REGISTERED COIKPANY NUMBER: 07000073 (England and Wales) REGISTERED CHAIUTY NUMBER: 1133182 orl of the Trustees and Unaudited Financial Stydtements for the Year Ended 31 Au ust 2024 for Advocac For Neuroacanlhoc tosis Palicnls Advocac For Neuroacanthoc tosis Patients Contents of the Financial Statements for the Year Ended 31 Au ust 2024 Page Report of the Trustees Independent Exydminer's Report Statemenl of Financial Aetivities Balance Sheet Notes to Ihe Financial Statements 9 to 15 Detailed Statement of Financial Aetivities 16 to 17 Advoca For Neuroacanthoe tosi P tients ort of the Trustees for the Year End 31Au ust 2024 The trustccs who are also directors of the charity for the purposes of the Cornpanies Act 2006. prescnt their report with the financial stateni¢nls of the Lharity for the year ended 31 August 2024. The truslees have adopted the provisions of Accounting and Reporting by Charities." Statement of Recommcnded Practice applicable to charAties preparing their accounts in accordance with th¢ Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effectiv¢ l January 2019). OBJECTIVES AND ACTIVITIES Public benefit Th¢ Advocacy for Neuroacanthocytosis Patients benefits a group of patients around the world who suffer from two v¢ry rare (hronic neurodegenerativ¢ conditions: VPS13A disease (Chorea Acanthocytosis) and XK disease (McLeod Syndrome) that often begin in early adulthood and leave patients wholly dependent on carers. There are only 12 known patients in the United Kingdom and 45-50 cases in the United State5, and we do have new diagnosedlpotential patients or their families or carers from all over the world who contact us as a result of searching for infomiation about VPS13A and XK diseases. The world-wide figure is only speculative. but it is likely to be fewer than 3.000. The Advocacy works with patient groups for Huntington's disease and neurodegeneration with brain iron accumulation that includes Pl(AN, a relaled disease that affects children. We are the only charity in the UK supporting those with the adult neuroacanthocytosis discascs. The specific public benefjt objectives of the Advocacy are: l ) To promote and protect the physical and mental health of sufferers of neuroacanlhocytosis diseases and their families tI￿ough the provision of support, education and practical advice. 2) To advance the education of health professionals and the general public in all areas relating to neuroacanthocytosis. Page I Advocae For Neuroacanthoe tosis Patients ort of the Trustees for the Year Ended 31 Au ust 2024 ACHIEVEMENT AND PERFORMANCE Charitable activities Promoting and protecting the physical and mental health of sufferers of neuroAeantho¢ytosis diseases and their families through the provision of suppor( education and practical advice. l ) In November 2023, February and July 2024 we published our e-newsletter that supports the growth of a community by sharing patient experienceq and inforn]ation that may be of practicaE help with the debilitating symptoms that affect patients that begin in early adulthood and leave patients wholly dependent on carers. Volunteers help translate it into other languages. Our direct contact with the families of newly diagnosed patients has encoura8ed people who otherwisc feel complctely isolated by this very rar¢ discase. 2) Patients have added their stories to thc multi-lingual website sharing experienccs of things that have both helped patients, well-being and suggested ways for patients to support research to find a therapy. Through email, phone and personal meetings. w¢ have frequent conlact with the families of patients and we bring their voices and experiences to the medical community. In recognition of these achievements the Public Service Award from the International Parkinson and Movement Disorder Society was granted to the Advocacy Chair Ginger Irvine. 3) Thc Advocacy supports thc ncw VPS13 FORUMS held on linc. Arising from thc 10th Symposium in March of 2021 the international community of clinicians, scientists and families dealing with VPS13A disease and XK disease, respectively, th¢ Advocacy continues the conversations by supporting and publicisiiig the virtual In¢eting. Four new Foruins have been held this year. 4) The Advocacy supports a free diagnostic scrvice offercd by Dr. Kevin Peikert at the Universiiatsmcdizin Rostock in Gem)any. The test is free. Since 2006 over 700 patients have had the diagnostic test in duplicate. Advancing the education of health professionals and the general public in all areas relating to IYeuroacanthocytOgiS l ) The I I th global NA Symposium was held in Homburg, Gemiany in September 2023. Scientific and patient sessions were held over three days. 2) The Advocacy continues to support the creation ot an international patient REGISTRY in which consistent histories of anonymous, diagnosed patients can be studied and eventually bc a source of candidates for drug trials. The NA REGISTRY will continue lo be hosted under the European Huntington Disease registry (EHDN). A separate registry of VPS13A mutations is hosted within the open-access Leiden Open Variation Database (LOVD). 3) The second Cilenn Irvine Prize was presented at the Symposium. A calendar of the process to find the winner is continually being coordinated by the Advocacy. consultants and researchers. This prize is both a reward for ex¢¢ll¢nt work and intended to encourage further work in the study of neuroacanthocytosis. Page 2 Advocae For Neuroacanthoc tosis Patients ort of the Trustees for the Year Ended 31 Au ust 2024 FINANCIAL REVIEW The charity ¢nded the year with rcscrvcs at 311812024 of £19,800, and £31.52. Thc charity designates funds spccifically for any grants where research has already commenced. The Advocacy's policy is to commit its full resourc¢s to its educational and research work each year. The charity has very limited expenses as the work is done by one full time paid staff and volunteers using home office facilities. FUTURE PLANS The charity plans to continue to focus on:_ l ) communicating with patients and their families through personal contact by email, Facebook, phone. visits and through the renewed website to increase the communication between patients, families. We will continue to bring news of developing therapies such as deep brain stimulation and to present the opportunity for paticnts to help with blood and tissue donations for expanding research. Patients, families can exchange messages of experiences and concern. Our Jeans for Genes grant provided funds to improve the w¢bsit¢ and our presence on social mcdia. 2) providing support for communication and tissue acquisltion to the related research at Munich, Dresden, Rostock, Verona, Oxford, Nijmegen, Stony Brook, Mount Sinai and Michigan universities. 3) promoting new scientific research. clo￿ collaboration has been developed by laboratories into probing the findings of investigators in Dresden and Verona. The project was renewed for a third year. 4) making future provision in its research grant conditions to continue to encourage collaboration between res¢ar¢h¢rs globally working in the lipodomics field. 5) continuing to expand registry development in conjunction with newer opportunities in the field and to coordinate with the US Advocacy. 6) launching the next call for the Glenn Irvine Prize to encourage young researchers and scientists to work in rare disease environments. 7) setting the Symposiums in locations to encourage interactions. exchange of ideas and networking opportunities among all participanls. Young faculty and students use the opportunity to present their work during the poster sessions. The meetings also afford the scientists an opportunity to meet patients first-hand which they will also do in Lausanne in September 2025. Patients and family members will again hear the type of research work which is on-going and the Advocacy is supporting through research grants. 8) continuing to communicate and share infonnation with the US Advocacy to expand th¢ efforts of fundraising, cominunicating with patients and providing support for research projects. 9) searching for partnerships with umbrella groups and busincsses willing to support the charity by continuing our relationship with Aspire Biosciences. Beacon and Eurordis. Page 3 Advocac For Neuroacantho tosis Patients Re ort of the Trustees for the Year Ended 31 Au ust 2024 STRUCTURE, GOVERNANCE AND MANAGEMENT Governing document The charity is controllcd by its governing document, Articles and Memorandum of Association, and constitutes a limited company, limited by guarantee as dcfined by the Companies Act 2006. Recruitment and appointment of new trustees New tNstees are elected solely by the present trustees and all trustees will be subject to limited temis of office. The trustees meet quarterly in a fornial meeting with an agcnda set out in advance. Trustees and officers are volunteers. There is one full time cmployee who commenced on 3 May 2023. REFERENCE AND ADMINISTRATIVE DETAILS Registered CompAny number 07000073 (England and Wal¢s) Registered Charity number 1133182 Registered office 39 Coleheme Court Th¢ Little Boltons London SW5 ODN Trustees Mrs V Irvine NAPrice Ms M E Leigh-Wood- Consultant Dr P G Mill8- Retired Mrs N Kcat - Scicntific Opcration8 Managcr at thc CRUK & UCL Canccr Trials Ccntrc (CTC) Professor A Danek- Retired (appointed 13.12.23) Company Secretsry Mrs V Irvin¢ Independent Examlner Orcadia Chartered Accountants 1- 3 East Road Kirkwall Oikney KW15 IHZ Approved by order of the board of trustees on..... .. ... signed on its behalf by: Mrs V Irvine - Trustee Pag¢ 4 ORCADIA CHARTERED ACCOUNTANTS Inde endent Examiner's Re ort to Ihe Trustees of Advocac For Neuroacanthoc tosis Patients Independent eAAmlner's report to the trustees of AdvoeACy For Neuroaeanthoeytosls Patlents ('Ihe Company,) report to the charity trustees on my examination of the accounts of the Company for the year ended 31 August 2024. Responsibilities and basis of report As the charity's trustees of the Company (and also ils directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of tlie Coinpanies Acl 2006 {'the 2006 Act,). Having satisfied myself that the accounts of the Company are nol reqiiired to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examinalion of your charity's accounls as carried out under Section 145 of th¢ Charities Act 2011 ('tlie 201 l Act,). In carrying out my examination I have followed the Directions given by the Charity Commission under Section 145(5) (b) of the 201 l Act. Independent examiner's stalement I have completed my examination. I confim] that no matters have come to my attention in connection with the examination giving me cause to believe: accounting records were not kept in respect of the Company as required by S¢ction 386 of the 2006 Act. or the accounts do not accord with those records. or the accounts do not comply with the accounting requirements of Section 396 of the 2006 Act other than aiiy requiremenl that the accounts give a true and fair view which is not a matter considered as part of an independent examination; or the accounts have not been prepared in accordance with the methods and principles of the Stalement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)). I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. ris Hutchison rcadia Chartered Accountants Date: . Page 5 CAS:: Directors.. Doris Hutchison CA. A Stéven J Sinclalr 8A. CA Kazia J Watson CA. A Registered in Scotland number SC272848 Registered Office: 1-3 East Road, Kl￿wall, Orkney, KW15 1HZ Tel= 01856 872804 Email: accountants orcadia-ca.co.uk Website: www.orcadia-ca.co.uk Rwstetpd to carry outaudit work in the UK by The Institute ofCharteredAccountants of Scotland Advocae For Neuroacanthoc losis Patients Statement of Financial Aclivities for the Year Ended 31 A ust 2024 2024 Total funds 2023 Total fiinds Unrestricted t.unds Restricted funds Notes INCOME AND ENDOWMENTS FROM Donatioiis ai)d legacies 45,207 45,207 6,922 liivestinent iiicome 842 4,19S 5,037 1,925 Total 46,049 4.195 50.244 EXPENDITURE ON Raising fiinds 647 Charitable activities Research Grants and Symposium payments 9.000 9,000 8,989 Otlier 37,336 5,672 43,008 24,300 Total 46J36 5,672 52,008 33,936 Net gai1is1{losses) oli iiii'estments 7,844 7,844 112 NET INCOME/(EXPENDITURE) (287) 6J67 6,080 (24,977) RECONCILIATION OF FUNDS Total fiiiids broLight forward 81,863 115.483 197J46 222,323 TOTAL FUNDS CARRIED FORWARD 81,576 121,850 203,426 197,346 The nc)tes forni parl ol" these fiiiancial stateiiieiils Page 6 Advocac For Neuroacanthoc tosis Patienls Balance Sheet 31Au ust 2024 2024 Total funds 2023 Total funds Unrestricted fuiids Restricted funds Notes CURRENT ASSETS Debtors Investments Cash at bank 227 70,842 13,456 227 186,321 19.827 115.479 6J71 160,977 38,557 84,525 121,850 206J7S 199,534 CREDITORS Amounls falling due within one year (2,949) (2,949) (2,188) NET CURRENT ASSETS 81576 121850 203,426 197,346 TOTAL ASSETS LESS CURRENT LIABILITIES 81,576 121,850 203,426 197,346 IYET ASSETS 81,576 121,850 203,426 197,346 FUNDS Unrestricted funds Restricted funds 81,576 121,850 81,863 115483 TOTAL FUNDS 203,426 197,346 The cliaritable Lompany is entitled to exemption from audit under Section 477 of the Companies A¢1 2006 for the year ended 31 AugLlSt 2024. The niembers Iiave not required the cornpaiiy to obtain an audit of its financial statements for the year ended 31 August 2024 in accordance with Section 476 of the Companies Aci 2006. The trustees acknowledge their responsibilities for (a) eiisuring that the charitable company keeps accoui)ting records ihal comply with Sections 386 and 387 of the Companies Act 2006 and preparing financial statements which give a true and fair view of ihe state of affairs of th¢ charitable company as at the end of each financial year and of its siirplus or deficit for each finaiicial year in accordance with the requirements of Sections 394 and 395 and which othernvise comply iviih tlie reqliirements of the Companies Act 2006 relating lo financial statemenls, so far as applicable to the charitable company. (b) The notes fomi part of these financial statements Page 7 Advocac For Neuroacanthoci'tosis Patients Balance Sheet - continued 31Au ust 2024 'rhese fiiiaiicial stateinenls ha￿L been prcpared iii a¢cordaiiLe ￿l'it&1 tlie provisioiis appliclihle to charitable Loinpanies siibjecl to the sinall companies reginie. Tlie financial statemeijts ivere approved by tl)e Board of 'l-i-Iistees and autliorised for issiie 011 22 May 2075 aiid ¥vere stgned on its belialt" by.. V Irvine Trustee The notes form part of these fiiiancial statements Page 8 Advocac For Neuroacanthoc tosis Patients Notes to Ihe Financial Statements for the Year Ended 31 Au ust 2024 ACCOUNTING POLICIES Basis of preparing the financial statements The financial statements of the charitable coinpany, which is a public beiiefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Ac¢ountiiig and Reporting by Charities: Statemenl of Reconimended Practice applicable to charilies PTepariiig their accounts in accordance witli the Financial Reporting Staiidard applicable in the UK and Republic of Ireland (FRS 102) (effective l January 2019),, Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland, and the Companies Act 2006. The financial statements have been prepared under the historical cost convention. Income All incoine is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the iiicome will be received and the amount can be measured reliably. Expenditure Liabilities are recognised as expenditure as soon as there is a legal or conslriictive obligation ommitting the charity to that expenditure, it is probable that a transfer of ecoiiomic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounled for on ali accruals basis and has been classified uiider headings that aggregate all cost related to the category. Wliere costs cannot be directly attributed to particular headings they have been allocated to aclivities on a basis consistent with tlie use of resources. The company makes quarterly payments against the expenses invoices of grant recipieiits. £8.489 was paid to grant and symposium recipients diiring the year by tl)e Advocacy of Neuroacanthocytosis Palients. Taxation The cliarity is exempt from Corporation tax oli its charitable activities. Fund accounling Designated Funds are held in anticipation of requests for financial siipport of active research projects approved by the Board. The conditions of any grant allowed for an unconditioi)al termination, however, the board feels a moral obligation after such grants have begiin. At 31 ALigust 2024, there were no active research grants provided for as Desigiiated Fiinds. Foreign curreneies Assets and liabilities iii foreigii currencies are translated into sterling al the rates of exchai)ge ruling at the balance sheet date. Traiisactions in foreign currencies are translated into sterling ai the rate of exchange ruliiig al tlie dale of transaction. Exchange differences are takeii into account in arriviiig at the operating result. Page 9 Adi,oeac For Neuroacanthoc tosis Patients Notes to the Financial Statements continued fvr thL, Year Ended 31 Au U5t 2024 INVESTMENT IINCOME 2024 ?0?3 Iiiterest receiwed Divideiid incotne 2,766 2271 21 1,904 5,OJ7 1,925 RAISING FUNDS Investmenl managenient cost 2024 2023 Siipport cosls 672 647 TRUSTEES, REMUNERATION AND BENEFITS There were no trustees, remuneration or other beiiefits for ilie year elided 31 Augiisi 2024 1101. foi. Ihe year ended 31 August 2023. Trus¢ees' expenses There ivere no triistees, expenses paid for tlie year ended 31 Aiigiist 2024 1)or for the year elided 31 Au&>iisi 2023. STAFF COSTS The a￿e1'age inonthly niiniber ot. einployees diiriiig the year was as tollo¥i s: 2024 2023 Part lime administration No einployees received emolLimeiits iii excess of £60,000. Page 10 Advocac For Neuroacanthoc tosis Patients Notes to the Financial Statements - continued for the Year Ended 31 Au ust 2024 COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES Unrestricted funds Reslricted fiinds Total fiinds INCOME AND ENDOWMENTS FROM Donations and legacies 3,422 3,500 6,922 Investment income 1,925 Total 3,422 5,425 EXPENDITURE ON Raising fiinds 647 647 Charitable Aetivities Research Grants and Symposium payments 8,989 8.989 Otlier 24,300 Total 33,289 647 33,936 Net 8aiiis on investments 112 NET INCOME/(EXPENDITURE) (29,867) 4,890 (24,977) RECONCILIATION OF FUNDS Total fiiilds broiight forward 111,730 110,593 222,323 TOTAL FUNDS CARRIED FORWARD 81,863 115,483 197346 Page 11 .4dvoL'ac Fur Ncuroacanthoc tosis Patients Notes to the Financixl Statements - continued for the Year Ended 31 Au ust 2024 CURRENT ASSET IIYVESTIIIENTS 2024 2023 Ratlibi)nes 186,321 160,977 CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2024 2023 Otlier creditors 2,949 2,949 2,188 MOVEMENT IN FUNDS Net niovenient in fuiids At 31.8.24 At 1.9.23 Unrestricted funds Undesigliated F iiiids 81,863 (287) 81,576 Restricted funds Harvard Doiiation Glenn I rvine Prize fiiiid Jeans for Geii¢s 650 111,333 3,500 650 117.700 3,500 6J67 115483 6J67 121,850 TOTAL FUNDS 197,346 6,080 203,426 Page l? Advocac For Neuroacanthoc tosis Patients Notes to the Financial Statements - continued for the Year Ended 31 Au ust 2024 MOVEMENT IN FUNDS- continued Net moveinenl in funds, included in the above are as folloivs.. Incoming resoiirces Resources expended Gains and Movement losses in fiiiids Unrestricted funds Undesignated Funds 46,049 (46J36) (287) Restricted funds Glenn Irvine Prize Fund 4,195 (5.672) 7,844 6,367 TOTAL FUNDS 52,008) 7.844 6,080 Comparatives for movement in funds Net movenient in fuiids At 31.8.23 At 1.9.22 Unrestricted funds Undesi8nated Fiii)ds 111,730 {29,867) 81,863 Restricted funds Harvard Donation Gleiiii Irvine Prize Fund Jeans for Gen¢s 650 109,943 650 11,333 3,500 1,390 3,500 10,593 4,890 115,483 TOTAL FUNDS 222,323 24,977) 197346 Page 13 Advocai , For Neuroacanthoc 'tOliiS Palients Noles to the Financial Statements- continued for Ihe Year Ended 31 Au ust 2024 MOVEMENT IN FIINDS- continued Coinparative net iiiovemLnl in fuiids. iiiLILided in the above are as follows- Iiicom iii r¢sourLes Resoiirces expended Ciaiiis aiid Moveineiit losses iii funds Unrestricted fund8 Uiidesignated Fiiiids 3,422 (33,289) {29.867) Re51ricted funds Gleiin Irvilie Pi'ize Flind Jeans for Geiies 1.925 3,500 (647) 112 1 ,390 3,500 5,425 647) TOTAL FUNDS 33,936) 112 24.977) A Liirrent }'ear 12 Inontlis and prior year 12 niontlis combiiied position is as folloivs: Net moveineiit in fiinds At -31.8.24 At 1.9.22 Unrestricted funds Undesignated Fuiids 111,730 (30,154) 81.i76 Restricted funds Harvard Donatiuii Gleiin I rviiie Prize F lind Jeans for Genes 650 109,943 650 117,700 3,500 7,757 3,500 110593 11,257 121,8iO TOTAL FUNDS 222,323 18,897) 203,426 Pai>e 14 Advocac For Neuroacanthoc tosis Patients Notes to the Financial Statements - continued for Ihe Year Ended 31 Au ust 2024 MOVEMENT IN FUNDS - continued A current year l ? months and prior year 12 month5 combined net niovemeiit in fuiids, included in the above are as follows: Incoming resources Resources expeiided Gaiiis aiid Movenienl losses in funds Unrestricted funds Undesigiialed Funds 49,471 (79,625) (30,154) Restricted funds Glenn Irvine Prize Fund Jeans for Genes 6,120 (6,319) 7,956 7,757 9,620 1,257 TOTAL FUNDS 85 944) 18,897) 10. RELATED PARTY DISCLOSURES There were no related party transactions for the year elided 31 August 2024. Page 15 Adi'ocac . For Neui'oaeaiillioc tosis Patients Detailed Statement of Financial Activitie for the Year Ended 31 Au Ust 2024 ?{)?4 INCOME AND ENDOWMF.NTS Donations and legacies Donations Grants 45,207 3,500 45.207 6,9?2 Investment income Ii)terest received Div idend iiicoine 2,766 21 1,904 5,037 1.925 Total incoming resources 50.244 8,847 EXPENDITURE ChY4ritable activities Research Grants & Syiiiposiuiii 9.000 8,989 Oiher Gleiin Iri ine Pri7.e 5,000 Support Costs Finance Rathboi)es fees Baiik. Lliarges E.xcliaiige rate gainllosses 672 199 647 205 622 761 1,474 Information technology i-r Exp¢nses 307 369 Carried t"orward 10.832 -riiii PQC CFC doL'S Ilot foriii Piirl of ilie statLltory fin