Company resistilon number. 07000073 Chlty registration number. 1133182 ADVOCACY FOR NEUROACANTHOCYTOSIS PATIENTS TRUSTEES, REpoiYf AIYD FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 AUGUST 2025 Orcadia 1.3 E&8tRo#d Kirkw811 KW15 IHZ
AdV¢y For N¢uToaeanthoeytosts Patients ConteDts Page Tru5tees' Report IndepBnd¢ni Examinerfs Report Staternent of Financial Acttvities (]lUdIng Inm¢ and ExpenditureAccowit) Comparative Statement of Fin8ti¢ialA¢tivi¢ies (in¢ludin8 Incijrne and ExpenditureAccount) Balance Sheet io Not¢s to the Finoncid Suemertts
Thth, R¢port ForThe Yer Emled 31 Allimt 2•25
The tnte¢S present their relrt and the fu¢]7 fortheyar ended 31 Au8USt 2025.
Objefdva MndAttlvltl#
TheAdvocacy for Namwtho¢ytosis htients benefits a group of around the world who suffer from two very rare
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AdYo¢a¢y For Neuro8unthoeyto8ls P#tittits TTYStees' Report (eoDtlnued) F•TThe Year Ended 31 Auwigt 2025 MalnAtbitvements- eontiDued l) The 12th global NA Symp)$ium was plonned for September 2025 in Laus Switzerlon(L Scientific and patient- oriented sessions will be held over three days. 2) The Advocacy continues to sUprt tho ¢mtion of an international patient re8i5ty in which consistent hi5torie5 of onymous. diagnosed patients w be studied and eventsally b¢ a source of l¥idS for trials. The existent NA Registy is h05ted under the European Huntington Disease registry (EHDN). A separat¢ r¢gi5ty of VPS13A mutstions is hosted within the open.access Leiden Open Variation Database (LOVD). 3) Th¢ third Glenn Irvin¢ Priz¢ is to be preseDt¢d at the 12th Symposiym. The Calendar of the process to find the winner ontinually being coordinated by the Advo¢w. consultants and re5¢als. This prize is both a rewaTd for excellent Wotk and intended to ¢nUrage fvrther work in th¢ study ofNA $yndrom¢5. Financial Revlew Fin#ntial Positio Th¢ charity end the year wlth resery¢s at 31 Au8USt 2025 of £41.133. The Euro ae¢owit has been Closed and had no )utstanding balance. The charity de$iwba¢¢s funds spe¢ifi¢Ally for any grants where r¢s¢#rch has already Commen1. Reserves Polley The Advocatys poli¢y is lo commit its full resowcw to its educational and r¢5earch work each year. The Clwity Ims v limited expenses as th¢ WO 15 done by one hll tim¢ paid staff and volunteer4 all using home offirx fllities. Golni Coneern Futsr¢ Pl*ns The chartty plans to ¢tsntinu¢ to focus on: l) Communicating with patients and their families through personal contact by email. sori41 media channe15. phon4 visits
nd through the website to inc*e the ¢ommuni¢&tion bett¥een patients, families. W¢ will ntInue to bring n¢ws of
d¢veloping th¢rapi¢s such as deep brain stimulation and to present the opportunity for patt¢nts to help with blood and tissu¢ don#tion5 forexpanding research. Patients, families eXchSe messages of experiences and wn¢¢rn. 2} Pmidin8 SUPP)rt for cornmuni¢ation and tissue a¢quisition to the rel#¢ research at RostocK Veron4 Milan. Stony BrooL Mount Sinai Michigan universities. 3) Pmmoting and supporting new $cientifi¢ T¢S¢ah. We ept 8i¥nt queSts on an ad-hoc basis pnd ¢Yaluatethem through th¢ ReseArch Advisory Committee IRACI. 4) Makittg fvture provision in its research 8rnnt ¢onditi¢)ns to ¢ontti?ue to en¢oura8¢ collaboration between retrch¢ 81obally workin8 in th¢ lipidomics field and other relevanl areas as they emer8e. 5) Continuing to expgrtd registy development in conjuttction with newer oppoiinities in the field and to coordinats with th¢ US Adv8¢Y. 6) Lthing the next tall for the Glenn bviat Prize to encourage young resetrchers and 3¢i¢ntists to work in nre dise8se Page 2
Tt' Report (eontlnued) ForTheYar ELded 31 Autust 2025 Gokng Coll¢•rn. tottthityed 71 Setting the Sympxjsiuw in locatioDs to encour•8e intertIO exch¢ of ideas and neiworking opportunities among all participlts. Young fa¢ulty 5thents use the opp)rtimity to present th¢ir work dutillg the Fster sessiorts. The meetings a]so ifford the scientists an OPWJTtsmity to m¢¢t Fiatients fi[st4W - in lau58n. switzerl in SEPtember 2025 and in W&saw. Poland iti 2027. Patients 9] family m¢Mi5 will ¥aiti hear the type of re5ear¢h BVEk 1¢ is owin8 the AdVa¢y is supprtingthrough research grants. 8) Continuing to C4)mmunik7t¢ and shpre Inftiml iyith the US Advow to ¢Kd the efforts of fundrntsing. communi¢atin8 with patients and providing 514>EKJrt for reseth ptoje¢ts. 9) seah1n¥ for with umbfflla aroup5 and tinEss¢$ willin8 to • th¢ ehtrity by e4)ntinuitt8 our relationship WithA5P1 Bioscien¢4 Bexon and Eumth. Structur& GoventhDte And Management Governlng Do¢wD¢nt mpany. limited by guarant¢e as defllKd by thr Compfini¢s Act 2006. Trtsstee Selettion Mdbodj New tru5tXs w¢ d¢ded sokly by the PTw¢nt tntyes tntstees will Ix subj¢d to limited terns ofoffice. There is one fvll time employ¢¢ who nun¢UrCd on 3 May 2023. Reference nd Admillistrth Drt Mr5 Niwla K¢at Mr5 V]r8inia tryine Miss Mary L¢igh.Wood ProfessorAthi8n Danek Mr Neil Prirx (resied 24109f2025) DrP¢ter Mills cOmnY Se¢re¢4ry Mrs Vjrginia bvin¢ CbarltyNumb¢r 1133182 Comp*tty Ntymber 07000073
Advoea¢yForNeuroatalltboeytosis P#ti¢ntS Trustees, Report (eonthilltd) ForTheYeAr Ended 31 August 2025 ElldependeDt ExaDthier Doris Hut¢hisott CA, A Orcadia 1.3 East Road Kirkwall Orkn¢y KW15 IHZ Page 4
Advocacy For N¢urnxt8nthocytOSi8 PtleDts Tn, Report (cOtinUed) FOrTh¢yr Ended 31 Augu9t 2025 The tru¥tees' report was approved by the boArd of trnstee5 and Sivd on its b¢h41f by: Mrs Virginia Irvin¢ Thwee 4 May 2026
Advo¢a¢y For N¢uroA¢Anthocyt0515 Patlents tndtptttdent EMmltter'i Rop)rt to the Trusttts ofAdvo¢acy For NeuroluthOeyttys1$ Patieots ForTho Year Ended 31 August 2025 I rwrt to the charity trustees on my examination of the accounts of the Company for the year ended 31 Augus¢ 2025. Respowlbllltles ttd BASIS of Report As the ¢haTity tru5t¢¢5 of the Company (and also its dtrectors for the puryh)5e5 of Itwx you are responsibl¢ for the pr¢paration of the a¢counts in N¢¢ordanc¢ with the quIrements of the Companies Act 2006 (he 2006Act'?. Havin8 satisfied myself that the accounts of the COmpY are not reqUId to be audited Part 16 of the 2006 Art And are ¢ligibl¢ for Indepdent examination. I report irt respect of my examination of your ¢lMrity's #CCOUTLts 05 led out under Section 145 of the Charitie5 Act 2011 (tthe 2011 Acl.). tn canyin8 Out my examination I have followed the Directions given by th¢ Charity Commission under section 145(5) (b) ofthe 2011 Ad. Independe1 ExAmilltr's Ststewtht I have completed my examina¢ion. I confinn that no mattets h&ve come tr* my attention in Comection wlth the examination givin8 me Cause to believe= . COunting records were not kept in respect of th¢ Company as required by s¢¢tion 386 of the 21K16A or 2. the CoUnts do not accord with those Tecords. or 3. the accounts do not comply with the a¢¢ounting requirements of s¢¢tion 3% of the 2006 A¢t oth¢r than any requirement that the aceounts 8Lve a and fair view which 1$ not a matter c4)nsidered as of #n independent ex8minstion' or 4. the accounts have not been pr¢pared in accordance with th¢ methods ortd principles of th¢ S¢a¢em¢nt of Recommended Ptice for accounting snd r¢porting by charities applicabl¢ ¢0 Charities prep8rin8their#e¢ounts in a¢[dance with the Finan¢i#l Reporting Stsnd8rd applicable in the UK and Republic of Ireland IFRS 102). I have no conc¢rn5 and have come acro no oth¢r matter5 in ¢onnection with the examination to which attention sIUld b¢ drawik in this rem in orderto enable a proper¢[3¢1nd1ng of the accounts to b¢ reathd. ris Hutchison CA. AfT 6 May 2026 1-3 East Road Kirkwall Orkney KW15 IHZ Page 6
Advoeaey For Neunmcanthorytosts Ptients ststement ofFthnelal Aetfvhles (Intludlts8 Income and ExpendlthrnAecount} ForThe Year Eded 31 August 2025 2025 2024 Unrestrl¢ted R¢strl¢ted Totsl funds funds funds Total Notss INCOMEAND ENDOWMENTS FROM: Donations And lewie5 Investments 65J98 3.000 65.398 5.268 45207 5.037 2268 68J98 2268 70.666 50244 EXPENDITURE ON: Chtritable activitics: Research Grants and Symposium ckher Resources Expended (8,147) (38.428) (8.147) 19.000) (7(Xl) (39.128) (43,008) (7(Kl) (47275) (52.008) (46.575) NET tNCOMEI(EXPENDITURE) BEFORE INVESTMENTCAINSI(LOSSES) N¢t 8¥in$ ittvestments 21.823 1,568 23J91 (1.764) (i) 7.399 7J98 7.842 NET INCOi¥IEI(EXPENDITURE) 21.822 8,967 30.789 6.078 NET MOVEMEwf IN FUNDS RECONCILIATION OF FUNDS: 21,822 8.967 30.789 6,078 Totsl fund5 brou8ht forward TOTALFUNDS CARRIED FORWARD 81.576 121.849 203.425 197.347 13 103.398 130,816 234214 203.425 The notes on pages li to 16 form p8rt of these fin¢181 ststements.
Cornp*radve Statement of kni•l Adivitle5 (IndudiDg ID¢ome ExpdItTeA¢¢0u•tj F•rThe Ymr EDded 31 2025 2024 Unrtstrfeted Restr1£ Tot•1 fun fundj INCOME AND ENDOWMEKfs FROM: Donations le8Acies Inv¢stznMts 45.207 842 45.207 5.037 4.195 46.049 4.195 50,244 EXPENDITURE ON: Ch&itable &etivities.' R¢5¢uth Grants Sjinposium (9.000) (9.000) 137J36) (5.672) (43,008) 146J36) (5.672) (52,008) NET EXPENDITURE BEFOIIE INVFsrmE IA)SSES Net 81ins on inveslments {287) (1.477) (1,764} 7.842 7.842 NET EXPENDITURE (287) 6.365 6,078 NET MOVEMENT IN FUNDS RECONCILIATION OF FUNDS: Tothl fid5 bYouKht forward (217) 6,365 6.078 81.863 115.484 197.347 TOTAL FUNDS CARRIED FORWARD 13 81.576 121.849 203.425 The nokj on 11 to 16 forn? pirt of these fiti1 ststernen
Advocaey ForNeumaeanthoeytosls Patlents Balante Sbeet As At31 Auyst 2025 2025 2024 Unrestrleted Rutrfc¢ed funds fuDds Totsl funds Totsl funds Notes CURRENT ASSETS Debto io 266 266 227 Inv¢stm¢nts Cash at bank and in hAnd li 70.841 34.763 124.446 195287 186.321 6.370 41.133 19.827 105.870 130.816 236.686 206.375 Creditors: Amounts Falllnz Due Wlthln ODe Ye*r 12 (2.472) (1472) (2.950) NET CURRENT ASSETS (LIABILITIES) 103.398 130,816 234214 203,425 TOTALASSETS LESS CiIRREIYT LIABILrfiES 103,398 130.816 234214 203.425 NET ASSETS 103.398 130.816 234.214 203.425 FUNDS OFTHE CHARrrY Restricted Fun& 130,816 121.849 103.398 81.576 Unre5trithd Fund5 TOTALFUNDS 13 234,214 203.425 Pag¢ 9
Advouty ForNeuroautsthotytOSis Pstients B#lan<t Sheet (ttsntiDued) As At 31 August 2025 For the year ending 31 August 2025 the ¢horitabl¢ company entiiled to exemption from audit under seL*ion 477 of the Cornpanim Act 2006 relating to small componte& The members have not r¢qyir¢d the cornpany to obtain an audit in accordance with section 476 of the CompaniesAct 2006. The trustee5 knOwledge their responsibilities for complyin8 with the requirements of the A with r¢spECt to aeeountin8 record5 and the PT¢parntion of aCcots. These attounts have been prepared and delivered in accordanrx with the provisions applicable to companies subjert to the Small MpanIeS regime. On behalf of the bofird Mrs Vuginia Iryine 4 May 2020 The notes on pages 11 to 16 form part of these fllwi¢i81 $tat¢m¢nts. Pa8e 10
AdvouryForNellrnAtallthoeytos19 P8tlents No¢¢s to th¢ FInAtse] Statemellts ForTh¢ Year Ended 31 Avgust 2025 l. Getttr#i IrOrtI•ll Advocacy For Neuroac4ntho¢y51S P#tierts is a company limited by guarantee. incorpor•t¢d in England & Wal¢4 r¢gister¢d number 0700l73 and r¢gist¢r¢d chlty number 1133182. The registered office is. 2. Ac¢ounting Polici 2.1. Basb ofprymratlon of FIDan¢141 St#t•meDts The finan¢ial ststements have been prepared in accordan¢¢ with the Charities SORP (FRS 102) "AcCting and Reporting by Chariiies.. Statement of Recommended Practi¢¢ appli¢#ble to clwities preparing their accounts in aco)rdan¢¢ with the Financial Rep)rting Standard appli¢ibl¢ in th¢ UK and Republic of Ireland (FRS 102) (¢ffKtiv¢ I January 2019).. Financial Reporting Standard 102 "The Finynciji Reportirtg Standard applicable in th¢ UK and Republi¢ of Ireland" the Compani¢sAct 2006. The ckwitsble cornpany is a Public Benefit Entity defined by FRS 102. 2.2. FuDdAeeounthig D¢signat¢d Funds are held in anticipation of requests for financid Support of &rtiV¢ Te5¢arth projecty Approved by th¢ Bo8rd. The wnditiotts of any grant 811ow¢d for an Urtconditional terniination. however. the Ix)8rd feels a morai obligation aft¢r5u¢h 8rnnts Ive beguD. At 31 Au8USt 2025, ther¢ w¢re no active tegevch 8rants ptovided for as Desi8natsd Funds. 2.3. IDeomlDg Regour¢ All InMe 15 r¢colsed in the Statement of Financi Activities once the tharity has entitlemertt to the fijnds, it is probabl¢ that th¢ income will be r¢c¢iv¢d and the amount eart be measured reliably. 2.4. Resour¢e5 Expended Expenditure Liabilities recognised as cxp¢ndituT¢ 4 soon as there is a legal or cOnstrlIve obligation comrnitting the charity to that expertditUTe, it is probable that a traD5fer of economic benefits will be r¢quired in settlement #nd the amount of the obligation can be measured reliably. Exp¢ndityTe is a¢counted for on an ¢nlS b85is and h&8 been cltssified under headingj 888regate all cost relat to the cat¢gory. Vlhere costs cannot be dirertly attributed to particular headin th¢y hav¢ been allocated to activities on a basis consi5t¢nl with the use of resources. The company makes quarterly p4ym¢nts winst the expen$ invoivs of grant recipients. £8.147 WA5 paid to 8rant and symposium recipients during the yw by theAdvocw ofNeutoawitho¢yt05is Patient¥. 2.5. Cash and Calh Equivalents Cash and c&sh equivalmts are IM5i¢ finJn¢i¥l assets and include cash in hand and d¢p05its held c3]I with banks, other short-¢em] highly liquid lrtvestments that mat in no more than three months fmtn the date of acquisition and are readily convertible to a known omount of with insignifiwit risk of chang¢ in vul b3nkoverthaft 2.6. FornlRtt CurreDdes Monetary assets and liabilities in foreign ¢urTencies ttan51ated into sterling at the rntes of ex¢hang¢ ruling at the balance sheet dats. Transactions in for¢i8n cutrencie5 are translated into sterling at the rnt¢ ruling on the date of the tran$tion. Exchange diffeTen¢¢s ar¢ tsken into account in arriving at the opernting surplus. P4ell
Advotary For Nellrnaunthocytosls Patients Notes to the Fin&tselgl Ststewents (continued) ForThe Year Eryded 31 kngust 2025 2.7. Taxatlon The Charity is exetnpt from ¢ax as ail 1¢$ income is ¢haritsble and applied ftsr thaTitsbl¢ pur. 3. Itteomt frnm Don#¢l•D$ Ind lrtides 2025 2024 Unrestrlcted UDreBtrirted funds Donations and gifts 65.398 45207 4. Inv¢stment In¢ome 2025 Unrestrleted Rtstrieted To¢AI funds funds Interest frnm investments Dividends from inv¥thi¢nts 3,IKIQ 17 2.251 3.017 1251 2.268 5.268 2024 Ullrestrleted R¢8tri¢t¢d Total funds fwi nds tnterest from investments 1.924 2271 2,766 2271 Divid¢nd5 from inve5thi¢nts 842 4.195 5,037 5. Analy9L4 of Exptndithre 2025 Grant fvnding of ¢tivities Support eosts (s¢¢ nots O) (see note 71 Activltks uDdtrtakeD dlreedy Tothl Oth¢r Resources Exwd¢d Research Grants and Symposium l.(X18 38.120 39.128 .147 8.147 I.LM)8 8,147 38.120 47275 Pag¢ 12
Advotaey For NeuroacADtho¢yt•sts Patlents Nots5 ¢0 tbe Flnanfial Ststem¢Dts (contittued) For Theyear Ended 31 At2025 2024 GrAttI ndin8 of
ctlvlties Supporteo
(see nots 6) (see note 7) Actlvittes dtrtaken direttly Totsl Other Resources Expend R¢5¢prrh Gtants Symp05ium (iio) 5.000 9.000 38,118 43,008 9.000 (110) 14,0 38.118 52.008 6. Grants Payable 2025 Grnttts to Grants to Instiiutlons IDdlvldu8ts Support eosts Total Other Reg)UTttS Expended R¢5eJr¢h Grants and Symposium 8.147 .147 16294 ,147 .147 16294 21)24 GraDts to Grants to InstitutioDS llldlvlduals Support toits TotAI Other Resou¢5 Expended Research Grants ond Symposium 5.0(Kl s.o 18,000 9.000 9.000 9.000 5.1)00 9.000 23,000 Grants paid to instilution4 included abovA follow5: 2025 2f14 Luci8 D Franeeschi- Verona Grant 9.10 Universita de Verona 8.147 8.147 9.000 Pase 13
Advouey For NeuroAtDthorytosi¥ PA¢ieDts Notss to the Flmtteiil StAte4lltnts (continued) F•rThe Yur Etsded 31 AW 2025 7. Support Co 202S Other Ruoure Expended Employee costs General administrnii 35.863 2,257 38.120 2024 Other Ruour Eipelld¢d Employee eoSfS G¢n¢r•l 4drninistrntion 35.863 2.255 38,118 8. Staifcoits Sthff c4)sts wer¢ •1 followi: 2015 1024 W4¥ 35J63 35.863 No employees r¢¢eiv unploy¢e b¢fj¢fits (¢xCIlinB cmployttpetts)ll ¢0sts) for reFthtin8 p¢riod of more £60.OIXI. 9. Average Iyumber of Empl•ye Avern88 number of employ dwinB the year ws'. l (2024: 1) 10. Debto 2025 2024 Due wlthlD one yur Oth¢rd¢btors 266 227 Pw14
Notts to the FiD*tttiil Stslemeots (c•lllinued) ForTh¢Year Elldtd 31 A•gut 2025 11. CurntAuet Iellts 2025 2024 Listed ittvesknents 195287 186.321 12. Cr¢dilon: Ammts Dllewlthlm Om¢Ye•r 2024 Othercreditotx 2.47Z 2.950 13. Movement kn Funds AsXtI septem1r 2•24 Asat31 ID¢•tyé £4dire Auewt 2025 Ullreutrieted G¢neral.. 81576 68J98 (4Q576) 103.398 Restrfded tsnds 649 117.700 3JO 651 Glenn ITvin¢ Prize Fund forGen¢s 1268 126.665 3.500 121A49 130.816 203.425 70.666 139.877) 234.214 AJa¢l As#t31 Inc•The EipeDdlture August 2024 2025 G¢D¢ral unr¢5trithd fund 81.863 4&049 (46.336) 81.576 ReJ¢rieted funds 651 (2) 649 Pa8e is
Advoeaey For Neurr•4cantbo¢ytoslg P*tleDts Notss to tbe Fiti8ncial Statements (conthiued) ForTheYar End¢d 31 August 2025 Glenn Irvine Priz¢ Fund Jeans for Genes 111.333 3,500 4.195 2.172 117.71x1 3.500 Totsi restrleted fuDds 115,484 4,195 2.170 121,849 Totsl funds 197.347 50.244 (44.166) 203,425 14. Tra8&ctIO wlth Trllittts None of th¢ trugt¢¢g rec¢iv¢d any remunerntion or atty other benefits from th employment with the chlty or a r¢lJt¢d ¢n¢ity during th¢ eurrent orprevious year. Durin8 the year the expenses reirnbuTr to the trusttts or paid dirertly to third parties were 05 follows: 21)25 2•24 Travel 392 Numb¢rof trust¢¢5 r¢imbw5ed forexpenses duriti8 the year was l (2024: 0) 15. Related PArty Dlselosures There have be¢n no related party transactions in th¢ r¢]xJrting period that require di$¢lo$ur4 ¢x¢¢pt for those disclosed in the Tran5action5 with Trustees note. Page 16