Cont•nts of Ihe Flnanclal StstenMnts lorthe Year Ended 31 pA?h 2024 Paga Reference and Admlnlstrntive D¢la115 Report of the T¢8•$ 2 to 4 Independent Examinerfs Rewt Statementof Flnancial Actiyits Balance Shg8t Notes to the Financlal Siat•nwnts 8 to 13 Detailed Stalwn•nt of F1¢1 Actiyib 14
Noonan Syndrome A#•oclatlon Reference and AdmInlstrali DetallB forth8 Year Endèd 31 Alarch 2024 TRUSTEES Sharon Alb)pp Chair Andrea Reid- Kelly DepLAy Chair Grayson Bowler Treasurer mhael Patton Medical Adviser Brion Carlton Jeanette t¥er lan Legg PRINCIPAL ADDRESS PO Box 692 Blackbum 882 9RF REGISTERED CHARir NUMBER 1140671 INDEPENDETrif EXAMINER Morgan Griffiths LLP Chartered Accountants Cros5 Chambers 9 High Street Newtown Powys SY16 2NY BANKERS Balay5 Bank PLC Leicesler LE87 2BB Charlty Manager Sandie Dent Corre5pondenee Address PO Box 692, Blackburn. 882 9RF Pag• 1
Report ofth• Tnmtees forthe Y•arEnd•d 31 Marth 2024 The trustees present repcAt with fw)ancb81 ststeM d the thaiity for the year ended 31 March 2024. The trustees have adopted the pro¥ispMs of Accounting and Reporting by Charlies: Statement of RecOnended Prxtice appIab to chariti.es preparing their accounts in awjftlance with I Financiai Reporting Slandafd applicable in the UK and ReputlK of Irend (FRS 102) {effe(we 1 January 2019). OBJECTIVES AND ACTivmES Oblectlvps and alms The objectNes of the charty are to provmle reli8f d all rlS affeded by Noonan Syndrom and related condiiior (on the RaslMAPK palhwayl by all or arhy dlhe lolbxiNJ Mn1'. 1. The provoion of g8ner81 advKe, guidance and support Ser for persons affected by N(xJn8n Syndrc¥ne and ated o)ndilvJns (on the RalAPK pattfivayl, their familtes, dep&)d8nts and cafern,. 2. The lacilitation and pro1tiOn of re¥earch into the causes, affects. diagnosis. treatment and reli of Noonan Syndrome and relaled Condi3 lon the RosWK pathway) t•Ah the useful resutts of research being dissemit)aled for the benefrt ol the Pu.. 3. The advancement In Iho educakn Lrf the In relat)n to the effglts of Nnan Syndrome and reLated ondilion8 lon the RasNAPK palhwayl by cOmmuntrn9 worts and diss6minating informglion by any means or media concerning research work arKI Stud undertaken by ¢y on behalf of the chanty. In All th81 we do, our trustees have given careful con8Nlèrnlll to the Ch81ity Commissn,$ general guldance on publK benerrt and hgvo compld wilh the duty in sedion 4 ofthe 2011r2006 Chariiles Act. ACHIEVEMENT AND PERFORMANCE Charltablo 8ctlvltl•s The Charity entered the year in a strong finan¢ial arKI a c(xTVTMI to spend fund8 on.. - payment of the Iwo research grant awards on 8ful cx)nWh?n of these projects delivering a Conference and Familtes DaylAdivitstt Vleekend in April 2024 Ipbnned. wjanised, and wlth some expenditure falllng Into the 202>4 far1 year). Plannod strategic objectlb8 de1[0d during the yr including a rwff4V of key Wjlths. developmont of fomial recruitment re$S and packs for tru$tees and othef TAunteerS. ccvnprehensi safegua1n9 Iralnlng for designated ¥afeguardlng leads. the Chaw of trustees the chaiity man8ger. and ¢ontinued planning and delivering of online bInarY on lopieal arKI nwrtanl issues for Meffl. The research proie¢is 'pumpwirnd' by NS4 9rants cc•npJ succe8$fvlly, helping those rn8earch 188m8 secure ftrture furKling from other sources lo progress their find798. The 'LNing with Noonan Syndrome, Soclal research propct was 8180 suo$s1u1ty delNered during the year. wth eady resuns from the Survey elemnl feeding into the charity's rn4errn strategic revie. and a fuller from the in4fjèpth intetNV•V8 expected later in 2024. This has been an importanl plect for charity and will feed into the full strategic V•V lats in 2024. to infoffn actiths for 202M ar¥J beyd. The charity Lwan supp)thg new r¢¥eorch sxwts Ing Adutt N¢)onan Syndrome and Leamlng in Young peop with NS. Both subject areas are incTrasingty rebevarrt and wrptytsnt to our membern and the fvlure of understanding, Ireatment and intemntions for pwle with NS. The drty opened an account wilh CAF bank lo enabk online banking, fUrtr increasing administratv efficienw lo build on the sijnfficant systems and proc Irr04ments carried out in the prevMJus year. T¢y•¥8rds the end ol the year. we began detaid pnnIng for a wirvJ 2024 Conference and Families Daykend e¥n( uslng feedbadl from the October 2022 eN*rt to infomi a rangg of ¥rtMkshop topics and speakers. Membership CA)ntind lo gr thring the year. dOUbng by year end P>3• 2
forth• Ye•rEnded 31 March 2024 FINANCIAL REVIEW Flnanelal position The Ststern1 of Financial AAivit$ a d¥1 for the year of £17.905 12023: £20,576). and rn8epA8 now stand at £79.886 12023.. £97,791). RMeThi8s pollcy The charity does Mt have a separats forn poiry on Re¥epB but folhmng Board di8cus8ions, the Chatr, Treasurer aNJ Charity Manager folkM a Fdicy based on achn9 free reseNes of a minimum of bets¥een 3 and 6 nKnths' operating eosts induding those asxtiated with the ¢ost of a part time charty manager. The charity has an established and approw financial managennt system whth 15 reguw reviewed by the 80ord and put into day lo day prac by the Charity Manager, Charity Treasurer, Finance Officer topther with the Chair of fnJ&ees. Frne re8ep4e8 •4u8te to nel oJrrt Msets (•xdtwJing restricted funds) arr#wnt £59,278 (2023: £57,513). FufuRE PLANS The Board Wff4VS its strategr plan annudty wilh a mispolnt r8vitrw by th8 Strategy & Finan subgroup. Significant progress has been mwje over the year. though InIted intemal staff resourc• continues lo bo 8 thallenge in progressing obj'ectives within the ambItu$ lim&8calè8 agreed. We will o)nlinue lo revtew and adjust timescales to ensure they are realith, bul overall g progress has teen made against key ctjjectes vknich ha itrengthened the chaws oFi8tthal thcture and 1Th>ga8•d our vijibllty 8nd 8tanding. r the coming financi81 year. wa fjll woqres$ acti• w our Communk8tknn8 plan, IncludTrng 8ctiv8 recruitment of 8F£ualisl thUnteerS to SUP[ with this. The plan supports 8ev•r81 slraleg ¢blecie$ and is critical lo the Chaiivs aim ) Increa roguw givbng and rnlae Its wofilg within tha he8lih and SOCAal care sectors. Vle will 8190 m8ke further enhancements lo resouw and 0)ntifi exploriThJ otsns for Ivachkng and supporting rrKye members acmsg the UK. Vk will deliver a tsference and Famities Event with nath)nal and intemalJnal speaker8 ho expert kr of N(x>Thgn syrvjr(. AS the chantys memtership o)nlinues to grtyw sKJnfficantty. 80 the activit 8nd resource lo delNer th•m need also to grow. Managing th in a safe and positi¥e By conlinue to be a key locus during 2024r25. STRUCTURE, GOVERNANCE AND MANAGEMENr Governlng document The charty is controlled ty ts govemwig doujfftht, 8 deed of trust and constitirtes an uThncowrnled charity. R•crultment and appolntment of new trust••s Trustees are elecied by way of a rnsOlUti of Ihe Charity at the Annual General Meeling. The Trustees al¥0 have the POW¢f at any lune. and fmm lime to ti. to appoirl any pe(son to be 8 Trustee Isubieci lo certain reslrict¢onsl, ether to fill a casual vxancy or as an addrtn to Ihe ¢ting membern of the Board of Trustee8 bul so that the lotal number of Twslees [kS excead any mgxirmm nurtjer fixed in &cordance with this Constitution. Any Trustee so apwinted sh811 hokl Off onty until the next follmng Annual General Meeling. and shall then bo eli9 for re.
lortheY•ar Ended 31 March 2024 STRUCTURE. GOVERNANCE AND IAANAGEMEI Oryanlsatlonal structure charity is organised so that the tnjstees meet rngukrty tt> manage its affairs. Full TNstee Boord meetings are held at least four tirres per year with other nwotmy hekl required, t)th f to lace and by conference call or intemeL There 18 an Annual Gener81 Meeting hth for all the mèrn1 of the charity at which Tnjstees arg elBcted or confirmed. The part tlme Charity Manager undertakes most of the day to day operat)ns of the chaiity. In &Jdition to Chair, thè Iruste88 have •pp)inted a Lputy Chalr and a TTegsurer. Rlsk m#nagem•nt Tho trustees have a duty lo Mlentify and the risks to which charity i¥ exposed and lo ensure appropriate contro& are in pL4ce to pro¥ide rea%ab aswjranee against fraud and error. It has an agreed 8et of financMI procedures and prxlKes and guKlan to C4>ver *8 actfvilM, including the re$8N88 polw 8el out above. Appro¥•d ty ¢Jrd•r of the bowd (rftrustees on 25 January 2025 $bned on its behaw ty. Sharon A180pp- TnJsteg Page4
Indowidont Etyninrfs R•portto Tntytws af Ind•pndent examlnerfs rep(wt to the tru¥leM of Noonan SyNlrryrn Assoclallon I report lo th8 charity trustees on my examinati of the a(tounts of knnan SyndnTr A880ciatKn (the Trust) fithe year ended 31 March 2024. Responsibilities and basis of Ygport As the chanty trustees of the Trust you are for th8 Preparat of the acctsLmls in accordancg wth the requirements of the Charilies Ad 2011 fthe W.. I rewt in * of my eyaminab'on of t Trusfs •xounts cartd ¢xrt under SectK)n 145 of the Ad and in carrying oul my examinatK)n I have foWyhEd all applKablti DredK)ns gibtn by the Charity Commk8sion urKl$r Section 14515Xb) of the Acl. Indop8ndent oxamlnefs ststenwnt I have completed my examination. l nrni thal Th) m•tefW mattors have comg to my attentKin In ¢onnection the examInatn gmng me cau8e to that in any Matw1 re8P8Ct accounting records were not keFI in rnsped Of1 Tn4t as requed by PAdK)n 130 aft ., or the P•xount$ do not ac£ord with tho86 records; or thè aCLounts th not conM)ty with the applKablts reWireff¢s concerning th& fom) and content of a)Unts 581 out in the Charrtieg IP£counts 8nd Reports) R8guL1tis 2008 other than any requirement th•1 the 8¢¢ounts give a true and fair view rs not 8 matter considered as part of an independent examinalion. I have concemi ar c(wn8 other rMtter8 in connectkin with examination to which attention Should be drv4m in thi• report in (wder tr> enable a proper underslarKling of tho ac£ounl8 lo be r¢ached. Thoma8 Landers BA FCA Morgan Griffiihs LLP Chartered Accountan18 Cross Chambers 9 High Street Newtth¥n SY16 2NY 25 January 2025
Noonan Syndrome A¥¥oclatlon statement of Fin8n¢lal Actlvt11•6 forthe Year End•d 311Slareh 2024 31.3.24 Total nds 31.3.23 Unrestrfded nd Restricted funds Tolal INCOME AND ENDOWMENTS FROM Dortat)n$ and legacies 30,OM 330 30.374 30.268 Charltablo actlvlties Research Support NeNvork Awareness 8.021 8.542 10.042 Investment income Other income 53 3,025 Total 30.097 330 30,427 59,898 EXPENDITURE ON Charftable actlvltles Research Support Netsyork Awareness 5.677 11.322 11.333 20.000 25.677 11.322 11.333 6.474 49.832 24.168 Totsl 28.332 20,000 48.332 80.474 NET INCOMEIIEXPENDITURE) 1,765 119.6701 117.9051 120.576> RECONCILIATION OF FUNDS Total funds brought loard 57,513 40.278 97.791 118.367 TOTAL FUNDS CARRIED FORWARD 59,278 20,608 79.886 97.791 Thè notes form partoftheso financial statemen Page 6
Noonan Syndrome A8¥0clatlon Balance Sheet 31 March 2024 31.3.24 31.3.23 Notes CURRENT ASSET8 Debtors Cash at bank 10 28.901 70,396 6,565 96,028 99.297 102.593 CREDrroRS Amounts falling due wf(hin one year (19.411} (4,802} CURRENT Assgrs 79,886 97,791 TOTAL ASSETS LESS CURRENT UABIUTIES 79,886 97,791 NET ASSETS 79,886 97.791 FUNDS unstricted funds Reslrthd fvnds 13 59.278 20.608 57,513 40.278 TOTAL FUNDS 79,886 97.791 The finan(3al statements were approved by the Board of Trustees and authorised for issue on 25 January 2025 and were stgn8d on its behalf ty.. Sharon All8opp-Truslee The note¥ form part ofthese finandal statements Page 7
forthe Year EndBd 31 March 2024 AccouiillNG POUCIES 8asis of preparlng the finan¢lal Ststernents The fin8nci81 statements of the charity, whth li a berffl entity und8r FRS 102. ha been prepared in accordan with the Charilies SORP IFRS 102} 'Accounling and Rep)rting ty Charibe8". Statement of Recommend PractKe applicabk to Charrt weparing their accounts in aeeordance wf(h the Flnancial Reporting Stsrnlard applicabl& in the UK and Republic of Ire18nd IFRS 1021 (effective 1 January 20191.. FinaNaal Rwting Standard 102 The Financial Reporting Standa opplicable in the UK and Republ of Irelatwj. al the Chanlies 2011. The finanoal statements have begn prepared Under the hi5torvl cost nrnIN. InGom• rncognltlon All income Is recognised in the Statement ol Financkil ActNibes I)n the ¢hanty h85 enlillement to the fvnds, it is probable that the incOff be receNed and the amount can be measured lbly. Exp•ndlturn Liabilities are rn0)gni1 88 expththrn as Tr as there is a legal or Obl81 commilting the charity to that eypen(Iture, it WObab that 8 transfer of econom benefrts WUI be required in s8ttlement and the amount of the obligakn cw be measured reIkn1b. Expenditu 18 accounted for on an accNaL8 b88is and has been dassified under headings that a99al0 all c081 related to tho ¢aleg¢)ry. Vth8re costs cannot be directty ottriLwted to particular he•Jing8 they hove been allocated to KtNilwa on a basis consistent with the use of resources. T•xatlon The charty is ¢x¢mpt from tax on its cherilable adv4ilws. Fund accountlng Unrestricled lunds can used in aCcA)th wlh the th•riiablo obj¢(apffjs al the di8Cntlon of the trustees. Reslrfcted funds can b8 used ts p41t¢ular mtrthd Purpo wiihin the rJeCtS of the ¢harity. Re8lriclions arise when specrf*d ty the (k>nor or whon funds are rai1 for pathuLqr rèstricted purpose8. Further explonalion of the naturn and puw of eaol fuThd is in the notes to the financlul statement8. DONATIONS ANO LEGACIES 31.3.24 31.3.23 Donations Gift aKI 27.784 2,590 27.341 2,927 30.374 30,268 P4ge B contin&...
P4ot•# to th• Flnanclal Slaternonty. cont•nued forlhe Year End•d 31 March 2024 INVESTMENT INCOME 31.3.24 31.3.23 Deposit ac(x>unt inlertst INCOME FROM CHARITABLE ACTMTIES 31.3.24 31.3.23 Adpiity Research Supp)rt Netsw Avareness Grants Grants Grants 8,021 8.542 10.042 26.605 Grants Ceived, inchjded in Ihe above. we as folkyw•'. 31.3.24 31.3.23 Novo Nofdth Lwnited Sense . The National Deafolind and Rubelkg As8od•t Sl George's HO81 Charty 10.105 8.500 8.000 26.605 CHARITABLE ACTIVITIES COSTS Direci Cost81gee )*61 ¢)Mts Ise• Resoaf¢h Support NetIA Awarenes3 25,346 10,660 10.671 331 25.677 11.322 11.333 46,677 1,655 48.332 DIRECT COSTS OF CHARITABLE ACTivmES 31.3.24 31.3.23 Postage and stationery Pmmolh?nal matefial Sundries Fami day Travel expenses Computar & IT support costs Chanty Manager Researeh AdmInistratn eosls Staff & volunteer training 1,350 450 1.035 878 35.635 187 14.957 18,783 595 1,949 16.747 20,000 5.388 198 6,666 46.6n 78,809 Py9
Note• to th• FInala1 Ststèments. eontlnuad forts Year Ended 31 &larch 2024 SUPPORT COSTS 13 24 24 318 638 638 331 662 Support Neiv Awareness 61 1.594 1.655 Bas of alkjcaknn Based on tine Based on time Based tVT P•lanagemnt Finance TRUSTEES. REMUNERATION AND BENEFITS There were rn trustees, rune[knn or other benefits for the enc 31 March 2024 nor for tr year ended 31 March 2023. During the year no truslees reimLwtsed fortrabeliNJ expenses { 2023- nfj. COMPARATIVES FOR THE STATEMENT OF ANAP4CIAL ACTivmES Unrestrthd Resth"c*Y Tot lunds INCOME AND ENCX)WMENTS FROM 26.681 3.$87 30,268 Charitable adivltles 21 42 42 8,000 8.500 10.000 8,IY21 8.542 10.042 Support Neiw)rk 3.025 3,025 Tolal 29,811 30.087 59,898 EXPENDffURE ON Charitable activities Research Support Neh Awareness 6.474 18,045 14.168 6,474 49.832 24.168 31.787 10.000 Total 38.687 41.787 80.474 NEf INCOMEIIEXPENDITURE {8.876) {11.7001 120.578) RECONCIUATION OF FUNDS Tolal fvnds brought forward 66.389 51.978 118.367 Paqe 10
Notes toth• Fin8nci41 t•Mts. continued forthe Y¢ar Ertded 31 Alarth 2024 COMPARATIVES FOR THE STATEMEKf OF F14AN ACTivmES. continued Total rJ fvnds TOTAL FIJNDS CARRIED FORWARD 57.513 40.278 97.791 10. DEBTORS: ApiouKfs FALUNG WE WITHIN 0 YEAR 31.3.24 31.3.23 Trade debto Accrued inccne Prepaymnts 10 8.169 20.722 S.599 28.9)1 6,565 11. CREOITORS: AMOUNTS FAWNG DUE ONE YEAR 31.3.24 31.3.23 Trnde Other uediio 3,902 900 18.511 19.411 4,802 12. ANALYSIS OF NET ASSETS BETWEEN FUNDS 31.3.24 Totsl 31.3.23 Tot nds Currenl assets Currenl liabilth'es 78.689 {19.4111 99.297 {19.4111 102.593 (4.8021 59.278 20.608 79.886 97.791 13. MOVEMEpif IN FUNDS At 1.4.23 in frjnds 31.3.24 Unrestricted fund5 General fund 57,513 1.765 59.278 Restrlcted funds Noonan Syndrome Researth Fund The Andrew Fami Research Fund Support costs 30.255 10.016 (19,670) 10,585 10,016 40,278 (19.6701 20.608 TOTAL FUNDS 97.791 (17.5) 79.886 Page11
Notes to tht Fina1¥] Sla*rnents.eonllnl forthe YearEnded 31 Mavch 2024 13. MOVEMENT IN FUNDS- continued Net moNpmnt in funds. induded the abM are as folknvs.. in fund¥ Unregtrfcted funds General fund 30,097 {28.3321 1.765 Restricted funds Noonan Syndrome Research FuThJ 120.000) 119,6701 TOTAL FUNDS 30.427 (48.3321 I17,5) Comparatives for movement in funds At 1.4.22 31.3.23 Unrestrl¢ted funds General fund e6.389 (8,8761 S7.513 Restricted funds Noonan Syndrome Reseath FuThJ Families Event The Andrew Famity Research Furvj Support costs 21.955 20.000 10.016 8,300 120.000) 30.255 10.016 51.978 (11,7001 t40278 TOTAL FUNDS 118.367 120.5761 97.791 Ccrfnparati¥e net m0ven in fvnds. WlUded in the atxm are as folhyK: in t15 Unrestrlcted funds Generdl fund 29,811 (38.687) (8.8761 Rgstrlcted funds Noonan Syndroffle Researth Fund Families Event SupF4)rt costs Awareness 8.300 8,500 3.287 10.000 8.300 (20.000) 128.500) (3.287) 110.000) 30.087 (41.787) {11.7001 TOTAL FUNDS 59,898 (80.4741 120.576) The Andw Fomity Research Fund.. Pago 12 COntinJ...
Nol• to the FIn•101 Ststwnents. contlnu•d for thg Ygar Ended 31 2024 13. MOVEMEKf IN FUNDS . contEnwd Thls is io fund medtil reSeah dirg rnlevant to Noonan Syndmm. 14. RELATED PARTY DISCLOSURES During the yearthe made (knalw)ns to the charity t(ts11119 £1.440 2023: £1.590). Page 13
O•lalled St#t*nentol Fbmncknl Actsvitso• forthe Year Ended 31 Marth 2024 31.3.24 31.3.23 INCIXIE AND ENDOWMENTS DonatlonB and legacl DonatM)ns Gift aid 27.784 2.590 27,341 2.927 30,374 30.268 Investmont Income Deposii account inler¢st 53 CharEtsblo 0cOvlt Grants .605 (hOr Incom• Other Inco 3.025 Total Incoffllng ro1¢0• 30.427 59.898 EXPENDITURE Ch•rhabl• •cthltle3 Postage and stationery ProMotn31 mateiial Sundries Famity day Travel expense8 Computer & IT support costs Charity Manoger Research Adminmlralion e<>sts Staff & volunteer trathilThJ 1.350 450 1,035 878 35,635 187 14.957 18.783 595 1,949 16.747 20.000 5,388 198 46.677 78.809 Support ¢o•ts Flnance Bank charyes 61 Govemance costs Indemnty Insurance Accountancy arwj lagal fees 694 669 1.594 1.665 48.332 80,474 Net exp•ndltur• (17,9051 120.576) Pwjg 14