Noonan Syndriwne As¥o¢i• Cont•nls af the Financial Slatements for Year Ended 31 Mar¢h 2023 Pag• Reference and Adrninistr•tive Details Report of the Trustees Independent Examin¢rf$ Report ststement of Financbal Activlties Balance Sheet Notes to the Flnanclal Slatements 8 to 13 Detalled Statement of Finan¢ial Acllvitles 14
Noonan Syndrnme AsgocSatlon Referene¢ and Admlnistrntive Details for Ihe Year End•d 31 March 2023 TRUSTEES Sharon Allsopp Chair Andrea Reid- Kelty Dewty Chair Grayson Btrer TaSUre[ Michael Patton Medical Adviser Brian Carlton Jeanette ttyer lan Legg PRINCIPAL ADDRESS PO Box 692 Blad(bum B82 9RF REGISTERED CHARtrY NUMBER 1140671 INDEPENDENT EXAMINER Morgan Grrfffths LLP Chartered Accountants Cross Chambers 9 High Street Powys SY16 2NY BANKERS Barclays Bank PLC Leester LE87 2B8 Charity Managgr Sandie Dent Corresponden¢e Address PO Box 692. Blackbum. BB2 9RF Page 1
Noonan SyThlrome AssocEatlon Report ofthè fntsteès for the Yeaf ErKled 31 [Ch 2023 The trustees present their report with the financial statements of the carity forthe year ended 31 March 2023. The Iruslees have adopted Ihe provisK)ns of Accounting and Reporting by Charities.. Statement of Recommended Practw appli¢abb to charities preparing their aOnts in accordance vthh the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 102) (effective 1 January 2019}. OBJECTIVES AND ACTIVITIES Objectives and alms The objectives of the charity are lo provi(le relief of all persons affected by Noonan Syndrome and related conditions lon the RaslMAPK pathway) by all or any of the foll¢)wing n$.. 1. The provision of general advi. guidance and support servKes for persons aff by Noonan Syndrome and related conditions lon the RaslMAPK pathway), their families. (kpendents and ¢arers', 2. The fa¢ilitath)n and promotion of research into the causes. effects. diagnosis. trea1Thnt and ref of Noonan Syndrome and lated conditions (on the RaslMAPK pathway) with the useful results of research b.ng disseminated for the benefit of the publt., 3. The advancerrEnl in the educalrfyrt of the Publ in relatn to the effects of Noonan Syndrome and related conditions lon the RaslMAPK pathway) by ¢ornmuni¢ating p)rts and disseminating inf0mtiOn by any means or media conceming rewrch work and $iudies undertaken by or on behaifof the charity. In all that we do. our trustees have given careful consideration to the Charity Commissh?n's general guidance on public benefft and have complied with the duty in section 4 of the 2011r20[ CharItS Act. ACHIEVEMENT AND PERFORMANCE Charitable activities The Charity entered the year in a strong finanaal position. with an agreed strategy to invest surplus funds into.. further strengthening its operab'onal systems and pr(sseS developing a new website and cornmisstoning the professional creation of medical factsheets delivering a Families DaylA¢tivilies Weekend. whth had not been Frt)ssible in ihe iwo preceding years due lo the Covid-19 pandemic Other planned key strategic objertNe5 were delNered during the year. including a successfvl appltcalion to the Cranfield Trust lo further develop the Charity's strategy and 3-year business plan. This invofved Menlorlcrilical Frnd support for the Charity Manager over a X-MOnth period. We also continued to delNer online webinars on a rdnge of medical and non-medical tO[S to support our members. Imth the research projects 'pumpprimed' by NSA grants Undeay. the Charity supported an additional project delivered in collaboration with Loughborough UnNersity: LNing with Noonan Syndrome. This social research study will explore, through surveys and in-depth inteNiews. the day-to-day experience of families and individua15 affected by Noonan Syndrome and provide greater understanding of how the condition impacts on people's lives. This understanding will not only contribute to leaming Within ihe health and social care sectors bul will also help infom the Charity's future supp)rt activiti'e& The planned reb'remenl ofthe Finan Officer in Octobergave u$ to develop and implement new finanaal processes wth no disruption to the Charity's operatn$. We invested in Xero finance sofvare and recruited an extemal professional bookkeeper to handle the daYdaY rec4)rding and reconcilialton of the Charity's accounts. Towards the end of the year, we launched the new website and med11 facsheets as planned. The enhanced look and searchability of the sile has resuKed in an increase in new members. including health and S(la1 care professionals. In October, we hekl a Families Weekendlconference at Whitemoor Lakes Activity Cenlre, with workshops, presentations and a medical Q&A session for adults and a range of exob.ng activities for children. Page 2
Noonan Syndrome Association Report ofthe Tntstees for the Year Ended 31 March 2023 FINANCIAL REVIEW Financial positk>n The statement of Financial Activities SIKMS a deficil for the year of £20.576 (2022.. surplus £24,190), and reserve5 now stand al £97.791 (2022.. £118.367}. Reserves pollcy The charity does not have a separate forffl policy on Reserves but foll¢)wing Board discussions, the Chair, Treasurer and Charity Manager follow a polw based on achieving free reserves of a minimum of behveen 3 and 6 months. operating costs induding those associated with the cost of a part ts'me charity manager. The Charity has an established and approrKiate financial management system whith Is wulaty reviewed by the Board and put into day lo day Practi by the Charity Manager. Charity Treasurer. Finance OffKer together with the Chair of Tfuslees. Free reserves which equate to nel Current assets (exdthling reslricted fvndsl amount lo £57.513 {2022.' £66,389). FUTURE PLANS The Board rewews its strategic plan annualty wilh a nJ-point revivw carried out by the Strategy & Finance subgroup to check progress. Significant Pfogress has been made over the year. though limited internal Slaff resource Can to a challenge in progressing obiectries within the ambitious timescales aged. We will continue to revlew and adjust tirnescales lo ensure they are realistsc. but overall good progress has been made against key obiectsves whth have strengthened the charity's operational struciure. Over the corning ffinanal year. we will be workiThJ with Cranfield Trust again. to devebp a Communications Plan. This plan supports several Strateg obiecb'ves and wll be ltal in the Charity's airn lo increase regular glving and raise its profile within the healih and social care seGtors. We will also make further enhanGements to tha website. explore options for regional support for members. and recruit operational volunt6&rs and two atjdllional Iruslee8 With reVant experience in finance, markebng andlor clynmunts.0n5. As the charity's membership continues to grtrw. $0 the aclT¥ib'es and resource lo delNer them need also to grow. Managing this in a safe and posilive way will conbnue to be a key locus during 2023124. STRUCTURE, GOVERNANCE AND MANAGEMENT Goveming do¢urnent The charity is controlled ty its goveming docuff*nt. a deed of trust and constilules an unincorporated charity. R•¢rultm•nt and appolntment of new tru•l•e8 Trustees are elected by way of a resolution of the Charity at the Annual General Meeting. The Tnjstees also have the power at any time. and from to time. lo appoint any person to be a Trustee Isubject to certain slriclionsl. either lo fill a casual vacancy or as an addrtion to the existing members of the Board of Trustees bul so that the total numter of Trustees does not exceed any maximum number fixed in accordance with Ihis Con51ilution. Any Trustee so appointed shall hold office onty untsl the next following Annual General Meeting. and shall then be eligible for re-electim. Organlsatlonal structurn The charity is organised so thal the trustees meel regulady to manage its affairs. Full Trustee Board meetings are held al leasl four limes per year th other rmetings held a5 rwuired. l)oth face to faGe and by confefence call or inlemet. There is an Annual General Meeting heid for all Ihe membefs of the ¢harity at whth Trustees are elected or confimied. The part time Charity Manager undertakes most of the day to day operalions of the charity. In addition to a Chalr, the trustaes have appointed a Dewty Chair and a TasUrer. Page 3
Il¢)onan Syndrom• As8oelation Report of the Trustees for the Year Ended 31 PAarch 2023 STRUCTURE, GOVERNANCE AND MANAGEMENT Risk management The trustees have a duty to identrfy and review the risks to whth the charity Is exposed and to ensu appropriate controls are in place lo provide reasonable a55urartt against fraud and error. It has an agreed set of financial prdureS and w11c5. practKes and guidance to cover its activities. indLKling the reserves policy set out above. Approved by order of the board of Iru$tees on 30 January 2024 and syned on its behalf by.. Sharon All8opp - Trustee Page 4
Independent Exami¥ Report to the Trustees ol Noonan Syndrome Association Independent examinerfs report to the trustees of Noonan Syndrome Association I report lo the charity trustees on my exarrinalh ofthe accounts of Noonan Syndrome Association (the Trust} for the year ended 31 Mard) 2023. Responsibiliti8s and basis of report As the Charity trustees of the Trust you are responsible for the preparat)n of Ihe accounts in accordance with the requ1merb¢S of the Charities Aci 2011 ('tt)e Ad). I report in respect of my examination of the Trusfs xcounts carried out under Section 145 of the Act and in carying out ry examinatN)n I have follrywed all apble DirecthS gNen by the Charity Commission under Section 1451Sllbl of the Act. Independent examinerfs statement I have completed my examination. I confirn that no material matters have to my attention in connection with the examination gr¥ing me cause to believe that in any terIal respect accounting records were not kept in respect of the Trusi as r4uired by SectM)n 130 of the Ac¢ or the accounts do not accord with those records.. or the accounts do not compty the appIable requirements a)ncerning the fom and contenl of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement th8t the aUnts grve a true and fw'r vie4V whiGh is not a matter considered as part of an independent examination. I heve no ¢onms and have come across no other matters in o)nnection with the examination to which attention shoukl be drawn in this reFth in order to enable a rKoper understanding of the accounts to be rea¢hed. Thorn Landers BA FCA Morgan Griffilhs LLP Chartered Accountants Cross Chambers 9 High Street Newtown Powys SY16 2NY 30 January 2024 Page 5
Il¢)onan Syndrome Assoclatlon Slatement of Financial Activitses far the Year Ended 31 hlarch 2023 31.3.23 Total 31.3.22 fund fvnd$ Notes INCOME AND ENDOWMENTS FROM Donations and legacies 26.681 3,587 30,268 27,360 Charitable a¢tivitie8 Research Support Neiwork Awareness 21 42 42 8.000 8.500 10.000 8.021 8.542 10.042 23,150 12,750 Other income Total EXPENDITURE ON Charltabl• 4ctlvlll•s Research Support Network Awareness 6,474 18,045 6,474 49,832 7,376 21,831 31.787 Tot•1 NET INCOMEI(EXPENOITUREI 18,876> (11,700) (20,576) 24,190 RECONCILIATION OF FUNDS Total funds brought ft)Thrnrd 66.389 51,978 118,367 94,177 TOTAL FUNDS CARRIED FORWARO Page 6
Balance Sheèt 31 March 2023 31.3.23 31.3.22 Notes CURRENT ASss Debtors Cash at bank 10 6.565 96,028 10.912 108.259 102,593 119.171 CREDITORS Amounts falling due within one year 11 14.802} 18041 NET CURREfrif ASSETS 118367 TOTAL ASSETS LESS CURRENT LIABILITIES 97.791 118,367 NET ASSETS 118367 FUNDS Unrestrted funds Reslricled funds 13 57.513 66.389 TOTAL FUNDS The financial statements were approved by the Board of Trustees and aulhorised for issue on 30 January 2024 and were swned on its behalf by.. Sharon Allsopp- Trustee The notes fo part of Ilwe fmanoal state11ts Page 7
Noonan Syndrome Association Notes to the Financial Statèments forthe Year Ended 31 hlareh 2023 ACCOUNTING POLICIES Basi5 of preparing the financial statements The financial statements of the charity. which is a publ tenefit entity under FRS 102. have been prepared in accordance with the Charities SORP IFRS 102) 'Aceounting and Rewrting by Charities." Statement of Recommended PractKe applicable lo charities preparing their accounts in accordance vrith the Financial Reporting Standard appIable in the UK and Republic of Ireland {FRS 1021 {effective 1 January 20191.. Financial Repo"n9 Standard 102 'The Financial ReFJOrting Standard appltcable in the UK and Republic of Ireland. and Ihe Charities Act 2011. The finanryal statements have been prepared under the historical cost convention. Income recognition All income is recognised in the Statement of Financial Activit once the charity has entittement to the funds, it is probable that the income will be received and the amunt Can be measured reliably. Expenditure Liabilities are recognised as expenditure as S)n as there is a legal or Constn"Ve obligation committing the charity lo that expenditure. it is probable that a transfer of economK benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related lo the category. here eosls cannot be directly attributed to partlar heing$ they have been allocaied to activities on a basis consistent with the use of reSoUrs. Grants offered subject to condibons whKh have not been met at the year end date are noted as a mmitrnenl not accrued as expenditure. Taxation The charity is exempt from lax on its Charitab acbvities. Fund a¢¢ounting Unrestricled funds can be used in accordance with the ¢haritable objecb'ves at discretion of the Injstees. Resth"cted funds can only be used for parttcular restricted purposes within the objects of the charity. Restrictions ar when specified by the donor or when fvnd5 are raised for particular restri¢ted purposes. Further explanakn.on of the nature and purtKse of e&h fund is included in the notes to the financial ststeffnts. DONATIONS AND LEGACIES 31.3.23 31.3.22 Donations Gift aid 27,341 24.593 2.767 27.360 Page 8 coniinued...
Noonan SYlf0? Association Notes to th• Flnanclal Statements - continuod far the Year Ended 31 March 2023 INCOME FROM CHARrfABLE ACTIVITIES 31.3.23 31.3.22 Activity Reseaffh Support Nelwork Awareness Grants Grants Grants 8,021 8,542 10,042 23,150 12,750 26,605 Grants received. included in Ihe above. are as foll1.. 31.3.23 31.3 22 Novo Nordisk Limited Novacyl Group Sense - The Natiional Deafblind and Rubella Association St Geor9e's Hospital Charity 10.105 10.900 25.000 8.500 8,000 35.900 CHARITABLE ACTIVITIES COSTS Direcl Costs Isee note 51 Support costs {see note 71 Tol81$ Research Support Netsvork Awareness 6,141 49,166 23,502 333 666 666 6.474 49.832 78,809 80.474 DIRECT COSTS OF CHARITABLE ACTIVITIES 31.3.23 31.3.22 Telephone Postage and stationery Promotional material Sundries Family day Travel expenses Computer & IT support costs Charity Manager Administration costs 479 1,333 1.035 668 878 35,635 187 14,957 18,783 2,080 2,394 20,270 26.556 Page 9 continued...
Noonan Syndrom• A8•ocialion Noies to the Finpncial Stst¢ments- ¢ontlnued for tl* Ye•r End¢d 31 IAar¢h 2023 GRANTS PAYABLE 31.3.23 31.3.22 Research Support Network 3.150 The total grants paKI to institutions duriThJ the year vras as foll(yws: 31.3.23 31.3.22 G1 OrrTrJnd Street Ho$tal Loughborough UnNersity 7,743 SUPPORT COSTS costs Re8ear¢h Support Nebwork Awareness 333 Activity Management Governance costs Basis of allocation Based on time Based on time TRUSTEES, REMUNERATION AND BENEFrrs There were no trustees, mUneratiOn or other benefits for the year ended 31 March 2023 nor for the year ended 31 March 2022. Trust•••' Ox0$ During the year no trustees were Rimbursed for travelliw expenses12022 - nill. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES unrestn.thd nd Restricled fvnd8 Total funth INCOME AND ENDOWMENTS FROM Donations and lega¢ies 27,060 27.360 Charltable actlvllles Research Supp)rt Nefvk 23,150 23.150 Total EXPENDITURE ON Page 10 continued...
Ilot•s to th• Flnan¢lal Ststemwlts. eontimd forthè YèarEnd•d 31 Ilarch 2023 COMPARATIVES FOR THE STATEMEKf OF FINANCIAL ACTivrriES- contlnu•d Unreslrthd Resln"¢X&J Tolal fuThJs Charltable actlvltl•s Research Supwt Net 3.150 7,743 7,376 21.831 14,088 9.863 Total 28.177 10,893 39,070 NEf INCOMEI(EXPENDITUREI {1.1171 25.307 24,190 RECONCIUATION OF FUNDS Total fund$ brought forwanl 67.5L 26.671 94.177 TOTAL FUNDS CARRIED FORWARO 66,389 51,978 118.367 10. DEBTORS: AIKIUNTS FALUNG DUE WITHIN ONE YEAR 31.3.23 31.3.22 Accrued inc4 Prepayments 5,599 2,652 8.260 6.5 10.912 11. CREDITORS: APKIUNTS FALUNG DUE WITHIN ONE YEAR 31.3.23 31.3.22 Trwje rJbt0 3.902 4,802 12. ANALYSIS OF NET ASSETS BETWEEN FLINDS 31.3.23 31.3.22 To1 ftjnds unl1 Restrithd Trj Current 8ssets Current liabilrt f2,315 14.8021 40,278 102.593 14.8021 119,171 18041 57,513 40.278 97.791 118,367 P4e11
Noonan Syndrom• A$SlatIon Notes to the Flnancial Statements- continuèd for the Year Ended 31 March 2023 13. MOVEMEKf IN FUNDS Net mo%*ment In funds At 31.3.23 At 1.4.22 Unrestricted funds General fund 86.389 18.876) 57,513 Restricted funds Noonan Syndrome Research Fund Families Evènl The Andiew Famity Research Fund Supwrt costs 21,955 20,000 10,016 8.300 120.000) 30.255 10.016 51,978 (11,7001 40.278 TOTAL FUNDS 118,367 120.S761 97.791 Net rrrnel in lunds. included in the above are as foll¢M'. Incomlng resources Resources expended Mo¥¢mgnt in fund$ Unrestrlcted funds General fund 29,811 {38,687} {8.876) Restricted funds Noonan Syndrome Research Fund Families Evgnl Support costs Awareness 8,300 8,500 3.287 10,000 128.500) (3,287) 110,000) 120.0001 30,087 (41,7871 111,71XI) TOTAL FUNDS 59,898 (80.4741 120.576) Comparatives for movement In funds movement fin fuThas Al 1.4.21 31.3.22 Unrestrfcted funds General fund {1.1171 66.389 Restricted funds Noonan Syn(Irome Research FurKI Families Event The Andrew Family Research Fund Support costs 1,655 15,000 10,016 20,300 5,000 21,955 20,000 10,016 26.671 25.307 51,978 TOTAL FUNDS 94.177 24,190 118.367 Pa9E12
forthe Year Ended 31 •h 2023 13. MOVEMEwf IN FUNDS- contlnued Unrestricted fundy General fund 27.¢AO P8.1771 (1.1171 Restricted funds Noonan Syndrom8 Research FuTrl Families Event The Atxlre4V Famity Research FUNJ Sup1 costs 20,300 3,150 7,750 {3.1501 17.7431 36.2CKI (10.8931 25,307 TOTAL FUNDS 63,260 (39.0701 24,190 The Andrew Famdy Resech F1. This is to fund search to No)nan Syndrcrfre. 14. RELATED PARTY DISCLOSURES During the yew the trustees rn dCarS to tr* Iijtallw £1.590 2022: £2.181). Page 13
Noonan Syndrom•A8Boclatlon Oetalled Ststem¥nt of Flnon¢lal A¢tlvltte# lorthe Year Ended 31 March 2023 31.3.23 31.3.22 INCOME AND ENDOWMENTS Oonations and legacle8 Donalior Gift aid 27,341 2.927 24,593 2,767 30,268 27.360 Charltable acthiltles Grants 26,605 35,900 Othèr Income Other Incorn 3,025 Total Incomlng rn8ource• 59.898 63280 EXPENDITURE Charttable actlvltle• Telephone Postage and 81altonery Promotlonal material Sundrie8 Famlly day Travel expenses Compuler & IT supporl Gosls Charity Manager Adminislralion costs Grants lo inslilulions 479 1.333 1.035 878 35,635 187 14,957 18.783 6.686 2.394 20,270 10,893 78,809 37,449 Support Gosts Govern•nce Costs Indemnrty insurance Accountancy and legal fees 669 996 733 888 1.665 1.621 Total resourc&s expended 80.474 39.070 Net {expendlture)llncome {20,5761 24,190 This page dc¢s not lorm Fort Of1 statutory financial Btatemenis Page 14