,748 25,867 4,387 8.644 9.853 116,804 376,851 253,020 Analysed bett￿een. Fundraising Trading Advocacy seNices & member events Awarènèss raising 24,882 156,197 15J,594 45.178 27.274 37.658 144,683 43.405 376,851 253,020 2023 2022 Govèrnancè costs comprisè.. Staff costs Depreciation Audit fees Legal and professlDn81 MAnagement costs 54,873 4,803 8,353 e,193 30,692 53,456 5,025 8,700 8.658 40.965 1 J4,914 116,804 12 Trust•8S No trustee or related person recelved any rernunerallon from the Society in respeot of sewices os an employee oflhe enlily. All Ituslees are reitllbur5ed for IhEir expenses or expenses ère paid lor by Ihe charily on behalf of Iruslees. svhich are necessarily incuired in allending managernenl commillee meetings and in performing their duties as Iruslees. The Chief Executive Officer of the Soclely approves the reirnbursemenl of such expenses. In 2023 these lotalled £2.321 {2022'. £1,043) foi all Iruslees. -29- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEf61ENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 13 Employee6 The aveiag8 monthly numbar of 8mployees during the year was., 2023 Numb•r 2022 Number Chief execulbvès Adminislralion Advice, information & support Cotnmeicial Ir2ding operation 16 14 14 Tolal 37 34 Emplaymènt costs 2023 2022 Wages and salaries Social security costs Other pension costs 1,215.268 104,567 59.156 1,113.275 117,651 52,195 1,378.991 1,283,121 The number ofemployees whose annual remuneration was more than £60,000 is as follows,. 2023 Numbor 2D22 Numbèr £90,CMJ1- £100,QOO £100.001- £110,000 £130,001- £140,000 Rèmuneratlon of key management personnel The remuneration of key management personnel is as follows. The key management personnel of the group. compiise the Iruslees, the group chief executive officer, the commÈrcial ehiel executive officer. head of advocacy, head of fundraising and head of finance. The total employee benefits ol the key management personnel were £334,300 (2022.. £359,893), The highe81 patd employee of the chaiity had acciued £5,76912022'. £5.048} in employer pension contributions and the highest paid employee of Ihe gioup had awrued £5,47712022'. £6,555) in ernployer pension conlribulions. 14 Taxation The charity is exempt from laxalion on its ac15wlies because all ils income is applied for charitable purposes. -30- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 IS Tanglble Fixed Assets- Group Fr86hold land Compuiart and bulldlng8and 8qulprnent Total Cost At 1 January 2D23 Additions 1,435,389 70,138 1.505,527 6.263 6,263 Al 31 December 2023 1,435,389 76,401 1,511,790 Depreciatlon and Impalrment Al l January 2023 Depreciation ch8rged in Ihe year 408.285 28,708 62.981 5,767 471.266 34.475 Al 31 December 2023 436,993 68.748 505,741 Carrylng amount Al 31 Decembe¥ 2023 998,39S 7,653 1,006,049 Al 31 D￿mber 2022 1,027,104 7.154 1,034,258 Tangible Fixed A88èts- Charity Freehold land Comput8r8 and bylldlng53nd 2qUIpr￿llt Totsl Cost Al 1 January 2023 Additions 1,435,389 59,526 1,494,915 802 802 Al 31 December 2023 1,435,389 6D.328 1.495,717 Depre¢latlon and Impairnient Al 1 January 2023 Dépreciation charged in the ygar 408,285 28,708 72,957 8,223 481,242 36.931 Al 31 December 2023 436,993 81,180 518,173 Canying amount Al 31 Dée8mber 2023 998,396 4,012 1,002,408 Al 31 December 2022 1,027,1Q4 8,518 1,033.622 31 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 16 Fixed asset investmÈnts- Group Donated Bank bonds Jewellary Shares in subsldiaries Total Cost orvaluatiorh Al 1 January 2023 Additions 5,100 311.026 311,371 317,126 311.371 At 31 DeoembeT 2023 6,100 622,397 628.497 Carrying amount Al 31 December 2023 6,100 622,397 628,497 Al 31 Decémber 2022 6.100 311,026 317,126 Fixed asset Investments- Charlty Donated Bank bonds lewellery Shares In subsidlaries Totsl Cost or valuation Al 1 Jariuary 2023 Additions 6,1 311,026 311,371 317,128 311,371 Al 31 D8cember 2023 8,100 622.397 828,499 Carrying amount Al 31 December 2023 6.100 622,3Q7 628.499 Al 31 December 2022 6.100 311,026 317.128 There werè no inveslrnent 85$81s outside the UK. Donatsd jewellery The donated jewellery is stated al thè valuation arrived 81 by DJ Warner Jewellers in 2011. The valuers ar indèpendent of the Society. The trustees continue lo use thls basis of valuation. Investment In bank bonds The Society frjr Mucopolysaccharide Diseases reinvested £622,397 in fixed business bonds, which ar& due to ature within less than one yeai. Of the £622,397 invèsted, £200,000 has been allocated lo the desigllaled fund- £150,000 for the Research Fund and £50,000 for the servi￿ Developrnènt Fund. 32- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 17 Subsidlarles Delaiis of Ihe chari(￿S subsidiaries at 31 Decembei 2(J23 are as follows.. Namg ofundertaking Class of shares held % Held MPS Commercial Limited Rare Disease Research Partners Limited Ordinary £1 Ordinary £1 100,00 100.00 The aggregate capital and reserves and the resLJIt for the year of subsidiaries exCI￿led from consolidation was as follows.. Name of undertaklng PmllVILo$s) Capital and Reserve3 MPS Commercial Limited Rare disease Research Partners Lirniled The wholly owned subsidiaries., MPS Cornmerci81 Limited and Rare Disease Research Partners Limited and trading and dormant respectivety. Both subsidiaiies a￿ incorporated in England and Wales, and have the registered office ol MPS House, Rèpton Place, While Lion Road, Amersham, Buckinghamshiie, HP7 9LP. All profits generated by subsidiaries are dislribuled via Gift Aid to the parent ch8rily under a t)eed of Covenant. 18 Dobtors- Group 2023 2022 Amounts falling due within onè year. Trade debtors Other debtors Prepayments and accrued income 499,760 1,435 39,073 327,585 2.249 38.718 540,268 368,552 Dèbtors - Charlty 2023 2022 Amounts fallSng due withln onè year: Trade debtors Amounts owed by group underlakings Other debtors Prepaymènts and acuued income 1,470 240.386 1,435 13.458 5.029 432,465 1,988 8.119 256,749 447,601 -33- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 18 Debtor8- Group {Contlnuedl 19 Cyedltors: amounts falllng due wlthin one year- Group 2023 2022 Other laxalion and socAal security Trade creditors Other creditors Accruals and deferr8d inwme 30,403 19,429 245.495 264.948 32,398 428,997 17,113 5eO.275 478.508 Crgdltors: amounts fxlling due within one year Charity 2023 2022 Trade créditors Other creditors Accruals and deferyed income 5.856 13,586 75.493 12.034 35,724 14,913 94,935 82.671 Induded within other creditors is deferred income of £253,178 12022: £187,140). Deferred income is Te¢ognised in MPS Commercial where administration fees for palients are sprèad accordingly with their associated period. Defeired income in The Society For Mucopolysaccharide Diseasés is reeognised in respect of grants whÈrè the performance agreement runs across multiple periods. All of the defetred income recorded in 2022 has been subsequently r8cognised as incorno in 2023. 20 Retiremènt baneflt schem Deflned contribution Schemes The charity operslès a defined conlrtbution pension scheme for all qu81ifying employees. The assets of the eme are held separately from Iho88 of the charity in an independently administered fund. The charge to profit or105s in fBspect of defined conlribution schemes was £59,15612022- £52,195). Al 31 December 2023 the amounts otslstanding were £6,51Q12022 £7,647). -34- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 21 Restrlcted funds The restricted funds of the charity comprise the unexpended balances of donallons and grants held on trust subject lo Specif￿ condilions by donors as lo how they may be used. At l January 2023 Incomlng re50urce5 Resources expended At31 December 2023 MPS rpslricled fund LSD reslricted fund Research restricted fund 116,965 11,270 109,377 312,246 11,150 {352,2831 17.0801 76.928 15,340 109,877 237,612 323,896 {359,3631 202.145 Prévious year: At 1 January 2022 Incoming resources Resources expended At31 December 2022 MPS restrlcled fund LSD re511icled fund Research réstricted fund 50,109 15.916 109,377 369.420 {302,5641 (4,6461 116,965 11,270 1 Q9,377 175,402 369,420 (307,2101 237,612 Restricted fLEnds MPS restricted fund- to support Disease booklets and Advocacy servlaes. LSD restricted fund- lo support Lysosomal Storage Disease related meetings and conferences. Research restricted fund- lo support MPS research related projects. 35- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 22 Unrestrlctsd fund$ The unrèstricted funds of the charity cornpilse the unexpended balances of donalions and grants which are not subjÈcl lo spocific conditions by donors and granlors as lo how th8y may be used. These include designated funds which have been sel aside out of unreslricled funds by thè trustees for specific purposes. At 1 January 2023 Incomlng resources Resources expended At31 December 2023 Gènèr81 charitable fund Property fund Research lund Service developèmÈnt fund Building ￿fu[b￿$hMenI fund Chii81ine Lavery memorial fund 750,000 1,027.103 147,929 166,684 100,000 100.000 1,489.085 (1,489,085) 128,708) 150.7551 168,448) 750,000 8.395 97.174 98.236 1QO,000 Iiio,000 2,291.716 1,489,085 11,636,996) 2,143.805 Prevlou5 year: At l January 2022 Incoming resoyrcgs Resources expended A131 December 2022 General charitable fund Property fund Research fund Servlce devèlopèmenl fund Building refuibi5hmenl fund Christine Lavery memorial fund 750.000 1.055,811 367,297 270,502 100.000 100.000 1,351.823 11,351,823) 128.708) 1219,368) 1103.818) 750,000 1,027.103 147.929 166,684 100,000 loo.000 2,643,610 1,351,823 11,703,717) 2,291.716 De8ignat8d funds Research fund- to support MPS research related projBcts. SeNice developmenl IL)r￿- to develop MPS new semce foi members. Building refurbishment fund- for the maintenance of MPS House. Christine Lavery memorial fund - lo support Christine Lavery's memorial charitable evènts. SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 23 Analysis of net assets betrleen funds Unrestrictèd funds 2023 R&strictsd funds 2023 Total 2023 Fund balane•s at 31 December 2023 are repre$gnfyd by: Tangible a55ets Investments Currenl asselsllliabililies} 1,006,049 628,497 509,259 1,006,049 628,497 711,404 202,145 2,143,805 202,145 2,345,950 Unrestricted funds 2022 Restricted funds 2022 Total 2022 Fund balances at 31 Deeember 2022 are represented by: Tangible assets Investments Curr8nl a55elsllliabilities) 1,034.258 317,126 940,332 1,034,258 317,126 1.177.944 237,S12 2,291.716 237,S12 2,529,328 24 Related party tran$actlon$ Transactlons wlth rélated partles -37- SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023 24 Related party transactions Icontlnuedl MPS Commercial Litniled and Rare Disease Research Partners Limited are 1000A owned subsidiaries of The Society lor MUcopolysa￿h0[Ide Diseases. Included in olh8r deblors within the charitable cornpany is IhB inlerGompany balan￿ of £240,386 12022= £432.4651. All thè profits of MPS Commercial Limited for the peTiod have been distributed by Gift Aid to the charity. Ihese lolalled £40,38712022'. £232,465). Rent And r8charges of £20.000 {2022'. £20,QI0O) were made by The Society for Mucopolysaccharlde Dlseases lo MPS Commercial Limited. The Sociely for Mucopotysaccharide Diseases has provided MPS Commercial Limited Mlh a £200,000 long- leirn103n12022.' £200,OQOI on which inlerest Df £13,00012022'. £6,125) was charged. During the year donations and pledges of £ 12022., £1,540) were recewed from Iru5tees ofthe charity. 25 Ca¥h gènerated from operatlons 2023 2022 Oeficil forthe year 1183,3781 1289,6841 Adjusltnents for.. Investment inc4)me recognised statement Of financial actiwlies DeprecialioTI itnpairmènt of tangible fixed assets (50,7201 34,474 {33,8661 34,141 ovements in working Gapital,, Ilncrease) in debtors Increaselldeueasel kn creditors 1171,7161 81,767 (53,4551 (96,0891 Cash absorbed by opèrations 1289,5731 1438,9531 26 Analysls of changes in net fund8 The charity had no maleiial debt duririg Ihe yeAr. -38-