Company resisti￿lon number. 07000073 Ch￿lty 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 Ye*r Emled 31 Allimt 2•25 The tn￿te¢S present their rel￿rt 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 chronic Th￿0de8CMe￿tIV¢ c￿ by supJ>thtio8 *)d pMbli¢isin8 th¢ virtiwl ffj¢¢tin& Foyr n¢w Fonuns ￿ve been held this y¢•r. (krniany. The test is fre¢. Since 2006 over p*tients have the dia8n05ti¢ test in duplioK which ensures the Accurjry of the Westem blo¢1¢￿ (r¢thwl fals¢ psitives). Adv*llelttz the •dtyt*tlon ofbellth prnfoMlo•th •md the ym¢r41 In All *ras rtlAtl4 to tteuroAe*nthOeyto￿& 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 sUp￿rt 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¥￿id*S 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¢a￿l￿s. This prize is both a rewaTd for excellent Wotk and intended to ¢n￿Urage 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 Commen￿1. 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 f￿llities. 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 ￿ eXch￿Se 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 $cientifi¢ T¢S¢a￿h. We ￿ept 8i¥nt ￿queSts on an ad-hoc basis pnd ¢Yaluatethem through th¢ ReseArch Advisory Committee IRACI. 4) Makittg fvture provision in its research 8rnnt ¢onditi¢)ns to ¢ontti?ue to en¢oura8¢ collaboration between re*trch¢ 81obally workin8 in th¢ lipidomics field and other relevanl areas as they emer8e. 5) Continuing to expgrtd registy development in conjuttction with newer oppoi*inities in the field and to coordinats with th¢ US Adv￿8¢Y. 6) L￿￿thing the next tall for the Glenn bviat Prize to encourage young resetrchers and 3¢i¢ntists to work in nre dise8se Page 2 T￿￿t*￿' Report (eontlnued) ForTheYar ELded 31 Autust 2025 Gokng Coll¢•rn. tottthityed 71 Setting the Sympxjsiuw in locatioDs to encour•8e inter￿tIO￿ exch￿¢ of ideas and neiworking opportunities among all particip￿lts. Young fa¢ulty 5th￿ents use the opp)rtimity to present th¢ir work dutillg the F￿ster sessiorts. The meetings a]so ifford the scientists an OPWJTtsmity to m¢¢t Fiatients fi[st4W￿ - in lau58n￿. switzerl￿ in SEPtember 2025 and in W&saw. Poland iti 2027. Patients 9]￿ family m¢Mi￿5 will ¥aiti hear the type of re5ear¢h BVEk ￿1¢￿ is owin8 the AdV￿a¢y is supprtingthrough research grants. 8) Continuing to C4)mmunik7t¢ and shpre Inftim￿l￿ iyith the US Advow to ¢K￿d the efforts of fundrntsing. communi¢atin8 with patients and providing 514>EKJrt for rese*th ptoje¢ts. 9) sea￿h1n¥ for with umbfflla aroup5 and t￿inEss¢$ 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 tnty*es tntstees will Ix subj¢d to limited terns ofoffice. There is one fvll time employ¢¢ who ￿nun¢UrCd on 3 May 2023. Reference *nd Admillistr*th Drt* Mr5 Niwla K¢at Mr5 V]r8inia tryine Miss Mary L¢igh.Wood ProfessorAthi8n Danek Mr Neil Prirx (resi￿ed 24109f2025) DrP¢ter Mills cOm￿nY 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 P*tleDts Tn￿*￿￿, Report (cO￿tinUed) FOrTh¢y￿r Ended 31 Augu9t 2025 The tru¥tees' report was approved by the boArd of trnstee5 and Siv￿d 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 Neurolu￿thOeyttys1$ 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 COmp￿Y are not reqUI￿d to be audited Part 16 of the 2006 Art And are ¢ligibl¢ for Indep￿dent 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. Independe￿1 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 P￿tice 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 sI￿Uld 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 P*tients ststement ofFth*nelal Aetfvhles (Intludlts8 Income and ExpendlthrnAecount} ForThe Year E￿ded 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 Exp￿dIt￿TeA¢¢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 fi￿d5 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 fiti￿1￿ 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