I CHARITY COMMISSION FOR ENGLAND AND WALES Trustees, Annual Report for the period 1 January 2023 P•rfod stsrt dat• To Period ond date From 2023 31 Dernber Charity name: A¢lJon FCS Charity rnglstration number. 1165873 Objectives and Activities Summary of the purposes of the charity as set out in its governing document Parn 1.17 The objects of the CIO are to r81i8ve sickness and preserve and protect good health of persons suffering from Familial Chylomicronaemia Syndrome (FCS) and related condtti'ons by: raising awareness of FCS and related conditions", 2. educating patients, medical personnel and the public in general about FCS., 3. supporting people with FCS and those affected by it to live a full, healthy and integrated Itfe.. advocating for access to excellent care and new medIneS for all ients with FCS The charity endeavours to promote leaming and provkde infomiation on the condition of FCS on its Vlebsite and swal media platfomis for patients, their families and medical professionals. Summary of the main activities in relation to those purp¢)ses for the public benefrt, in particular, the aGtivrties, projets or servi5 identified in the accounts. Par¥ 1.17 #j 1.19 Workshops and presentations to talk about FCS are attended and delivered to promote awareness of the ¢ondtiion. Statement confiming whether the trustees have had regard to the guidance issued by the Chaiity Commission on pU1C benefit P4r• 1.18 In the period to 31 December 2023, the trustees have had regard to the guidance issued by the Charity Commission at all
Addltlonal inforniation (optlonal) You ma ch005e to include further statements wPEre relevant about: Policy on grant fflang pa 1.38 Policy on social investment including program related investment Parn 1.38 Contribution made by volunteers Paro 1.38 Other Achlevements and Performance Summary of the main achièvements of the charity, identrfying th8 dffteren the charity'$ work has made to the circumstances of its beneficiaries and any wider beneffts to socÈ8ty as a whole. During the year we continued to support and network with organisations with interest in FCS and associated conditions. Para 1.20 Workshops and conferen5 were attended for infomiation sharing and Wle continued to manage the facebook group FCS Communty. and ran tha annual FCS Awareness Day, Addltlonal Inforniatlon (optlonal) You ma choose to include fijrther statements where relevant about: Achievements against objectives set Para 1.41 Performanc* of fundraising activities against objectives set P•ro 1.41 Investment perforniance against objectives Parn 1.41
Financial Review Review of the charity's financial position at the end of the period P•ra 121 At the end of the peTrod, cash funds in the Bank amounted to £29, 524. Receipts during the year totalled £339, whilst payments amounted to £787, showing a small net deficit for 2023 of £448. statement explaining the policy for holding reserves stating why they are held Para 122 .Currentty, the Charity does not have any of its unrestricted fijnds in the Bank set aside as a reseNe and no policy exists. Amount of reserves held Reasons for holding zero reserves Parn 1.22 Para 1.22 All cash funds are unrestricted and sufficient to cover operations and assouated risks for more than one ear. Details of fund materially in deficit Explanation of any uncertainties about the harity continuing as a going ¢oncem Pgrn 1.24 Para 1.23 AddftSonal Infommuon (optlonal) You ma choose to indude furtper statements where felevant aboLrt.' The Charity's main sources of income are through other organisations and groups seeking knovledge arKI advice on Familial Chylomicroneamia Syndrome. The Charity also receives a small numter of donations. The chaiity's principal sour$ of funds (including any fundraising) Para 1.47 Investment policy and objectives including any social investment poli adopted Parn 1.46 - No signfficant funding or regular income for the Charity In the long t8nn, the Charity is very dependent on grant funding from Pharnaceutical organisations with vested interests in bringing potential new dwgs to the market for the treatment of FCS and associated conditions. No grant funding of this nature is currently being received. A description of the principal risks facing the Parn 1.46 - Challenges for Trustee recruitment and retention Other
Structure, Governance and Management Description of charity's trusts.. Type of goveming document Para 1.25 Constitution How is the charity constitLrted? ie g dnip,-or, as50CI3:, Trustee selection methods including details of any constitutional provisions e.g. election to post or name of any person or body entitled to appoint one or more trustees Parn 1.25 Charitable Incorporated Organisation ra 1.25 Appointed by the Trustee Board Addltlonal inforniation (optional) You ma choose to include further ststements where relevant about: Trustees are selected having regard to the SlIS and experienc* needed to run a small organisation, along with having urKlerstanding andlor experience of FCS or similar conditions. Policies and Frocedures adopted for the induction and training of trustee6 P•ra 1.51 All new Trustees are provided with a copy of the constitution and past pa¢ks of Board papers, which include policies and procedures approved by the Board. The charity is run by a volunteèr board of trustees, the chair of which {and founder) is the main operational executive. The Treasurer is a qualified Chartered Compary Secretary. The charity's organisational structure and any yder neOrk with bvhich the chanty yrkS 1.51 The Chanty works with related netrNorks'. Heart UK, Diabetics UK, Genetic Alliance. Rare Disease UK, Rareconnect. Relationship ¥th any related parties Parn 1.51 other Reference and Administratlve detalls Chari name Action FCS
Other name the Cha ' uses Registered charty numter 1165873 Charity's principal address 36 Gaskell St. London SW4 6NS Nameg of the charlty trustees who manage the charity Trn8ts• n•m• Offi¢• Olany) Name of pernon lor body) ¥tW¥•d Ént tru8ts• an Jill Prawer Chair Helen Aderin Pat Wade Treasurer Flnian Nicholas Patrick Day-Lewis rate truste85 - names of the directors at the date the Director nam• vRsa Name of trustees holding title to belonging to the charity Tn*ts• n4m•
Funds held as custodian trustees on behalf of others Description of the assets held in this capacity Name and objects of the charity on whose behalf the assets are held and how this fals wtthin the custodian Chanty's objects Details of arrangements for safe custody and segregation of such assets from the d)arrty's IMI assets Addltlonal Inforniatlon (opUonal) Names and addro88es of advi••rs (Optlonal Infomiatlon) of advls•r Name Addr• Name of chlef exe¢utlve or nam of senlor staff members (Optional inforniatlon) Exemptions from disclosure Rea50n for non4isdosure of ke nnel details Other o tional information Declarations The trustees declare that thoy have approved the tru$t•es' report above. sign on behalf of th• charlty'$ trustees Slgnature(s) ICI¢X L/&a Po8ltlon (eg Secretary, Ch•ir. etc) Date
CHARITY COMMISSION FOR E14GLAND ANO WALES Receipts and payments accounts CC16a Forth• pwiod To Section A Receipts and payments fvnds Totsl fvnd¥ L•ty••v Al Rec•1 tknnn 1CII 14 100 14 AR) tablo). Tot•1 tK•lpts Sub total A4 A8s•t and In¥estm•nt g9• tabl• Sub total 11 C•8h f•mds thls yè•r CCXX R1 ISSI 23ffj9f2024
Section B Statement of assets and liabilities at the end of the period Unrestrlcted R8Strf¢tèd Endowrnent Categorles B1 fA•h fw 2•J24 Tot•1 c•sh luftds fund• fvnds to n••r•st£ De-21.'5 CurMntY•l Cufftrtwiu• Ohiai.¢ B4 A•80ts rntsln•d forth• ¢harfty'• own BS U•blllll• Sijnaturn PAnl Name Dat• of rcval 2310W2024