RLGISTLRED CIIARI'fY NUMBEK: 1191179 )ort oftlle I'ru$tees gnd Unm Ited Finkntifjl StAttm fDrt 1st Jul 2024 Farries Kirk & Mcvcan Diiiiifriib LnlLrpris¢ Park DUMI',Rifssi.IlRE DGI 3S,I
R¢port oftho Trust¢4s Ind¢p¢ntl4n¢ F.x*minEr'# Report Stattmtnt of b"IhLJJ¢l#l Aetlvltlts IIHlnnce Shcct Not¢$ to th¢ FInntIn1 StRtom¢nt$ D¢tDIIEd Skntement of Fill(11 Activiti¢
ACF SMA rt of tho'l'rust ror tht YeAI' Li Jlst Jul 2024 Thc li'ustccs prosci)t ilieir r¢puri wlth Ilic financial sialcincniy of Ihe charlty for the yellr eiidcd J 1st July 2024. Tlie tYust¢¢s li&v¢ Adopted Ihe provisions of Accounling and Reporting by Chariti¢s', SIui¥m¢nl uf RL¢oinmLndLd Prllclicc applicablL lu cbarilics prcpariiig Ilicir accouiiis in ttc¢ordaiice willi Ihr financial Ilcporiing Stund4rd opplical)Ic in Ilic UK and Republic ol. lielund 11.'RS 1021 l¥tt¢¢liv¥ I Janiillry 20191. OBJb.CTIVli S AND ACTIVII'ILS ObJe¢tlvc$ od Jlm5 Thc objcciivc% of ilie L'IO or¢ IhL rLliLfof&ickiic55 and th¢ PiLservaiion of heth. iii pdrticular but not ¢x¢lusiv¢ly by,, la} lh¢ rclicfand Ircatmcni of p¢opl¥ iviili Spintil MLiiculur Airophy., Ibl IliL prvittoliTrn and support Of re%¢&i'¢l) into Ilie causL, IrL'lllmcnl nnd possibl¢ pr¢v¢nllon of Splnal Mus¢ulllr Airophy and thc Publ1¢ bin¢tit Lauiicli ol'ivch%it¥' Iiiid (JLinulion mcchani5n) Rcgulttr sOCi41 mcdi) eiigllgcmeiii Various ¥vents 11 aciivitics to rai5c fund.$, .e.8. charlty walk, ¢otrce niornings. puintittg aiiclion Tho fir%1 acliviiy Ilie ¢liiirily IS supporting 15 clinical rLscarch willi I'e8llrd$ Ilie obj¢ciiv¢ ofih¢ ¢liariiy ACIIIEVEMEN'Y AND PERTrORMANCE Iiitro(IIiciioii'. I'h¢ ACE SMA EloaTd of 'l'i'ust¢¢s is pl¢usid 10 pr¢s¢nl Iliis reporl, high11111n8 our orwdnibulion's activi11 and financial pci'forinw)t¢ durin¥ lh¥ fisciil y¢ar cndiiig 31st Ymly 2024. '1'hi$ repon gims io i)rovid¢ 51uk¢liold¢rg willi ali ov¢rvi¢w of our Mffissioii w)d Objecliv&s.' ACE SMA rctnains cofflinittcd to roisiiig mnney in ord¢r ID fuiid cliiiicAI re.8enrch iiito tlie cnli4n¢¢d ben¢f)Is or bc5poki aiid rc8ulai' pliysiotli¢rdPy for cliildrLn ivilh SMA, who ar¢ also Ircclving tlitt disctise mod5fying trcaiimciits. Throtsghojt th¢ y¢Lr. w¢ hiiv¢ workcd diligcnLly 10 aclii¢vi our obji4liVk& IiiLVi fulfillLd oui. cummilinrnt to rai5c rtindy fui. Ihc rcscarch projcci iviili Professor l.aurLiII Serviis. A Monoccntri4 Prospcciivc oiid l.ongiiudiiial .8iudy invesiigaliiig Ili¢ teasibiliiy. w¢epillbiliiy. saf¢iy and cifiL&ncy of an opiiinii¢d r¥httbillllllion prugram IOT Ircalcd paticnly wlth SMA conipared ia the currttJ)t rehAbilltaiSon progrnm In Urtiied Kingdom, AccolpI1$h]lltI7I$'. Diiring ihe reporiing perlod. ACI," SMA lias b¢¢r) working hard witli Profos%or lJaurcnl SLrvul% ui Oxford Ilniv¥r5ily C17allcn8CS &iiid Mitl8diiuii%'. WliilL LLlcbi'aiin8 OUI. SUCCCSS¢5. wc also fa¢Ld clialleiigey %ucli &% .¥horta8¢ of pct)oiinel. We lJiipl¢sn¢i>lLd oilier chariii¢s workiiig lowRrds th¢ goal. I'.inanci81 O¥¥rvi¥w,' OUT finuncial p051tion r¢inoiii$ birgiiB, 'I'h¢ pnid¥iii munag¢rnLni of r¢souT¢e$, goiipl¢d wilh Ihc %encrosily of our doiiois aiid pai'tll¥rs. Iiu5 ¢nttbl¢d u$ to tn4iiJthin fin4Dclul 5thbilily. Grunls Cuntiibiitioii%.' We cxpir81 our .8in¢¢re gi'aiiivd¥ 10 oiir donors. SLipporlirs, and partners for Ih¢ir ¢onlribulion5. ThLir iJivav¢riiig uppoi'l lias b¥¢n iD51rurncntul iii funding th¢ pionccriiig study iviili lJrolc%sor Lauirnl 8ervui5. ProgrDm14ighligh15.' Oiir pix)gfani.% coriinu¢ 10 Iii&k¥ o posillve IrnPII¢I. ptirli¢111*rly in Ihc ir1d ofspinal Mu5culiir Atrophy. Throu8h Ihc ACF SMA projLLI. Iv¢ will bc ablc to provc that hc5pokc ivcckly pliy.8iolhcrnpy 1.4 1)LigLly benLfici&l to children aiid udulis ivho sun¢r ri)Jin Spiiial Mu¥culai' Alropliy. riiiiire Outlook.- Looking aliead, ACI.. 8MA i.fj POi8¢d for cuniii)Li¢d growth iin¢J inipiici. Wk llr¢ ¢otnmiti¢d Iv £onliniiin¥ lu support IhL voi'k. ol. Prof4ssor sirvls ttnd his len axfol Iliiivtrslty. Tlie 1$ ¢onfidcnl iii Ihe orgon15aliort's tsbility 10 niiviwile fuiur¢ Lhllllen8es and achi¢v¢ bilslllincd succc55. Appre¢iniion-, Mie Bollrd ¢xpress¢$ rLppr¢¢lalion ID our dedicoltd tru51ees. volunleLrs, Ind biipporlers who liuve coniribui¢d Io trilT success. CoTrLIu5ion.' In cottclusion, Ihe Board of 'l'ru%i¢c% remains ¢ommitlcd lo IV&n¢lA8 Ih¢ misyion olACE SMA. W¢ look forward lo anothcr yeai. ot positive g¥owtli, impuLI. Jnd Collaboration. P8¥ I
lauhi1 ai4ul} IQU WIINANCIAL KK¥ILW ph15t Jlcb¢CoN¥t Pl DLI'.F-: Duijia
endtnt TrdxAmrner's Re ort to the Trustee% of Acb. SMA Indtpeiidtiit t¥AMln¢r's r#porl to th¢ tru5toes of ACE SMA r¥pDrt lo thc chw'ily li'u%lco$ oil Iny eKalnlll4ltioii oftli¢ R¢¢ounis ofALf SMA l¢h¢ I'riisil loi tli¥ y¥#r ¥i?d¢d 31%1 July 2n24. Rrspthnslbllitl¢s and bas15 of report As Il)c chariiy Iru.%iccs ot. Ili¥ -11.1151 yoil nr¢ SponSIbl¢ for IhL pr¥par4tioii of lh¢ lleCOLinlS in b¢eordancc wilh 111¢ r¢quir¢rneiilS of Ihc Chthrilics Arl 2011 ('thc Act). I rcpnil in r&%pcct of iny ¢x4ininAlioii vfth¥ Trusi'5 aLLounl& ctirriLd oul undcr Scclioii 145 ofih¢ ALI aiid in currying oul my cxllminaliun huvc followcd llll applicable Dir¢¢tioiis giv¥n by lh¢ Chorily Commissivn und¢r S¢¥iiOn 14515llb) ufili¢ Arl, IniSep¢ndont cxnmiTr¢r'5 Stlltement I IIAve coinpl¢knlLQ my LxamiiiJlion. I confirin Ilial no matcrial niallers havc Lome lo my altenlion in conncclion wilh Ihc Lxamination iVlll8 niL ¢ause bclityvc 11111t in aiiy mol¢riiil r¥.4p¥II-. a¢¢oiinling rc¢ord& wcrc not kcpL in respect Df ilic'l-rusi r4uired by Seciion 130 of Ihc Act.. or the Liccouiili do not accord with Ihos¥ r¢cords', or Ili¢ a¥Lounis do iioi comply iyiih ilie applicable I'LyuirLinent% toiit¢rniii8 form and coiit¢nt of accounts s¢1 oul in le c11.111e.q mmller consid¥d fjs purl a(aD indcpcndcnt cxoiiiiiiation. report in lo ¢nublc J propci. undertanding ol'il)c accDuiil% lo l)c I'caclicd. David Mstchcll, IIA, CA l.'urri¢s Kirk & McVLai) DIIMI',IIILSSI-IIIIL DGI 3SI 2nd June 2025 Pilg¢ 3
ACI,:.SMA tnt or tht Ycnr Lndcd IA£ 1s1.jul 2024 2024 Uiir¢strl¢*d rund 2023 TalAI runds Noi¢y INCOMEAND ENDOWMENI'S fiROM 5,680 4,977 8,496 23.804 574 InvLsimeiil Iiicom¢ Total Id.991 29.355 XPII Nl)ITURF. ON Raisin fuiids 174 275 Charitabl¢ llctivitics ACI-: SMA 152.798 2.413 152.972 2.688 NLT IWCOMEIIF.XPTr:IYDJ'I'URLI 26,067 RECONCILIAI'ION OV FUTr4DS roitsl fund5 bruught forivard 175.183 148,516 'I'O'I'AI. FLINI)b CARRI&.J) FORWARD 37,202 175,183 Mie noies forin parl ofthese fiiiuii¢inl blatLInetsL% Pugc 4
'r>i4 LKIIL)l-I'()It¥ Ism) 20:. rth'ALAS¥1.:'1'I 1,i.'s% r.i.'RRF.hTI.I, 'r.T $$LIs 'I'l)Tkl.FL%DS oi
AC. SMA otos to IAI Skntomo for the Year bndtd 31st J1 2024 ACCOUN'J'IYI Ci I>OLICIFS 114$1$ of i?rrparina tlic fJnnnciAI stThtoJnents 'I'lic tinaiiciol .%t4l¢m¥n15 of Ihc charilys ivliich is a public bcncfit Lniity undcr l.'II% 102. have i)een prepllred in accoi'daiice willi Ilii C.hariiicg SORP IF'II.% 1021 'AccounlinB uiid Rcporiing by chrill¢s.. SilllemLnl of RccvmmendLd PruciicL •ppliciibl¥ lo Ii¢lund {fRS ia21 Ictrcctivc l JaiiuAry 2Q19}'. l.'inun¢iol R¢porting Siandnrd 102 'fii¢ I"'i¥ian¢ial R¢porting SiandJrd ippli¢abl¢ iii lh¢ UK oiid RepubliL of Irclwid, Jnd th¢ Chllrit1¢5 Att 2011. 'fhc fiiiancial .%iot¢t)Icnts hov¢ betii prttpttred Ui¢ Iiisloriclll co%1 conveiition. Jneom¢ Lxpenditurt LxpLndiiure. li i5 probllblc Ihai a IransfcT Df ccoiiomic bciicfils will bc rcquircd in %ciilcincnt and Ihc uiiiount oftlic obligalinii cnji bt me&%ured I'cliably. Expendllure 1$ lle¢ountcd for on ffj accruals bllsi5 h85 bccn clrtSsifiEd undu hcbdtng¥ Ih4t llggr¢8lllt ull co&t rclated to ilic cal¥goiy. Wh¢N coslb ¢lliinoi b¢ dillY Lliribuied tD P&rtILular heIngS IhLy hive b¢¢n &lloullied io Rclivili¢s 011 bosis ¢on¥i51cnl willi ilic u%c of re%Duircs. Gr¥1% orreird subj¥c( to Londiiions whiLh havc nui beLll MLI al tlic ycur Lnd dlltc urL notcd L5 u Lommilmenl bul not uccrucd a Thc ehai'ity 1$ cxeinpi Iroiii lax on lis Lhariillbl¥ U¢liVlli¢s. Fund ¥tctountlng Iliir¢sii'i¢ird lunds can bc uscd in accordancE Wlth ihc charilablc objcclives ai Ihe discrelien ofilie trustccs. RL51rici¢d funds can only b¥ used lor particular rcstricled piirpL>ses ¥villiiii Ilie objecis of ili¢ charity. R¢$irieiions r¢fiSL whch spL¢ilie(I by Ilic doiior or i¥lieii fuiid* are ral%ed foi. particulai, ILsirici¢d purpos¢s. Fiiriher txplanolion ofiiiL n&lur¢ aiid purpo8¢ or¢¢h fund is inclvdld In th¥ noi¢s lo ili¢ fin1¢)1 sl&lem¢nts. o'riiEII I'IiAJ)ING ACTIVITlb.S 2024 2023 rundr4isin¥ ¢vcnls 11.496 23.1104 INVF.STMENI' INCOME 2024 2023 574 Pagc 6 Continued...
L% t IliL' FInn lie Yexr Tr.1 21)24 TRUSTF.FS' REMUTr4EIiAI'ION AND Ilb.NLbl'l'S Th¢[¢ w¢r¢ no truslco%' rcmunciuiioii or olli¢r b¢ii¢f11s lor Ilie y¢ur ¢iid¢d 31st Jiily 2024 iior lor ili¢ y¢or ondcd 31 sl july 2023. Tru$tECS ¢xpcnses Tlitr¢ ivcre no ¢rusices' expense9 pId r(Jr the ycor Lnde(J 3161 July 2024 noi for lh¢ y¢or bnded 3 Isl July 2023. COMPARATIVI.S FOR'I'IIL SI'ATLMFN'I. OTr. FINANCIAL ACI'IVITILS Unre51ri¢l¢d fui)d INCOMF. AND ENDOWMEIYTS bROM Don&tions llnd le8ati¢s 4,977 23,804 574 Inveslliieni income Total 29.355 V.XPb.Nl)ITIJIIV. ON Rai51ng fund 275 Charitable n¢tivitieB ACC SMA 2,413 2.688 NET INCOME 26,667 RECONCII.IA TION OV VlD5 148.516 TOTAL FUNDS CARRIED FORWARD 175,183 DEBTORS- AMOUN'fs FALLING DUTr. WI'I'IIJN ONb YTr;AR 2024 2023 VAT 573 Pase 7 ¢Olilinu¢d...
ACLSMA CREDITORS.. AMOUN'fs Tr'ALI,ING Dub. Wll'IIIIY ONI,- YEAR 2024 2023 OihcT CTcditors 960 480 MOVKMEN'f IN FUNDI> Nci movein¢iit in fund8 Al 31.7.24 Ai 1.8.23 nresÈrl¢ted funds GcneTal fuiid 175.183 <137.981} 37,202 TOI'AL FUNDS 175.183 37,202 Nrl movcmciit in fuiids. includLd iii 1114 abov¢ ore as follow$'. InLomin8 rc.iources RLsour¢¢s Expeii(ted MovernLnl Uttr¢strlct¢d funds 14.991 1152.9721 TOTAL TrUNDS 14.991 1152.972) 1137,981) Contparatlvos for niovcment funds Nel MOVLinent in fund5 Al 31.7.23 Ai 1.8.22 VDrL'5lrlctrd Gcncral flind 148,51 26,C)67 175,183 TO'fAL b UNDS 148,516 26.667 175.183 ConiptLraiivL ncL Inovimcnt iii fiinds. iiielud¢d in Ihe Hbov¢ are us follows., Incoming .4011r¥¥s Rcsoiirios ¢xp¥n¢JEd Movcmcnt UDrf5tri¢ted fund5 GLIiLr&l fund 29,3JS 12,6881 26,667 'I'O'I'AL b UNI)S 29.355 12.6¥81 26,667 Pa%L 8
ACF. SMA ror the Y¢ilr Ended 315t Jvl 2024 MOVKM,NI. IN PUNDS- ¢ontiau¢d A ¢iirr¢iii yemr 12 In(Fnilis atjd prior ycar 12 nionills combincd position 15 as follow&'. Nei Ai 31.7.24 At 1.8,22 Unr¢5tri¢ted fuTrdB G¢n¢rAI fiind 148,516 37.202 TOI'AL bUTrIDS 148,516 37,202 A ¢uritnl y¥ur 12 znonth5 and prior ycar 12 months combincd nct movcmciil in fLind8, includcd in IhL &bov¥ Ar¢ as follow¥', Incomlng rcsourccs Re50urccs CXPLndLd Mov¢mLnl Unrestrlct¢d tiejieriil fuiid 44,346 (155.6601 TOTAL TrUNDS 44.346 (155,660) II&LA TLD J>ARTY DISCLOSURES '1.1)¢ ivcr¢ no r¢lai¢d party IraTrsa¢iioTrs for ihL yiiir ¢nd¥d 31 si july 2024. Pugc 9
r tIiL' YL. 2024 2023 INCOMK AND FNDOWMENTS Doniltion5 and legacies Doiialion8 S,680 4,977 Oihtj. trxdinH Activitle 8.496 23.804 Inv¢$tm¢D¢ lrtromo Dcp051t acco( iiiiei'¢si 815 574 Tot#1 Incomlng r¢iouree8 14.991 29,355 ExfiNDI'fuR Rii5ing dDnxtionJ nnd legA¢le %undi'i¥5 Auctioii lot COS15 174 275 174 275 Insuranrc Adverlising 292 (>6 281 122 144 216 Wcbsiic co$is Giving.cgrn f¥c Giv¢rEy 315 216 1,395 15Q,aQO 152.284 763 SupDort CDStJ VlnthDco Bank cliargcs 34 12 Cov¢rnRnco tosts Accouniiiiicy fces L¢Ktil Ic¢¥ 480 48 480 ,638 Totul r¥'sOu¢S expEndcd 152,972 2,688 N¢1 lexp¢ndl¢uroyincome 26.667 Thiy pug¢ docs not form part ofih¢ staiuiory fliian¢lal sitti¢m¢ttL% Pa8e 10