Charlty reglstration number 1143472 (England and Wales) Charlly reglstration number SC041012 (Scotlandl Company reglstration number 07726882 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES ANNUAL REPORT AND CONSOLIDATED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024 MPS Society MPS transforming lives through supporL research & awareness • xeinadin
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES LEGAL AND ADMINISTRATIVE INFORMATION Trustees Katy Brown Sarah Burgess Judith Evans Professor Simon Heales Professor Derralynn Hughes D M Pallon Phillip Pearson VVThlma Robins Fion8 Stewart Dr G M¢Kee Prol B G Winchester (Appointed 26 January 20241 Secretary Toni ElleFton Sgnlor manay8m8nt Robert Stevens John Illankov2n Sophie Thomas Group Chief Executiv8 Head of Group Finance Senior Head of Patient Services and Clinical Liaisons Head of Fundraising Head of Support and Advocacy Executive Assistant and Company Secretary HR Lead Head of Communications Anna Fealherslone Steve Collerell Toni Ellerton Barbara Cotlerell Helen Crawley Charlty numb&r (England and Walesl 1143472 Charlty number (Scollandl SC041012 Company number 07726882 R8gistered offlce MPS House Repton Place ile Lion Road Amersham Bu¢kinghamshire HP7 9LP Audltor Xeinadin Audit Limited 46 Hamilton Square Birkenhead Imtral Merseyside CH41 SAR Solicltors Womble Bond Dickinson 4 Mofe London Riverside London SE12AU
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONTENTS Page Chairman's slalement Trustees, report 2-11 Slalemenl of trustees. responsibilitie8 12 Independent audit,$ rewrt 13-15 Slalemenl of financial activities 16-17 Balance sheet 18 Stalemenl of cash flows 20 Notes lo the fi'nancial statements 21-40
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CHAIRIAAN'S STATEMENT FOR THE YEAR ENDED 31 DECEMBER 2024 This year was one ol the most challenging in the MPS Society's history bul a51 reflect on how we dealt with those challengès, many of which could not have been envisaged, I can see so many new ideas which were generated and I feel proud of the diverse approach we have adopted lo support our Gommunily as we react lo their ch8nging needs. As aays, we continue lo pul our communty al the centre of everylhing we do. The exciting and very successful Fabry Mallers Conference 2024 was a major highlight, collecting data and informing the patient community in a single productive weekend. This was a completely new approach lo the way we run ? conferenc@, and proved extremely popular with the community, clinicians, pharma, and all who allended, and il will help to inform the way we organisè future events. We expanded th8 Facebook Support hub with the addition of VVh8tsApp based social hubs these have really taken off under the guidance of the Support and Advocacy team. We now have support groups for our Fabry community, bereaved f8milies and our young voices, alongside the support hub on F?cebook. We are also running regular virtual coffee mornings for groups le gel together and share experiences or just have a chal, Bul we also see the importance of continuing lo offer face-lo-fa¢e events and were able ID offer plenty of activitiès for individuals and families alongside the online communities. In March we launched the Weekly Lucky Lollery which was a new Ventu for fundraising. So far 90 people are playing. and we've had 37 winners. 11 was a COrd year for the London Maralhon raising over £45,000. an incredible amount. We joined the Kind 2 Mind camp8ign dur¢ng MPS Awareness Week and thanks lo pledgèrs raised a super £28.000, and we also exceeded expectations for the Big Give Christmas Campaign raislng a further £32,OOLI. Il's been a busy year for our clinical advisory committee, CSAC. We are delighted that Professor Simon Jones and Dr David Whileman have joined the committee, bringing their 8xpertise lo the team. We decided lo put out a single call for grants. so we could assess all 8pplications together. After careful consideration, we agreed lo award grants lo three applicants. As we had a smaller fund to award than in previous years. we needed lo make sure we funded projects that will most benefit our members, The MPS Souety has always been an innovator in the rare disease community and as we look foThvard io 2025 and beyond, we wll conlinue lo carry out our vlsion and misslon for the benefit of our communily. Judi ans Chair of Trustèes Dale..
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORTI FOR THE YEAR ENDED 31 DECEMBER 2024 The Iruslees {who are also the directors of the charity for the purposes of the Companies A¢1) present their anntjal report together with (he audited financial slalemanls of the Society for MucopolysacGharide Diseases Ilhe Charity and the group) lor Ihe y63r ended 31 December 2024. The financ4al stalemenls have been prepared in accordance with the accounting policies sel out in note 1 to the financial slalemenls and comply with the charity's governing document, the Companies A¢1 2006, the Charities and Trustee Inveslmenl (Scollandl Act 2005, Ihe Charities Accounts Iscollandl Regul8tic>ns 2006, FRS 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland" and the Charities SORP "Accounting and Reporting by Charities.. Statement of Recommended Practice applicable lo ch81ilies prepar¢ng their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021" Objecllv&$ and activltles Princlpal a¢tlvity To support individuals affected by Mucopolysaccharide diseases, Fabry and related lysosomal diseases. their families and the professionals who car& for them through partnership working. implemenlaliDn of the indivldual advocacy seNice, increasing awareness and raising funds for research into thes& diseases. Objectives and alms Our vision is for all people affected by our diseases to live the lives they want. Our mlsslon is lo transform lives through specialist knOttdge, support and advocacy and research. Our goals are lo ensure all our community have access to.. exceptional 5UPPOrt and advice world-class dinical care effective treatments In order to carry out these goa18 we need lo operate wlh effective pceSseS by.. Achieving 3 financial performance that is in line wlh our budget and planning cyde Invesling in our staff development Ensuring good governance and that the organisallon is run in line wlh relevant guidance and regulations To do this, WÈ rely on.. funding from voluntary donations, corporate donors. charitable trusts and foundations support from the public who fundraise an(1 lake part in events PubllG benefit The Iruslees have paid due regard to guidance issued by the Charity Commission in deudlng what aclivilies the eharily should undertake. What are MPS and related lysosomal dlseas8s? Mucopolysaccharide IMPSI, Fabry and related lysosomal diseases are a group of rare, genetic diseases that affect the functioning of particular enzymes in the body causing waste materials lo accumulale and disrupt the functioning of the body's cells. People born with an MPS or related disease are unable lo produGe enzymes essential for the continual process of breaking down and replacing used malerials. Babies may show no sign of the disease, bul a5 more and wnor8 cells become damaged by the storage of used material, symptoms begin lo appear. Sadly, these are progressive diseases which lead lo an increase in problems as the years go by. Effects of the disease vary bul are all as50Gialed wilh progressive physical disability. Over h?If these diseases cause degeneration of the brain resulting in severe learning difficulties and dealh in childhood. We support people who have one of 27 diseases. The full list of conditions we support 18.. MPS l Hurler, MPS I Hurler Scheie, MPS I Scheie, MPS 11 Hunter, MPS111 Sanfilippo, MPS IVA Morqults, MPS Vl Maroleaux-Lamy, MPS Vll Sly, MPS IX Nalowicz, Fabry disease, Aspartylglycosaminuria IAGUI. Fucosidosis, Gel80 Physic Dysplasia, Gh 1 Gangli0sid05is, Ly50somal Acid Lipase Deficiency (LAL D), Alpha-Mann05idosis, Bela-mannosidosis, MSD Multiple sulphalase defici&ncy, MelachromaliG Leukodyslrophy, ML l Neurarnidase Delicien¢y, ML 11 i-cell disease, ML 111 Pseudo Hurler Polydystrophy, ML IV. Si81ic Acid Storage Disease, Winchester. Gaucher and Farber disease.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Achlevements and performance Access to Exceptlonal Support andA(fvice Support and Advocacy Team Throughout 2024 our Support and Advocacy Team have been slrenglhening the offer lo our member commLtnily. This has been through engagemenl, community groups and events and individual support and advocacy. The top three areas where the team have as$isled the community were via emotional support, through allending an event and through help with benefits. Of those provided feedback. 75.5Yo were satisfied or very satisfied with the support they received and 84.4% would seek support in the future. In 2024 we welGomed 68 new members lo the MPS Sou&ty who join for free and ale given specialised practical and emotional support for their whole famity. Communlty groups We expanded the support hub from a private Facebook group lo a series of community lthatsApp groups which include.. MPS Soclal Hub- a group operb lo all our members {bolh affected and unaffecledl Fabry- open lo all our Fabry community as IheiT needs can differ from Ihe wider MPS community. We 8lso offer a Fabry men's group. Tlme to chal combines a weekly Zoom catch up and lively WhalsApp group for over 18s who are affected by MPS or a relaled wndition. Parents and earers we offer several active lthalsApp groups for mums, dads and those who have caring responsibilities which acts as a place lo share. vent and find a shoulder lo lean on. B8reaved-we offer opportunities for bereavecl families lo meet virtually throughout the year. Scottlsh Families a regional group for members living in Scotland Alongside our lfvhalsApp eommunilies we now offer a range of vlrtual eoffee momings (via T8amsl. These include groups for parents and carers, our Fabry community and our bereaved communily. These points of Connection serve to increas@ community connection and provide tsi5ored group education. Membersh5p and Community Engagemont We want lo ensure that everything we do aligns wlh the needs of our members. We do this by listening to OUT members, seeking feedback about existing servic@s and providing opportunitie8 for members lo meaningfully engage wlh us and influence the direction of the seryices we provtde. Rzre Voices, launched in 2024, is a member engagement forum hosted by the MPS Society Support and Advocacy Team. Our aim is for Rare Voices lo include a represenlalive group of affected adults, parents, Carers, siblings and bereaved members. The purpose of the group is lo proviée represenlalives from the MPS Society membership wilh forum lo provide feedback, make suggestions and influ8nce how th8 MPS provides services to OUT membership. In 2025 we are addir¢g an Ambassador Programme for affected adult members. Mèntal health support We offer a range of virtual wellbeing support opportunilles for our community lo connect with peers and to access support lo improve mental heafth and wellbeing, plus 1-10-1 counselling (in 2024 we provided 162 counselling Sessions per year averaging 10 sessions per client).
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT IINCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Support èvénts In 2024 we held nine events bringing more than 700 people together. We offer opportunities lor affected children, young people and their parents lo spend a day with people just like them and we reach out lo our ber@8ved community lo come together and share memories and experiences. Our events are also an excellent opportunity for ourAdvocacy & Support team lo meet with members new and old in a casual selling. Our families weie unanimous in expressing the impact meeting other families and being able lo share slortes, lips, and support has on th8m and this shows in the feedback received follow¢ng each of our events in 2024. Alton Towers family week&nd - June 'It was lovely to come 8s a family and meet new friends in the ev8ning - also the price perperson for the hotel 8nd entranGe lickets was amazing. Newly dlagnosed famlly get together- July "We'd &lso n8ver met anyone wilh MPS conditions other than Huffl8Ts 50 there were a lot of unknowns going into lh8 day...we hsd th& opportunity Io Ghat to 8ob for quite a while which we really valued and we have 8 good calch up with Sally Advocacy loo.. Legoland - August "Seeiiig Ihe olh8r MPS families and having lh6 rid8 passes this lime frFad8 such a difference to ourda Weekend ofrem8mbrBiice- Seplember "Beautiful way lo slill feel supported 8nd part of the MPS sociely 8fterlosing ourloved ones" IndependentAdultwe8kend- November "G61ting logelher with people with my Condit, ch8fting and having a laugh" Fabry Matters 2024 In March 2024. the MPS Society organised a Fabry conference, bringing together patients, researchers, and dinicians for a weekend of connection and knowledge-sharing within the Fabry community. Insights were gathered during the event from Fabry patients ancl their caregivèrs through surveys and inleraclive post-il note boards, providing valuable perspe¢liv8s on their experien5 and needs. This was a new approach lo data gathering which me3nt we could gain insights from an often over-surveyed Gommunily whilst offering knowledge in return. 11 provided information on symptom management, alliludes lo reséarch and clinical IrFals and an emotional map of the patient's Fabry joumey.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT (INCLUDING DIRECTORS, REPORT} {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Access to World-class Clinical Ca Clinlcal Scienliflc Advlsory Commlttee In 2024 OLÈr Clinical Sci&nlific Advisory Commillee ICSAC) paid out £81,934 in grants and committed a further £129,766 to fund future r@search. The committee were able lo fully fund two grant applications. The lirsl one focused on MPS111 Sanfilippo and the other revolves around the blood brain barrier. In addition, they offewed partial funding in the form of a 'challenge grant. for a project looking al lysosomal damage repair, We ran a virtual CSAC open day al the start of October which included.. PTesenlalions about what a biomarker is 8nd how we measure il by Kevin Mi11s, an update on Brian Bigger's research. a look 818 study lo improve the quality of life of adults with Fabry disease using exercise by Sarah Gosling and Dan Bailey as well as an overview of what is happening in Rare Disease Research Partners IRDRPI by Alex Morrison. CSAC also gave funds towards two projects that took part in the Dragon's Den slyle competition at the Fabry Matters 2024 conference. These were.. Establishing Novel Retinal Vascular and Neural Biomarkers in Fabry Patients Using Optical Coherence Tomography Angiography IOCT-A) for Assessing the Role of Trealm8nt in Retinal BILY)d Flow and retinal vascular density Understanding atrial arrhythmia in Fabry Disease the developm@nl of patienl-specifiG in silico atrial models Aecess to Effective freatments Representlng you We continue lo represent our patient community al expert meetings, events and committees throughout the ye8r. This year included the WORL[) Symposium in San Diego, USA and the 17th International Symposium on MPS and related diseases in Wtsrzburg, Germany where we hosled an MPS aitways meeting. Our staff have glso represenlad us al international expert meetings. including Fabry International Nebwork IFINI meeting, Inlemalional MPS and Related Diseases Network IIMPSNI board mèeting, Aspire Biosciences meeting and the Pallenl Advisory Group IPAG) meeting. We also 8llended meeting8 that focused on Irealmenl and diagnosis, including the NICE Voluntary and Community Sector (VCS) forum meeting, NICE Highly Specialised Technologies (HSTI meeting, MLD newborn screening steering group and LSD collaboralive. Our support team headed out lo represent us al the Council for Disabled Children, which was primarily foGused on special educational needs and disabilities ISENL)). and at Community Care Live Conference which concentrated on 'solulion focused practice, lo help people move towards the future that they want and to learn what can be done differ8ntty by Lbsing their existing skills. strategies and ideas, rather than focusing on the problem. Cllnical Ilalsons Our head of patient services and clinical liaison has worked with colleagues to further thè goals of the charity delivering approprlale Irealmenl and clinical care. Some highlights inclL¢de: Respondlng lo NICE'S Ihree-year strategy for involvement and engagement Meeting with metabolic teams lo aid caidiac spe¢ifKaliDn plans including patient Information leafflels and training meetings Implementing a pathway for LSD Tran511iDns Launched PPPN (Palienl, Profession81, Partnership Nelworkl with a focus on clinlcal guideline development and LSD patient community survey Responded to NIGE'S consultation on melhods and processes for including NICE technology appraisal recommendations in guidelines Shared information with our LAL D community about the disconlinualion of the appraisal for people with late onsevnon Wolmans form ol the condition Received approval by Scollish Medicines Consortium ISMC) for pegunigalsidase alfa {ERT lor Fabryl for use in adults Following a successful launch in November 2023 of the MPS airway project IMAP}, we weleomed 24 attendees, representing six countries, to the first hybrid meeting In April 2024 in Wurzburg Germany lo discuss complex airways wlh a focus on MPS 11 and MPSIVA. Proposed actions include development of international consensus guidelines, development of an 8mergency airway management plan for pat¢enls and discussion on the palhophysiology of the airways and Irachea in MPS118nd IVA. Generation Study - MPS were approached lo review proposed family information sheets for the MPS conditions included in the study. Our amendments and suggestions were accepted. All Wales Medicines Strategy Group approved Naglazyme for use in Wales to treat MPS Vl Maroleaux- Lamy.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Operating effectlve processes To carry out our work we rely on fundraising and donations. The MPS Soclely receives no goveTnmenl funding and $0 we are really grateful lo our support&rs wilhoul whose generosity we would not be able lo eonlinue lo provide our vital support to families living with the challenge of MPS conditions. Fundraising and donatlons hlghllghts IndlvSdual donatlons We arè very grateful lo our supporters who continue lo donate lo us regularly. In 2024, we received £22,000 from regular donations and payroll giving schemes. We also received over £10,000 from donations and tributes in memory of loved ones and over £7,000 in one-orf donations. Events and challenges We are plaased lo have raised over £87.000 from challenge evènts in 2024. This included a record year for the London Marathon which raised £45.000. Chrlstmas Campalgn This year was our best ever Blg Gfve Christmas Challenge raising over £32,000 for our community Èvents. MPS Awareness Week Our fundraising largel was smashed this year and raised over £28,000. This was generated from 8 varièty of events including our Kind2Mind appeal, schtsols. nurseries and specialisl cenlres taking part in Wear il Blue, cake sales and coffee mornlngs, a pub quiz, a golf Llay, a football presentation, a half marathon, some online fLtndraisers and donations from some very kind individuals 8nd companies. Trusts and phamiaceutical We would like lo extend our sincere thanks lo our key supporters this year who granted fur$ towards our services ancl aclivilies. including the National Lollery Community Fund and The Gosli Foundzllon. Other charitable trusts and foundations who kinLlly gave donations and grants in 2024 include National LDllery Awards forAII. Sir James Knoll Trust, James Tuolor Foundab'on, Stafford Trust, IAfjxamtree Trust, The Big Give Trust. Charf@s & Elspelh Thomas Charitable Trust, Sisters of the Holy Cross Charitable Trust, The W E Dunn Charitable Trust, D'oyly Carte Charitable Trust, Geoff and Flona Squire Foundation, Annie Tranmer Charitable Trust, Ardwick Trust, Sir James Reckill Charity, Clover TrLbsI, Frazer Trust IAKA Joseph Sllong Frazer Trusl), Himal Tanna Charitable Trust, Enkalon Foundation, The John Coales Charitable Trust. Zochonis Charitable Trust, Roland Callingham Foundation, Adinl Charitable Trust, Carringlon Charitable Trust, Baddiley Consolidated Charities, The Camelia Trust, Hugh Fraser Foundation, Pilkinglon Charitable Trust, Bowen Lodge Freemasons. Normanby Charitable Trust. John Avins Trust, Sahdra Charitable Trust, Constance Travis Charitable Trust. Theodore Maxxy Foundation, Sovereign Health Care and Mersey Lodge Freemasons. We were very grateful to have received Iinancial contributions durin9 2024 Irom pharmaceutical companles towards various aspects of our patient support seNices and projects. Ssnofi, Chiesi, Amicus Therapeutics. Takeda UK, PHARMExcel, Biomarin. JCR Pha¥maceLilicals, REGENXBIO, Denali and Orchard Therapeutics have piovided funding lo MPS Society In support of 2024 patient projects bul have had no input into conlenl or oulpul. Ullr8genyx have provided unreslricled funding lo MPS Society in support of 2024 patient projects, Our grants and donation8 from charltabl& trusts and foundations came to £229,327- funds from pharmaceutical companies came to £288,000., and grants from other sources came lo £22,346., giving a lolal of £539,673 f¥om these 50ufGes.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS, REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Fundraising perfom?2nce staff development and support Our staff 2re a cole part of our charity and embracing their knowledge, skills and expertise helps shape the organisalion lo be the best it ¢an be. We use our annual survey ID Spot check where we are as an employer an were delighted that in 2024 most of our slaff195°A+l either agreed or strongly agreed in key areas. We conlinLEe lo invest in our staff, up5killing and offering Ir8ining opportunities. We encourage our stsff lo share their knowledge through bilesize training sessions and in 2024 invested £5.5k on external courses lo refresh safeguarding and support development. Some staff satisfaction highlights., For seveial years we have ofl8red our staff a 2417 employee assistancè programme to support them if they 8r8 experiencing difficult limes. To further enhance our offering we have in 2024 pul 2 team members through a reglstered Mental Health First Alder course lo piovide that extra care and guidan. We plan lo increase this by 8 further 2 team members during 2025. Governance Our trustees meet four limes a year for forrnal board meetings and take it in tums lo att8nd monthly all-slaff meetings. In our staff survey, 91 OA of MPS Society staff said Ih8y have confidence in Ihe trustee board to carry out our charitable mission, Fundralslng The MPS Society Is regislereé wlh the Fundraising Regulator and as such adheres lo their Code of Fundraising Practice. We promote our registration with the regulator on our malerials and website and our Fundraising Promise is available on the website. This promise outlines our commitment lo donors and the public lo uphold the high standards and best practice expècted of those charities registered with the Regulator. We do not have any agreemenls with external fundraising companies or mailing companies for the purposes of fundraising or marketing. We do not buy in rnailing lists for direct marketing, nor do we pass an our supporters, information lo third parties except in ryrcumstances such as registering them for an external event, which by defi'nition has their explicit consent. All of our fundraising activity is managed by the Head of Fundiaising & Communications who lakes responsibilily for any issues arising from those who are fundr8ising on our behalf. As parl of our General Oala Protection Regulation IGDPRI compliance we have ensured that our approaches lo past supporters adhere lo our Data Retention Policy and Privacy Policy and we do not approach anyon8 who would not reasonably expect to hear from us through past engagement with support activity. All communications will include the opportunity lo opt out as well as sl818 31 form of communication is appropriate. Flnancial revlew The MPS Society continues lo raise and receive funds through applications to grant givi bodies to SLJPWrt ils advocacy service and charitable events, including the salaries of the senior advocacy officer and four advocacy officers, as well as special projects. The Society continués to rely heavily throughout the year on ils members and supporters, efforts lo raise income by way of donations and fundraising. Income derived from charitable activities Ibelng grants, events and awareness) lolalled £751,504 in comparison lo £6(12,741 in 2023. Receipts from donations £242,514 compared with £68,062 in 2023. This ye8r legacies of £1.039 were received whereas £133,228 of legacies wsre received in 2023. PS Commercial Limited (trading as Rare Disease Research Partners) is a wholly owned trading subsidiary of the MPS Society. All logistical services related to Patlenl Access lo Clinical Trials and work involving Health Technology Assessments and Patient Reported Outcomes are carried out by MPS Commercial. In 2024, rvips Commercial were able lo donate £150,539 12L123.' £40,387) lo the MPS Society. RDRP relain5 operalional Independen from the charity with ils own Board and CEO. Transactions are undertaken with third parties on a strictly commercial basis and kept wholly separate lo dealings with the charity. Polenlial or actual conflicts arising are regularty reviewed 8nd actively managed in line with the group's conflict of interest policy. Total group income for the year endlng 31 Decembei 2Q124 was £1,934.73512023.. £1,812,981) Compared with 10181 expenditure of £1,862,07212023'. £1,996,359) ¥esulling in a surplus of £72,66312023'. deficit £183,3781. The Iruslees work Glosely with the Senior LeadeTship Team to ensure full cost recovery in all areas of work.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS, REPORT) (CONTINUED> FOR THE YEAR ENDED 31 DECEMBER 2024 Rèsetves pollcy In the year, ending 31 December 2024 the Iruslees revlewed tha charity's reserves policy lo ensure that Yt is flexible enough lo wilhsland the highs and lows of funding. and be robust in ils 8bility lo secure the future of our setvices. In dc*ing so, the trustees agreed lo the established policy whereby the unrestricted funds not commilled or invested in tangible fixed assets {'Ihe free reserves'l held by the charity should be six months of the unrestricted resources. In accoidance with good practice, this is rèviewed each year lo ensure that il fairly refle¢ls the needs of the Society. The review in the current year concluded th31 the CUTrenl policy of alming for reserves of six months of the unreslrlcted resources remains app¥opri8le. Current yeaT our six months core expenditure equates lo £635,883 12023.. £730,696). The level of free reseroes as al 31 Dernber 2024 amounted lo £743,102 12023". £742.3461 which amounts lo 7 months of overall expenditure of the Society. Plans for future periods Our focus in 2024 is lo deliver services lo support the mental health and wellbeing of indiviLluals end famili8s and Continue providing thè resources that have already proved useful. We will analyse the results of our lalesl survey on supporting siblings lo tailor our support lo fil their needs. We will be reviewng our bereavement servic6 and resources and will conlinLFe our work and support to young people through our'Rare Voices. group. Structure, governance and management The Society is controlled by ils goveming document, the Memorandum and Articles ofAsso¢ialion, and conslilules company, limited by guarantee. as defined by the Companies Act 2006. The Soclely was founded in 1982 and was registered with the Charity Commission in 1983 as an unincorporated association, registered charity number 287034. On 2 August 2011 the Society incorporated as a company limited by guarantee with the name 'Sociely for MucopolySaharIde Disezses,. The 8ssels. liabilities and activities of the Society were transferred into this charitable company on 1 November 2011. The trustees, who are also the directors for the purpose of cgmpany law, and who served during the year ané up lo the dale of signature of the financial slalements were.. Katy Brown Sarah Burgess Judith Evans James Garthwaile Professor Simon Heales Professor Derralynn Hughes D M Pallon Phillip Pearson Wilma Robins Fiona Stewart Dr G McKee Prof B G Winchester (Resigned 27 April 20241 IApwJiDled 26 January 2024) Recrultment and appointment of new trustees New Irusl8es are elected by the directSItrUsteeS and Iypic815y hold office for six years.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Org8nisalional slwcture Organlsatlonal structure The Society is governed by a Board of up lo 13 Iruslees known as the Board of directors which meets a minimum of five limes during Ihe year. The day ID day business of the Society is managed by the CEO and is governed by the Articles of Asgocialion. Wider network One Iruslee's first language is Welsh and others live in Scotland. Geographically. the MPS Society provides a UK wide support and individual advocacy service from MPS House based in Amersham in Buckinghamshire. Our employees are central lo providing the support, individual advocacy services and the communication of our cause, while our supporters enable us to achieve our goals and objectives. Rlsk management The trustees have identified the level of risks lo whlch the Society may be exposed and have established the implemenlalion of a Tisk management strategy which comprises quarterly reviews ol the risks the Society may lace, systems and pro¢edures lo miligale these risks and implemenlalion of procedures designed lo report on and minimise any pot8ntial impact on the Sociely should any of thèse risks malerialise. To strengthen governance the Board has established three Sub-committees, that are chaired by the Iruslees wtih permanent representation from member5 of the executive. As detailed below.. Rlsk Sub£ommlltee In 2C$22 a Risk Sub-commiclee was formally established, with clear teTms of refertsnce 8nd guiding principles. Identifying best practice from the Chaiily Commission and using the expert knowledge of selected trustees, a new structure and process was created. Today. the so¢iely benefits from a formalised and structured risk management prOsS using insights from the board and expert opinions from the senior staff leadership team. The risk matrix is refreshed on a monthly basis and shared and discussed at each board meeting. The new risk management matrix allows for the simple comprehension of live risks, the archive of old and enables reporting alignad lo our strategic goals.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS, REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Olhermatten Audlt and Flnallce Sub-commlttee The Audit and Finance Committee undertake a range of duties lo support th8 Executive ar the Board lo understand the overall financial position of the Drganisalion, dgal effectively and proactively with key financial risks and provide the necessary assurancas lo key stakeholders. This work includes bul is nDI limited lo, undertaking a detailed review of the in-year financial position and supporting the management of key risks and opportunities, overseeing the effectiveness ol thè 8nnual budgeling process lo ensure resources are aligned effecliv81y, overseeing the produ¢lion of the annual report and the associated judgements, reviewing and approving key financial policies, overseeing the effeclivenoss cif the Inlernal control environment and ensuring that appropriale audit arrangements are in place and discharged sufficiently. The Committe8 Is chaired by a trustee and 81ways has al least one other Iruslee as 8 permanent member, in addillon lo the Group Chief Executive and Head of Finance. The Committee meet 5 limes per year and reports on progress and matters for allenlion al each full Board meeting. Cllnlcal and SGlentific Advlsory Sub4ommittee ICSACI The aim of the CSAC Commlllee is to ensuTe Ihal the voices of the patient community, the clinical community and the scientific community are involved in the consideration of research. The main function arn= To consSder the importance, scientific merit and polenlial impact of research grant applications made lo the MPS Scsciély. Imien appropriate, external peer review of research grant applications will be sought. To provide a recommendation lo the MPS Board of Trustees on the funding of research grant applicalions made lo the MPS Society. CSAC may also make the MPS Board of Trustees aware of potential future areas of research for support. Advise the Board on polentlal CSAC members. Act collectively or individually as source of advice to the MPS Society on clinic81 or scientific research. The Board ofTrustees wtll appoint a Chair of CSAC who will be a m&mber of the n)ain MPS 80ord of Trustees. The Subcommittee will appoint a Vice-chair from the membership of CSAC. Each member will be appolnled for a term of 3 years and new members may be appoinl@d at any lime. Inductlon and Irolnlng of new trustees New trustees are provided with information about the Society and its work. the role and responsibilitie5 of trustees, and the composition and workings of the Board. They are given copies of the Sociely's governing inslrumenl, a folder of all the Society's policies and the minvles of Ihe18s1 five Board of Iruslees meelings. Trustees are regularly provided wilh the lalesl information on employmenl and charity law. Pay pollcy for key manag&ment personnel The Board of trustees are responsible for defining the Society'8 pay policy and setting the annual salary lor the Chief Executive. Auditor In accord8nce with the company's artides, a resolution proposing that Xeinadin Audit Limited be reappointed as auditor of the MpanY will be pul al a General Mealing. 10-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT (INCLUDING DIRECTORS, REPORT) {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Dlsclosure of Informatlon to audltor Each of the trustees has confimied that there is no infonnation of wh(ch they 8rÈ 8ware lch is relevant lo the audit, bul of which the auditor is unaware. They have further confirmed Ihal they have taken appropriate steps lo identify suth relevant information and lo establish that the 8udilor is aware of such information. The trustees, report was approved by the Board ofTruslees. Judith Trustee D81e'.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES STATEMENT OF TRUSTEES. RESPONSIBILITIES FOR THE YEAR ENDED 31 DECEMBER 2024 The trustees, who are also the directors of Society for Mucopolysaecharide Diseases for the purpose of eompany law, are responsible for preparing the Trustees, Report and the financial slalemenls in accordance with applicable law and United Kingdom Accounting Standards {Uniled Kingdom Generally Acceplerl Accounting Practice}. Company law requires the trustees lo prepare financial slalemenls lor each financial year which give a true 8nd fair view of the slate of affairs of the charity and of the incoming resources and appliGalion of resources, induding the income and expenditure, of the charitable company for that year. In preparing these financial slalemenls, the trustees are required lo.. select suitable accounting policies and then apply them consislenlty., obseNe the methods and principles in the Charities SORP., make judgements and eslimales Ihal ale reasonable and prudent., and prepare the financial slalemenls on the going GonGern basis unless il is inappropriate to prosume that the charily will continue in operation. The trustees are responsible for keeping adequate accounting records that disclose Mrith reasonable accuracy al any lime the financial position of the charity and enable them lo ensure that the financial slalemenls comply with the Companies Act 2006. the Charities and Trustee Investmènt (Scollandl Acl 2005 and the Charities Accounts Iscollandl Regulations 2006. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and del8clion of fraud and other irregularities. f2-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDITOR'S REPORT TO THE MEMBERS OF SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES Oplnlon We have audited the financial slalemenls of Society for Mucopolysaccharide Diseases Ilhe 'charity'l and il's subsidlary for the year ended 31 December 2024 which Gomprise the consolidated statement of financisl aclivilies, the consolidated and charity balan¢e sheet the consolidated slal&menl of cash flows and notes lo the financial slalements. induding signilicgnl accounting policies. The financial reporting framework Ihal has been applied in their preparation 18 appIlble law and United Kingdom Accounting Standards, including Financlal Reporting Standard 102 The Fin8ncl81 Rgporting Standard appIable in the LIK and Republ of Ireland (United Kingdom GenerallyApled Accounting Pra¢lic81- In our opinlon, the financial slalements.. give a true and fair view of the stale of the charitable companys affairs as at 31 December 2024 and of its incoming resources and application of resources, including ils income and expendilure, for the year then ended., have been properly prepared in accA)rdance with United Kingdom Generally Accepted Accounting Practice,. and have been prepared in accordance wth the requirements of the Comp8nies Act 2006, the Charities and Trustee Investment (Scolland) Act 2005 and regulation 8 of the Charities Accounts IScolland} Regulations 2006. BasEs for oplnlon We conducted our audit in accordance wlth International Standards on Auditing IUKI IISAS IUKII 8nd applicable law. Our responsibilities under those standards are further described in the Auditorfs responsibrlilies ft>r Ihe audit of the financial slalemenls section of our report. We are independent of the charity in accordan with the ethical requiremen15 that are relevant lo our audit of Ihe financial slalemenls in the UK, including the FRC'S Elhic81 standard, and we have fulfilled our Dlher ethical responsibilities in accordance with these Tequiremenls. We believe that the audit evidence we have obtained is sufficient and appropri81e lo provide a basis for our opinion. Concluslons relatlng to golng conGern In auditing the financial slalernenls, we have concluded that the Iruslees, ifS8 of the going concem basis of accounting in Ihe preparation of the lin8n¢i81 statements is appropriate. Based on the work we have perlomied, we have not idenlrfied any material uncertainli8s r81aling to events or conditions that, individually or colleclive5y, may cast significant doubl on the charity's ability lo continue as a gosng concern for 8 period of al least twelve months from when the financial slalemenls are 8ulhoris@d for issu8. Our responsibilities and the responslbllilies of th8 Iruslees with respect to going concem are described in the relevant sections of this report. other Information The other information compris8s the information included in the annual report other than the financial slalemenls and our audilorfs report Ihereon, The Iruslees are responsible for the other information conlaineLI wlhin the annu¥ report. Our opinion on the finanaal slalemenls does not cover the olher information and, except lo the exlenl otheiSe explici15y slated in our report, we do not express any form ol assurance conclusion Iheraon. Our responsibility is lo read the other infomialion and, in doing so, ¢onsidÈr uthether the other information is materially inconsistent with the finenci81 statements or our knoedge obtained in the course of the audit. or olhemise appears to be materially misstated. If we identify such m8lari81 inconsistencies or apparent material misslalemenls, we are requirerl lo determine whether this gives rise lo a material misslalemenl in the financial slalemenls themselves. If. based on the WOTk we have performed, we conclude that there is a tll8leri81 misslalemenl of this other information, w& ar8 required lo report that fact. We have nothing lo report in Ihls regard. 13-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDITOR'S REPORT (CONTINUED) TO THE MEMBERS OF SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES Opinlons on other matters prescribed by the Companles Act 2006 In our opinion, based on the WOFk undertaken in the couise of our audit: the information given in the trustees, report for the financial year for whlch the financial slalemenls ale prepared. which includes the directors, report prepartsd for the purwses of company law, is consistent with the financial slalemenls.. and the directors, report included within the Iruslees. report has been prepared in accordance urilh applicable legal requirements. Matters on which we are required to report by exceptlon In the light of th8 knowledg8 and understanding of the charity and ils environment obtained in the course of the audit, we have not ideFilified material mis51alements Iri the directors. report included within the trustees, report. We have nothing lo report in respect of the following mallers in relation lo which the Companles Act 20 and the Charities Accounts (Scollandl Regulations 2006 require us lo report to you if, in OLtr opinion.. adequate and proper accounting records have not been kept, or returns adequate for our audit have rsot been received from branches not visited by us,. or the financial slalemenls are not in agre8menl with the accounting records 8nd returns.. or certain disdosures DI Iruslees. remuneration specif¢ed by law are not made., or we have not received all the information and exk4analions we require for our audit., or the trustees werè not enlilled to prepar@ the financial sl8lemenls in accordance with the small companies regime and lake advantage of the small companies, exemptions in preparing the Iruslees, report and from the requirement lo piepare a strategic report. Responsiblllties of trustees As explained more fully in the slalemenl of Iruslees. respor)sibil(ties, the Iruslees, who are 81s0 the directors of the charity for the purpose of company law, are responsible for the preparation of the financial slalemenls and for being satisfied that they give a true and fair view, and for such internal control as the trustees d@termin@ is necessary lo enable the preparation of financial statements that are free from material misstatement. whether due lo fraud or error. In preparing the financial statements. the trustees are responsible for assessing the charity's ability to continue as a going concern, disdosing, as applicable, matters related lo going concern and using the going Concern basis of accounting unless the trustees either Intend lo liquidate the charitable company ow lo cease operations, or have no realistic allernalive bul to do sg. Audltor's re5ponsibillties for the audit of the financlal statements We have been appointed as auditor under Section 44111{cl of the Charities and Trustee Investment (Scollandl Act 2005 and under the Companies Act 2006 and report in accordance nth the Acts and relevant regulations made or having effect Ihereunder. Our objectives are lo obtain reasonable assurance about whether the financial slalemenls as a whole are free from malerigl misslalemenl, whelh&r due lo fraud or error, and lo issue an auditor's report that includes our opinion. Rea80nable assurance is a high level of assurance bul is not a guarantee that an audit conducted in accordance with ISAS (Ulq will always delect a material misslatemenl when il oxisls. Missl8lements can arise trom fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected lo influence the economic decisions of users taken on the basis of these financial slal8monls. The extent lo which our procedures are Bapable of detecting irreyularilies, including fraud. is detailed below. 14
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDITOR'S REPORT (CONTINUED) TO THE MEMBERS OF SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES Enquiries of management and those Gharged wllh governance were held in order lo identify 8ny laws and regulation5 that could be expected to havè a material impact on the financial slalements. Throughout the audil, the team were updated with the outcomes of these enquiries including consideration as lo where and how fraud may occur in the ¢harilabFe company and the group. No instan$ of material non-compliance weie identified, although the prospect ol detecting irregularities, including fraud, is Inherent difficult, This is due lo., difficulty in delecting irregularities,. limits imposed by the effectiveness of the entity's controls.. and the n8lure, timing and extent of the audit procedures performed. Irregularities as a result of fraud are inherently more difficult lo d8lect than those that re5ulling from error. Despite the audil has being planned and performed in accordance with ISAS IUKI, there is an unavoidable risk that material misslalemenls may not be delecled. A further description of our responsibilities is available on the Financial Reporting CounGiI's website al.. hllps'.11 w.frc.org.uklaudilorsresponsibililies. This description forms part of our auditor's report. Us8 of our report This report is made solely to the charitable comp8ny's members, as a body, in accordance wlh Chapter 3 of Part 16 of the Companies Act 2006, and lo the charitable company's trustees. as a body. in sccordance with Regulation 10 of the Charities Accounts (Scotlandl Regulations 2006. Our audit work has been undertaken so that we might slate to the charitable company's members and Iruslees those matters we are required lo slate lo Ihem in an auditor's report and for no other purpose. To the fLJllesl extent permitted by law. we do not accept or assume responsibility lo 8nyone other than the charitable company. the ch8rilabl& company's members as a body and the charitable ¢ompan*s Iruslees a$ a body. for our audit work. for this report, or for the opinions we have formed. Helen Furlong FCCA I nlor Statutory Auditorl For and on behalf of Xeinadin Audit Limited, SlaluloryAuditor Chartered Accountants 46 Hamilton Square Birk&nhead Wirral Merseyside CH415AR 15-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 DECEMBER 2024 Unrestrlcted Restrlcted funds funds 2024 2024 Total Unrestrlcted Restricted fund$ funds 2023 2023 Total 2Q24 2023 Notes Income from: Donations and legaaes Charitsble activities Advoc8¢y SUPPOrt Psychological support MPS awareness Family support and special evenls 243,553 243.553 201,290 201,290 286.727 425,6e5 15,000 712,392 15,000 278.845 247,396 15,000 20,OOQ 526,241 15.000 20.000 24,112 24,112 41,5LIO 41,500 Other trading aclivitles Investments 864,051 75,627 864,051 75,627 958,230 50,720 958,230 50,720 Totsl Income 1.489,958 464,777 1,934.735 1,489,085 323.896 1,812,981 Expendlture on- Raisin funds Fundraising and publicity Commercial tradng activity 170,260 170,260 158,534 158,534 458,391 456,391 612,973 612,973 626,851 626,651 771.507 771,5L17 Charitable aclwities Advocacy services & Member events Awareness raising Trading activities- Patients support Research grants 244.568 176.451 502,002 746,570 176,451 355,289 184,522 359.363 714,652 184,522 230,466 81.934 230,466 81,934 274,923 50,755 274,923 50,755 Total charltable expenditure 733.419 502,002 1,235,421 865,489 359,363 1,224,852 Total expendlture 1,360,070 502,002 1,862,072 1,63e,996 359,363 1,996,359 16-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES {CONTINUED) INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 DECEMBER 2024 UnreslriGted Restrlcted funds fynds 2024 2024 Total Unrestricted Restrlcted funds funds 2023 2023 Total 2024 2023 Notes Net Incomellexpendlturel and movemFlIt In funds 109.888 137,2251 72,663 1147,9111 135,4671 1183,3781 Reconciliatlon of funds: Fund bal8nces al 1 January 2024 2,143,805 202.145 2,345,950 2.291,716 237,612 2.529,328 Fund balances at 31 Decembfrr 2024 2.253,693 164,920 2,418,613 2.143,805 202,145 2,345,950 The statement of financial a¢lNilies includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities. 17-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED BALANCE SHEET AS AT31 DECEMBER 2024 2024 2023 Notes Flxed assets Tangible assets Investments 976,585 859,525 1,QOS,049 628,497 18 1.836,110 1,634,546 Current assets Debtors Cash al bank and in hand 20 337,461 1,183,776 540,268 731,411 1,521,237 1,271,679 Creditors: amounts falllng due wlthlfi one year 21 1938,7341 1580,2751 Net current assots 582,503 711.404 Total assets less current Ilabllltles 2,418,613 2,345,950 The funds of the charlty Reslricled income funds Unreslricled funds 23 24 184,920 2,253,693 202,145 2.143.805 2,418,613 2.345.950 The financial 81atemenls were approved by the Iruslees on Evans Trustee Company registration numbsr 07726882 IEngland and Walosl 18
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CHARITABLE COMPANY BALANCE SHEET AS AT 31 DECEMBER 2024 2024 2023 Notes Flxed assets Tangible assets Investments 17 18 973,851 859,527 1.002,408 628,499 1,833,378 1,630,907 Current ass&ts Debtors Cash al bank and in hand 20 288,959 546,001 256.749 553,229 834,960 809,978 Credltors: amounts falllng due withln one year 21 {249.7251 194,9351 Nel current assets 585,235 715,043 Total assets lèss currant liabilitios 2,418,613 2,345,950 The funds of the charlty Reslricled income funds Unrestricted funds 23 24 164,920 2,253,693 202,145 2,143.805 2,418,613 2,345.950 Judlth Eva TrustÈe Company regislrallon number 07726882 (England and Wales) 19-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS FOR THE YEAR ENDED 31 DECEMBER 2024 2024 2023 Notes Cash flows from operatlng actlvltles Cash generated froml{absorbed by} operations 27 612,426 {289,575} Investlng actlvlties Purchase of tangible fixed assets Proceeds trom disposal of investments Inveslinenl income received (4,66LI) (231,028) 75,627 {6,263) 1311,371} 50,720 Net cash used In investing actlvities 116Q,0611 (266,9141 Net cash generated from flnanclng actlvltles Net Increaselldecreasel In cash and cash equlvalenls 452,365 (5S6,4891 Cash and cash equivalents al beginnlng of year 731,411 1,287.900 Cash and cash equlval8nts al end of year 1,f83,776 731,411 20-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024 Accountlng pollcles Charlty Informatlon Society for Mucopolysaccharide Diseases is a private company limited by guarantee incorporated in England and Wales. The registered office is MPS House. Replon Place, While Lion Road, Amersham, Buckinghamshire, HP7 9LP. 1.1 Accountlng conventlon The financial slalemenls have been prepared In accor(Jance with the charills goveming document, the Companies Act 2006, the Charities and Trustee Investment (Scollandl Act 2005, the Charities Accounts Iscollandl Regulations 2006, FRS 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland" and the Charities SORP Accounting and Reporting by Charities.. Slalemenl ol Recommended Practice applicable lo charities prepaiing their accounts in accoidance with the Financial Reporting Standard applicable in the UK and Republic of Ireland {FRS 102)" The Charity is a Public Benefit Enlily as defined by FRS 102. The financial slalements are prepared in sterling. which is the functional currency of the charty. Monetary amounts in these financial statements are rounded lo the nearest £. The financial slalemenls hav9 been PTepared under the historical cost convention, modified lo includè the revaluation of certain finanual instruments al f8ir value. The principal accounting PDliaes adopted are sel out belDW. The charitable company is 2 quallfying entity for the purposes of FRS 102, being a member of a group where the parent of that group prepares publicly available consolidated Iinanci81 slalemenls, Including this company, which are intended lo give a true and lair view of the assets, liabilities, financial position and profil or loss of the group. The chaTilable company has therefore taken advantage ol exemptions from the followng disclosure requiremenls for parent company infotmalion presented within the consolidat8d financial statomenls: Sectton 7 'Slalemenl ol Cash Flows.: Presentation of a statement of cash flow and relalad notes and disclosures., Section 11 '8asic Financlal Inslrumenls. and Section 12 '01her Financial Inslrumethl Issues,: Carrying amounts, interest incomelexpense and net g8insllosses for each category of financial instrument,. basis ol determining fair values.. details of collateral, loan defaults or breaches, details of hedges, hedging fair value changes reccignised in profil or10ss and in other comprehensive income Section 33'Relaled Party Disclosures Compensallon for key management personnel. 1.2 Golng concern The Irusle8s have considered the futur8 trading of the charitable company and the group and have prepared cash fiow forecasts ft)r a period of 12 months from the dale of these financial slatemenls. Al the lime of approving the financial statements, the Iruslees have 8 reasonable expectation that the charilablB company and group has adequate resourc&s ID continue in operational existence for the foreseeable future. Thus the trustees continue lo adopt the going concern basis of accounting in preparing the financial slalemenls. 1.3 Charltable funds The finanaal statements distinguish between reslricled and unrestricted funds. The former is received fiom donors and is subject lo reslriclions on the purposes for which they may be used. Unreslricled funds are those where there are no axt8rnally imposed reslriclions. They include those funds freely available lo Ihe charity for expenditure or appioprialion lo reserves for internally designated purposes, such as research programmes. Designated funds comprise funds which have bèen s61 aside at tha discretion of the Iiuslees for specific purposes. The purposes and uses of the designated funds are set out in the notes lo the financial slalemenls. 21
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINtJED} FOR THE YEAR ENDED 31 DECEMBER 2024 Accountlng policlès Icontlnuedl 1.4 Income Income Is recognised when tha charity is legally enlilled lo il after any performance conditions have been mel. the amounts can be measured reliably, and it is probablé that income will be received. Cash donations are recognised on receipt. Other donations are recognised once the charity has been nolif18d of the donation, unless performance conditions require cleferral of the amount. Income lax recoverable in relation lo donations received under GiftAid or deeds of covenant is ¥ecognised al the lime of the donation. Legacies are Tecognised on receipt or othenlSe if the charity has been notsfied of an Impending distribution. the amount is known, and receipt is expected. If the 8mounl is not known. the legacy is Irealed as a conlingenl asset. Income is slated after liade discounts and other sales taxes. Voluntary Income Voluntary income. which is reiVed by way of reslricled and unreslricled donations, gifts, legacies ar¢d special fund raislng evenls, is induded in the slalemenl of financial activities in full as soon as il is received. Grants recelvable Grants are recognised when the charity has enlillemenl lo the funds, any performance conditions altaGhed lo the items of income have been met, il is probable that lh8 income will be received and Ihe amount c8n be measured reliably. Legacles Legacy income is recognised when it is certain lo be fecetved and can be measured with suflicienl rellabilily. Donatlons In klnd The MPS Society appreciates the level of active support il receives from volunteers who spend a considerable amount of lime supporting our objectives, fund raising and administering our aclivilies. Vlfilhoul this volunlttry support the MPS Society would incur considerable additSonal expense. It is not considered practicable for the purposes of these financial slalements lo pul a monetary vale on this suppott", the Iruslees can bul offer Ihelr heartfelt gratitude to all ils volunlee¥s and supporters. Gifts and intBngible Income that can be quantified are recognised in the slalemenl of financial activities. Investment Income Investment income comprises gill, building society and bank interest receFvable. This is included in the income and expenditure accounl in the year in which il is received. Income from other tradlng activltles This in¢ome is from tho trading subsidiary MPS Commeraal Limited. This comprisès pali8nl management fees and survey research. Income is reGognised at the falr value of the consideration receive(l or receivable for goods and services provided in the normal course of business. 1.6 Expendlture Expenditure is accounted for or) an accru8ls basis and has been classified under headings that aggregate all eosl related lo the category. Where costs Gannol be directly allribuled to particular headings they have been allocated to activities on a basis consistent with the use ot resources. Grants payable are included in the slalemenl of financjal activities in the year in which they relate. Grants offered subject lo conditions which have not been met al th& ye2rend dale are noted as a commitment bul not accrued as expenditure.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Accountlng pollcles Icontlnuedl Support costs are those functions that as31sI the work of the charity bul do not directly undertake charitable activities. Support costs include Head Office costs, finance. personnel, payroll and govornance costs. Governance costs are those incurred in connection with adminislralion of the charity and compliance with conslilulional and slalulory requirements. These are apportioned based on staff numbers. Pas5-through costs and reimbursemÈnts Clinical trial expenditure and reimbursements are not induded In the financi81 slalemenls. Expenditure is incurred by MPS Commercial Limited on behalf of patients particlpaling in clini¢al trials with costs being reimbursed by the pharmaceutical companies. MPS Commercial Limited acts as an agent on behalf of the pharmatIcal companies (under guidance of FRS 102 section 23.41. 1.6 Tanglble flxed assets Tangible fixed assets are initially measured al cost and subsequently measured al cost or valuation, nel of depreciation and any impairment losses. Depreciation is recognised so as lo write off the cost or valuation of assets less their residu81 values over their Ltseful lives on the following bases.. Freehold land and buildings Computers and equipmenl Straight line over 50 years Slraighl line over 34 years The gain or105s arising on the disposal of an asset is determined as the difference between the sale proceeds and the carrying value of the asset. and 18 recognised in Ihe slalemenl of financial aclivilies. 1.7 Flxed a55et Investments A subsidiary is an entity controlled by the charity. Investments in subsidiaries are v8lued al cost less provision for irnpairmenl. Investment assets arising from donate valuables are included al market value. These assels are valued al open market value 81 the date of donation and subsequently revalued lo open market value as appropriate. Fixed asset Inve8lmenls in bonds are initially me8sur8d at transaction price excluding Iransaction costs, and are SLrbsequenlly measured al fair value at each reporting dale. Changes in fair value 8re recognised in nel incomellexpendilurel for the year. Transaction costs are èxpensed as incurred. 1.8 Impalrmenl of fixed assets Al each reporting end date, the chaiily reviews the carying amounts of ils langiblo assets lo determine whelher there is any indication that those 8ssets have suffered an impairmenl loss. If any such indication exists, the rectsverable amount uf the asset i¥ estimated in order lo determine the exlenl of the impairment loss lif 2nyl. 1.9 Cash and cash equlvalents Cash and cash equivalents indude c88h in hand, deposils held al call wlh banks, other short-temi liquid investrnenls with original rnalurilies of three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in current liabilities, 23-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Accountlng pollcies Icontlnuedl 1.10 Financlal In5trument$ The charity has elected to apply the provisions of Section 11 'Basic Financial InslNmenls' and Section 12 'Olher Financial Inslrumenls158ues' of FRS 102 to all of ils financial instruments. Financial instruments are recognised in the charitls balance sheet when the charity becomes p8rty to the onlraclual provisions of the in51rumenl. Financial assets and liabilities are offset, with the nel 2mounls presenled in the financial stslemenls, when there is a legally enforceable right to sel off the recognised amounts and there is an intention to settle on a nel basis or lo realise the assel and settle the liability simulianeously. BasiTC flnancial assets Basic financial assÈls. which include debtors and cash and bank balances, are initially measured al transaction price including Irans8clion costs and are subsequenlly Carried at amortised cost using the effective interest melhDd unless the arrangement conslilules J financing Iransaclion. where the transaction is rneasured al (he present valu8 of the future receipts discounted al a market rate of interest. Finanaal assets classified as receivable within one year are not amortised. Basic financial liabllltles Basic financial li8bililies, including creditors and bank loans are initially recognised al transaction price unless the arrangeEMenl conslilules a financing IransaGlion. where the debt in51rurnenl is measLtred al the present valu8 of the future payments discounted al 8 m8rkel ral8 of interest. Flnancial liabi1ilies classified as payable within one year are not amartised. Debt inslfumenls are subsequently carried al amortised cost, using the effective itbleresl rale method. Tiade cxadilors are obligations lo pay for goods or setvicos that have been acquired in the ordinary course of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one yeaf or less. If not. they are presented as non.currenl lialx'lilies. Trade creditors are recognised initially al transaction price and subsequently measured al amDrtised cost using Ihe effective interest method. Derecognillon of financlal liabilities Financial liabilities are derecognised when the ¢harily's conlractU81 obligations expire or are discharged or cancelled. 1.11 Taxatlon ThÈ Society as a registered charity is not considered lo be liable lo taxation. VAT incurrets is not recoverable and is included In relevant expenditure. 1.12 Retlrement benafils The So¢iety conlribules 5% of gross salary to individu81 amployees, per¢sion Schemes. Contributions payable lo individual defined contribution pension schemes are tharged lo the statement of financial activities in the period lo whith they ielate. -24-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 310ECEMBER 2024 Crltlcal accountlng estimates and judgemènts In th8 8pplicalion of the charity's accounting Policies. the Iruslees are required lo make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sourcès. The eslimales and associated assumptions are based on historic81 Èxperience and other factors that are considered lo bè relevant. Actual results may diff8r from these estimates. The eslimales and underlying assumptions are rèviewed on an ongoing basis. Revislons lo accounting e51imales are recognised in the pertod in which the eslimale is revised where the revision affects only Ihat period, or in the period of ihe revision 2nd future periods where the revision affects both current and future periods. Legal status The charity is a company limited by guaianlee. The members of the company are the Iruslees named on pgge 1. In the event ol the charity being wound up, the liability in respect of the guarantee is limited lo £1 per member of the charity. Incomg from donatlons and legacles Unrestrlcted funds 2024 Unrestrlcted funds 2023 Donations and gifts Legacies 242,514 1,039 68,062 133,228 243.553 201,290 25-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2024 Income from charltable actlvltles Unrestrlcted Restrfcted funds funds 2024 2024 Total Unrestricted Restrlct8d funds funds 2023 2023 Total 2024 2023 Advocacy support Gr8nls receivable Mational Lottery community fund5 286,727 319,730 806,457 278,845 169,800 448,645 105,935 105,935 77.596 77,596 Psychologlcal support Grants receivable 15,000 15,000 15,000 15,000 MPS awareness Grants reeeivable 20,000 20,000 Famlly SUPPDrt And Special events Grants receivable 24.112 24,112 41,500 41,500 286,727 464,777 751,504 278,845 323,896 02,741 Income from other tradlng activitles Unrestricted Unrestrjcted funds funds 2024 2023 Survey income in subsidiary Management fees in subsidiary 317.546 546.5Q5 479,497 478,733 Other trading activities e64,Q51 958,230 Income from Investments Unrestrlcted Unrestrlcted funds funds 2024 2023 RenlAI income Inl&resl receivable 29,917 45,710 29,917 20,803 75.627 50,72Q .26-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Expendllure on ralslng funds Unrestricted Unrestrlcted funds funds 2024 2023 Fundraising and publicity Grant con5ull8ncy costs Fundraising expenses Staff costs Depreciation and impairment Support costs 4,337 14,626 I Cb8,697 6,370 38,230 6,026 15,475 105,747 6,404 24,882 170,280 158.534 Trading costs Survey Gosts Sl2ff costs Depreciation and impairment Support costs 88,953 345,699 2,276 39,463 41,936 412,384 2.456 156.197 456,391 612,973 Total costs 628,651 771,507 -27-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Expendlture on charitable actlvltl8S Advocacy Awareness Trading R8S8arch sèrvlcos & ralsing actlvltles grants member Patients events support 2024 2024 Total 2024 2024 2024 Direct costs staff costs Depreciation and impaim)enl Communication Communication MPS awareness Donation5 and Iribules in memory Patient wolfare gifts 395,134 15,924 140,403 7,033 101.710 4.777 230,466 727,310 20,701 140,403 10,692 10,216 1,079 33 3,659 10.216 1,079 33 559,606 120,362 230,466 910,434 Grant funding of aclniilies (see note 101 81.934 81,934 Shara of support and gov¢rnance costs lsee note 111 Support 85,094 Governance 101,870 25,528 30,561 11 Ll,622 132,431 746.570 176,451 230,466 81.934 1,235,421 Analysis by fund Unreslricled funds ReslriGled funds 244.568 502.002 176.451 230,466 81.934 733,419 502,002 746,570 176,451 230,46S 81,934 1,235,421 28-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Expendlture on Gharltsble actlvitles {Continupdl Prevlous year. Advocacy Awareness Tradlng Research seNlcès & ralslng activities grants membèr Patlents ¢vonts support 2023 2023 Total 2023 2023 2023 Dlrect costs Staff costs Depreciation and impairment Communication Communication MPS awareness Donations and Iribules in memory Patient welfare gifts 412,202 16.009 133,157 2,150 118,862 4,802 274,923 805,987 20,811 133,157 17,519 311 429 111 15.369 311 429 564,058 139.344 274.923 978,325 Grant ftjndlng of activities (see note 101 50,755 50,755 Share of support and governance Gosts (see note 111 Support 57,075 Governance 93,519 17,122 28,J56 74,197 121,575 714,652 184.522 274,923 50,755 1,224,852 Analy$ls by fund Unreslricled funds Restricted fund8 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 10 Grants payable In 2024, grants were awarded for six projects whlch covered topics such as the link between physlcal acllvity and mental health in adults with Fabry disease, and th8 dev&lopmenl of a mathematical model lo caloulale the risk of worsenlng airway and lung problems in people wlh MPS IVA Morquio, Grants payable costs have all been allribuled lo chaiilable aclivily expenditure. -29-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 11 Support costs allocated to actlvltles 2024 2023 Recruilmenl and Irainlng costs General ottice expenses Insurance Subscriptions Staff welfare Computer expenses Bank charges Bad debts Travel and subsislance Consull8ncy expenses Governance costs 6,067 88.100 14,352 2,634 14,098 30,882 2,861 8,559 62,072 13,895 2,472 14,875 32,764 5,149 100,OOfl 11,988 20,163 104,914 17,882 7,129 134,741 318,748 376,851 Analysed between: Fundraising Advocacy services & member events Awareness raising 75,693 186,964 56,089 181,079 150,5g4 45,178 318,746 376.851 2024 2023 Governance costs wmprise: Staff costs Depreciation Audit fees Legal and professional Managemonl costs 56,247 4,777 9,438 3,923 60,356 54,873 4,803 8,353 6,193 30,692 134,741 104,914 12 Net mov8menl In funds 2024 2023 The nel movement in fijnds is slated after charyingllcredlllngl.. Fees payable for the audit of the charily's financial $181emenls Depreciation of owned tangible fixed assets 9,438 34,124 8,353 34,475 -30-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 13 Employeas The average monthly number of employees during the year was-. 202 Number 2023 Number Chief executives Administration Advice, informalion & support Commercial trading operations 14 13 Total 32 37 Employment costs 2024 2023 )ntages and galaries Social se¢urily costs other pension costs 1,082,478 104.393 51,082 1.215,268 104,567 59,156 1,237,953 1.378,991 The number of emplt)yees whose annual remunerallon was more than £60,000 is as follows.. 2024 Number 2023 Number £90,001 £100,000 £100,001 - £110,000 Remunèration of key management personnel The key management personnel of the group, eompiise the Iruslees, the group chief exectjlive officer, head of patient services, head of fundraising and head of finance. The total employee benefits ol the key rnanagemènl personnel were £285,063 12023.. £334,300). The highest paid employee of the charity and the group had accrued £5.76912023.' £5,769) in employer penslon conlribulions, 14 Taxatlon The charity is exempl from laxalion on ils activitie8 because all ils income is applied for charitable purposes. 15 Trust065 No Iruslee or relal8d person reiVed any remuneration from the Society in respect of Services as an 8mployee of the enlily. All trustees are reimbursed for their expenses or expenses are paid for by the ¢harily on behalf of Irusl@8S, which are necessarily incurred in 811ending management commillee meetings and in performing their dulles as Iruslees. The Chief Executive Officer of the Soaety approves the reimbursement of such expenses. In 2024 these lolalled £9,432 {2023'. £2,321) for all trustees. 31
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 16 MPS Commerclal Llmlted The subsidiary. MPS Commercial Llmlled, had incoming resources of £911,722 (2C123 £958.205) and outgoing resourcès of £761,23212023 £917,818) leaving 8 Surplus of £150,53912023 £40,357) which was gifted to the Society for Mucopolysaccharide Diseases. 17 Tanglble Flxed Assets - Group Freehold land Cornwrters and bulldlng8and equipment Total Cost Al 1 January 2024 Addillon8 1,435,38S 76,4Q1 4,660 1,511,79Ql 4,660 At 31 December 2024 1,435,389 81,061 1,516,450 Dapre¢lation and Smpalrment Al 1 Jan4Jary 2024 Depreciation Charged in the year 436,993 28,708 68.748 5,416 505,741 34.124 At 31 December 2024 465,701 74,163 539,864 Carrylng amount Al 31 December 2024 969,687 6.898 976,585 Al 31 December 2Q23 998,396 7,653 1,006,049 Tanglblè Fixed Assets - Charity Freehold lond ComputskE and bulldlngsand Èqulpment Total Cost Al 1 January 2024 Additions 1,435,389 60,328 1,495,717 4,660 4,660 Al 31 December 2024 1,435.388 64,988 1,516.449 Depreclatlon and impalrment Al 1 January 2024 Depreciation charg@d in the year 436,993 28,708 56,315 3.140 493,308 31,848 Al 31 December 2024 465,701 59,455 525,156 Carylng amount At 31 December 2024 989,687 4,163 973,850 Al 31 December 2023 998,396 4,012 1,002,408 32-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEfvIENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 18 Flxed assèt investments- Group Donatsd Bank bonds lewellery Shares In subsldlarles Total Cost or valuation Al 1 Jantsary2024 & 31 December 2024 6,100 622,397 628,497 Carrylng amount Al 31 December 2024 6,100 622,397 628,497 At 31 December 2023 e,100 622,397 628,497 Flxed asset Investments - Charlty Donated Bank bonds jewellery Shares In sub5idlarie5 Total Cost or voluatlon Al 1 January 2024 & 31 December 2024 6,100 622,397 628,499 Carrying amount Al 31 December 2024 6.100 622,397 628.499 Al 31 December 2023 6,100 622,397 628,499 There were no investment assets outside the UK. Donated lewellery The donated jewellery is slated al the valuation Zrrived al by DJ Warner Jeweller8 in 2011. The valuers are independent of the Society. The trustees contlnue lo use this basis of valuation. Investment in bank bonds The Society for Mucopolysaccharide Diseases reinvested £622,397 in fixed business bonds, which are due to mature within less than one year. Of the £822,397 invesl&d, £2JO,000 has been allocated lo the designated fund, £150,000 for the ReSe3h Fund and £50,000 for the Sewice Development Fund. 33-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUEDI FOR THE YEAR ENDED 31 DECEMBER 2024 19 Subsldlarles Details of the charills subsidiaries al 31 December 2024 8re as follows.. Namo of undertaklng Class of °A Held shares held Dlrect Indlrect MPS Commerc(al Limited Rare Dlsease Research Partners Limited Ordinary £1 Ordinary £1 fjoo.00 100.00 The aggregate ¢apit81 and reserves and the result for the year of 8ubsidiar¢es excluded from ¢onsolidalion was as followts.. Name of undertaking ProfiUILossl Capital and Reserve MPS Commercial Limited Rare Disease Research Partners Limited The wholly owned subsidiaries,. MPS Commerclal Limlled and Rare Disease Research Partn&rs Limited and trading and dormant respectively. Both subsidiaries are incorporated in England and Wales, and have the registered offi¢& of MPS House, Replon Place, lthite Lion Road, Amersham, Buthinghamshire, HP7 9LP. All profits generated by subsidiaries are distributed via Gift lo the parent charity under a Deed of Coven8nl. 20 Debtors - Group 2024 2023 Amounts falllng due wlthln one year: Trade debtors Other debtors Prepayments and accrued income 276,939 499,760 1.435 39.073 59,88f 337,461 540,288 Dabtors . Charity 2024 2023 Amounts falllng due wlthln one year: Tr8de debtors Amounts Dwed by group undertaklngs Other debtors Prepayments and accrued income 15,601 250,539 24 22.795 1,470 240.386 1,435 13,458 288,959 256,749 -34-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 21 Credltors: amounts falllng due wlthln one year- Group 2024 2023 Other laxalion and social securily Trade credllc)rs Other creditors Accru81s gnd deferred income 23,202 27,892 411,369 476,271 30,403 19,429 245,495 264,948 938,734 560,275 Creditors: amounts falllng due within one year- Charlty 2024 2023 Trade creditors Other Creditors Accruals and deferred income 6,362 14,236 229,127 5,856 13,586 75.4S3 249,725 94,935 Included within other crediloTS is deferrtsd income of £466,334 (2023.. £253,178). Deferred income is recognised in MPS Commercial whère administration fees for patients are spread accordingly with their associated period. Deferred income in The Society For Mucopolysaccharide Diseases is recognised in respect of grants where the performance agreement iuns aGross mullipSe periods. All of the deferred income recorded in 2023 has been subsequently recognised as income in 2024. 22 Retlrement benefit schemès 2024 2023 Deflned contrlbutlon schemes Charge lo profil or loss in respect of defined contribution schemes 51,082 59.156 The charity operates a defined contribution pension scheme for all qualifying employees. The assets of the scheme are held separately from Inose of the charity in an independently administered fund. Al 31 December 2024 the amounts outstanding were £7.05512023 £6,510}, -35-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINLIED) FOR THE YEAR ENDED 31 DECEMBER 2024 23 Restrlcted funds- Group and Charlty The restricted funds of the charity comprise the unexpended balances of donations and grants held on trust subject lo specific conditions by donors as to how they may be used, At 1 JanLEary 2024 Incomlng resources Re$ource8 expended At31 December 2024 MPS re81ricled fund LSD reslricled fund Research reslricled fund 76,928 15.340 109.877 464,777 (496,1491 15,8531 45,556 9,487 109,877 202,145 464,777 1502,0021 164,920 Prevlous year: At 1 January 2023 Incomlng Resources resources èxpended At31 December 2023 MPS restricted fund LSD reslricled fund Research restricted fund 116,965 11,270 109,377 312,246 11,150 500 {352,2831 17,0801 76,928 15,340 1 C19,877 237,612 323,896 1359,3631 202,145 237.612 323,896 1359.3631 202,145 Restrlcted funds MPS restricted fund- to SLJPPOrt Disease trQkIetS and Advocacy servIs. LSD reslricled fund- lo support Lysosomal Slorage Disease related meetiS and conferences. Research restricted fund- lo support MPS research related projeds. .36.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS {CONTINUED> FOR THE YEAR ENDED 31 DECEMBER 2024 24 Unrestrfcted funds- Group The unrestricted funds of thè charity comprise the unexpended balances of donations and grants which are not Subject lo specific conditions by donors and grantors as lo how they may be used. Thése include designated funds which have bean set asicle out of unrestricted funds by the Iiuslees for specific purposes. At 1 January 2024 Incoming Resourc8S resources expended Transfers At31 December 2024 Generable charitable fund Property fund Research fund Service development fund Building rÈfurbishment fund Christine Lavery rnemorial fund 750,000 998,395 97,174 98,236 100,000 100,000 1,380,262 11,214,8281 128,708) 181.93d) 1165,334) 750,000 969,887 104,936 263.570 65,500 100.000 89,696 165,334 134,5001 2,143,805 1,469,958 11.360,070} 2,253,693 Prevlous year: At 1 January 2023 IncomSng Resources resources expended Tran$f8rs At31 December 2023 Generable charitablè fund Propetyfund Research fund Service development fijnd Buildlng refurbishment fund Christine Lavery memori81 fund 750,000 I,Q27,103 147,929 186,684 100,0LIO I00,OLIO 1,489,085 {1,489,0851 (28,7081 (50,7551 {68,4481 750,000 998,395 97,174 98,236 1 JO,QOO 100,000 2,291,716 1,489,085 11,636,g961 2,143,805 2,291.716 1,489,085 1fj,636,9961 2.143,805 37-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 24 Unrestrlcted funds - Group Icontlnuedl Unrestrlcted funds - Charlty At 1 January 2024 Incomlng rasources Resources expended Transfers At31 DeGembgr 2024 Generable charitable fund Property fund Research fund Service development fund Building refurbishment lund Christine Lavery memorial fund General funds 750,000 998,395 97,174 98,236 100,000 100,000 603,709 1438.3751 128,7081 181,9341 1165,334} 750,000 969,687 104,936 263,570 65,500 100,000 89,696 165,334 134.5001 2.143,805 693,405 1583,5171 2,253,693 Prevlous year.. At 1 January 2023 Incomlng resources R8sourc8S expended Transfers At31 December 2023 Generable charitable fund Property fund Research fund Service development fund Building refurbishment fund Chrisline Lavery memoiial fund General funds 750,000 1,027,103 147,929 166,684 100,000 100,000 925,085 1925,0851 128,7081 150,7551 168,4481 750,000 998,395 97.174 98,236 100,000 100,000 2,291,716 925,085 {1,072.996) 2,143,8ts5 2,291,716 925,085 {1,072.9961 2,143,8C15 25 Analysls of net assets between funds Unrestricted funds 2024 Restrlcted funds 2024 Total 2024 At 31 December 2024: Tangible assets Inveslmgnls Current asselsllliabllitlesl 976,585 859,525 417,583 976,585 859,525 582,503 fe4,920 2,253,693 164,92LI 2,418.613 -38-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED FOR THE YEAR ENDED 31 DECEMBER 2024 25 Analysis of net assets bebuèon funds (Continued) Unrestricted funds 2023 Restrlcted funds 2023 Totsl 2023 At 31 December 2023: Tangible ass8ls Investments Current asselsllliabililiesl 1,006,049 628.497 S09.259 1,006,049 628,497 711,404 202,145 2,143,805 202,145 2,345,950 26 Related party transactions Transactlons with related partles During the year the chalily entered into the following Iransadions with related p8rti8s= MPS Commercial Limited and Rare Disease Res8arch Partners LiTniled are 100% owned subsidiaries of The Society for Mucopc>lysa¢charide Diseases. Induded in other debtors within the chari18ble company is thè inlercompany balance of £25LI,539 12023.. £240,386). All the profits of hAPS Commercial Limited for the period have be&n distributed by Gift Aid lo the charity, these lotalled £150,53912023.' £40,387). Rent and recharges of £34,37512023.' £20,000) were made by The Society for Mucopolysac¢haride Diseases to MPS Commercial Limited. The Society for Mucopolysaccharide Diseases has wovided MPS Commercial Limited with a £200,000 long- term loan12023.' £2QCI,0001 on which interest of £14,37512023.' £13,000) was charged. -39-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 27 Cash generated fromllabsorbed by) operatlons 2024 2023 Surplusl{deficit) for the year 72,663 {183.3781 Adlustm8nts for. Investment income recognised in slalemenl of financial activities Depreciation and impaimienl of tangible fixed assets 175,627) 34,124 150,7201 34.474 Movements In worklng capltal: DeGreasel(increasel In debtors InGrease in creditors 2Q2,807 378,459 (171,7161 81,787 Cash generated froml{absorbed by) operations 812,426 (289,5731 28 Analys1$ of chang?s In net funds The chaTily had no material debl during the year. .40.