Trustees. Annual Report for the period ,' P8rk)d starl dalg Perfod end dale From 01 10 Section A Reference and administration details Charity name Cavernoma Alllance UK other namés charity is known by CAUK Rgglstered charity number Ilf any) England and Wales 1197257 Charlty's prln¢lpal address Po Box 366 Walllngton Oxfordshira Po$tcod OX10 1GF Trustees who manage the charlty Cavernoma Alliance UK ICAUKI is a charity run by and for the cavernoma community, and every member of our Board of Trustees has lived experionce of cavernoma. Trustees are elected by our members at the Annual G8neral Meeting. Each y&ar, around one third of trustees slep down lo allow regular renewal. and membors vole lo reappoint Irusltres or fill any vacancles. Tr$189 nHm• ONlce Ifan D3te$ l¥trd Heather Dunbar ICav&momal Chair caverr)oma.or .uk Elizabeth Blackshaw Isupporter) Treasurer cavernoma.or Mark Farrar IParenl} Chair Treasurer (Current) Appointed 2161 June 25 Treasurer (Former) ReAppoinled 2191 June 25 Resi ned 3151 December 25 Re•Appoinled 2181 June 25 Roxanna Dixon Icavernomal Barbara Edmonds IRelallvel Jade Davies Icavernomal Emily Flgtcher Icavernomal Alex Ford (P8renl} Ailsa Chanrai IRelatlV81 Lgad for Human Resources Lead for Supporl Lead for Communlcations Lead for Fundraising Lead for Research Lead for Inclusion Appointed 21 sl June 25 Advlsors who provld8 experl sclentlflc and cllnlcal guldan¢8 Our work Is guided by a Board of Scienllflc and Clinical Advlsors, made up of the UK'S leadlng cavornoma experts alongside international speoialisls. They ensure Dur Infomiallon Is accurat8 and up to dale, advise on advances in liealmenl and researoh, and help drlvo ImprDvem8nls In care for people affected by cavernoma across the UK.
Advlsor name Role if a Chair and Neurolo Neurosur Ical Lead Patron and Neurosur e Pre-cllnicallsclence Neurovascular NLJrsln Neurosur Adult Neurolo Adult Neurosur Paedialrlc Pre-CllnicallScienc8 Neuro cholo Adult Neuro cholo Child Neurolo Child Neurosur Adult Neuroradlolo Neurolo Adult Dates $81V8d ear Professor Ruslam Al-shahl Salman Professor Dlederlk Bullers Mr Nell Kllchen Dr E1118 ChSlcoll Lesle Foulkes Mr Palrlck Grover Dr Kirsl Harkness Mr Gre James Peelra Ma nusson Dr Anita Rose Dr Stewart Rust Dr Grace Vossallo Mr Dan1el Walsh Professor Phil Whlt8 Dr Susanna Zuurbler ical Lead We are also supported by CAUK Member Advisors. These are members of our community who bring relevant pre-clinkal or cllnlcal knowledge, helplng lo ensure the pallenl volce Is clearly heard w51hln the Advlsory Board. CAUK Mombor name Jana Ber hollz Connie Lee Yasemin Cole Charlotle Cuffe Iman Muzafar Down Smith Role Euro tr8n Cavernoma Alliance Allianco to Cure Pre-Clini¢allScience Pre-clinicallscience Medlcal Student Publlc and Pallenl Involvement Datès 8eiv8d èar Our day-to.day work is delivered by a small staff team, supported by dedlealed volunteer8, who manage CAUK'S services, projects and operallons and work closely with Iruslees and advlsors to support the cavernoma community. Staff. contractors and volunteers who dellver our work CAUK Momber name Role and week hours Helen Evans R8lalDfe Charil Mana er 37.5 hours Traco Hammond Cavernoma Volunteer Mana er 17.6 hours Nicola Slgers CaveTnoma Member Su ort Assistant 7 hours Balool Raza Events Assistant Datgs sor¥ed ea Joined 1 Bl December 24 Jolned 151 December 24 Left 315l Au usl 25 RobnHu hes Jade Davies Michael Nelson Thera variable hours Social Media CDnsullanl 4 hours IT Consultant variable hours We are also 5UPPOrted by an Sncredible team of 62 volunteers, all with lived experlence of cavernoma. Volunteers play a vital role across the charity, including peer support through the helpllne, buddylng, community meel-ups and online support groups, as w&ll as soclal media, admlnlstrallon, fundraising and IT, with governance provldèd by volunteer trustees. Thelr commitment, inslghl and generoslty of Ilme enable CAUK to reach more peopl8 and do far more than would otherwi86 be possible.
Section B Structure, governance and management Description of the charlty's trusts Conslitullon Type of governlng document How Ihg charity is constiluled Charitable Incorporated Inslilullon ICIOI Trustee sel8clion methods Elected I re-elected al Annual General Meetlng Between AGMS. can bè elected by the Boar Addltlonal governance Issues {Optlonal Infomiatlon} The trustees mael al least evgry other month, and mora often if required. Trustees hold designated roles lo support clear accountability and well- defined responsibilities. Key rSsks are Idenlifled and managed through approprlale systems and pollcies. Trustees receiv8 Induction and ongoing training as needed, and as a member of th8 National Council for Voluntary Organlsallons {NCVO), the Charlly also has access to exlernaS governance advlce and support. You may Choose lo include additional Infomalion, where relevant, about.. policies and procedures adopted for the Induction and Iralnlng of Iruslees; the charity's organisalional slrucluro and any wider network with which the charity works.. relationshlp wh any related parties,. Iruslees. consid8ralion of major risks and the system and procedures to manage them. Section C Ob'ectives and activities Summary of the oblects of the charity set out In Its governlng document 1. To promote and proloct the physical and mental health of those wlh cavernoma Ihrough the provision ol support, education. research and pracllcal advice. 2. To advance the eduGation of the general publlc In all areas relatlng lo cavernoma. Summary of the maln actlvltlos undèrtaken ft>r the publlc b&neflt In relation to these oblocts Ilnclude wlthln thi5 sectlon the statutory declaratlon that trustogs have had rggard to the guldanee Issued by tho Charlty Cavernoma Cavernomas arg abnomial clusters of blood vesséls with thin. leaky wa118, resgmbllng raspberries. They can develop in the braln and splnal cord 8nd may bleed al any age wilhoul warning. Cavernomas affect around 1 in 625 people in the general population, equallng lo around 108,000 people Sn the UK. Most people with a cavernoma remain asymplomatlc. Symptomallc ¢av8rngma is rare, affecting an estimated 1 in 2,700 pèople. Symptoms can include haemorrhages, seSzures, and other neuiologScal issu88. Trealmtsnl options include monitoring I'wait and see'}, neurosurgary, or stereolactlc radiDsurgery. In most cases, the cause of Cavernoma Is unknown. However, around 1 in 5 casgs have a gengts'c origln, with a 500/0 chance of passing Ihg gen8 to a child. If an indlvldual has only a single braln cavernoma, a genellc cause is unlikely.
Commlsslon on publlc benèfltl Cavernoma Alllance UK Dr lan Stuart founded Cavernoma Alllance UK ICAUK) after 8 Ilfe-changlng cavernoma bleed. Struggling with a lack of InfoTrnalion and support, he was d8lèrmined that no one should face cavernoma alone. In 2005, hls vlslon became a reality when he started GAUK. What began as a volunleer-led helpline from lan's home in Dorchoslor grow into a national charity. Today. we support over 4,200 members with a small, r8molo team of part.tlmo staff and self-employed contractors. Volunteers remaln al our core, wllh 62 volunteers Tunning the helpline, buddying, meet ups. onllne chats and medlcal alert cards. We provlde cllnlc18n-approved informallon vla our w9bsile, social media, weblnars, and annual conference, overseen by our Advlsory Board. Commllled lo research, we proudly enabled novel geng therapy studies at Unlversily College London in 2024 by securing £IOO,000 in funding for UCL, and have been Ihe Palionl and Public Involvement IPPII Lead in all of the most recent Cavernoma research studles In the UK. Vlsion To hav8 a cure lor cavernoma that peopl6 Ibjlng In the UK can access Aims To provlde peer-led support lo people %Mlh cav8rnoma and Ihelr supporters Ilvlng In th8 UK To improve consistency in the current diagnosis and treatment of UK patien18 To promote research to cure cavernoma and advocate foi UK access to now Irealmants Values Collaborallon- Aohigving more by worklng togelhgr Informallon Provlding relSable and accurate Infomialion Incluslon Embraclno and valulng evgry volce Empowerment- Supporting informèd health declsk)ns Trustworthlness- Acting wllh Inlegrlty and rellablllty Objectives Support- Every person Ilvlng wllh cavernoma In the UK wlll be aware of CAUK'S peer-1 support, and have Iholr request for 8UPPOrt mgt as we grow exlsllng 5ervlces. Information & Cllnlcal Care- People Ilvlng wllh oavernoma and the professlonals supporting them will have access lo relieble, accurate and up lo dale informallon aboLtI cavemoma and will use Ihls lo improve care and supporl. Research- Both children and adults with cavernoma 11 have access through the NHS to new and better treatment options, which have provgn lo be safe and effectlve. Under-pinning Operations- CAUK will be a reslllenl organisallon th81 Is r88pon8ive to a changing world. Summary The year 2024-25 was a slgn51icanl one for Cavemoma Alllance UK, marklng 20 years slncfr our founder. Dr lan Stuart, e8tabllshed th& charlty In 200S to ensurg Ihat no one faces cavernoma alone. What began as a volunl&8r-led helpling from his home in Dorchesl&r has grown Into a natlon31 charlly supporting more than 4,200 members wlth peer-led support, trusted information and advocacy for better Irealm6nls. During thls annlversary y8ar we reflected on the progress made over the past two decades whll& also looking ahead through the launch of our new flva.year strategy 12025-20301. The strategy sets OLJI a clear pathway towards our long-term vision.. a cure for Cavernoma that 00 le Ilvln In the UK can access, su orted b four slrale
priorities focused on support, Informatlon and cllnlcal care, research and reslllent operatlons. Encouraglng progyess was made across these priorities during the yoar. Demand for supporl from the cavemoma communlly conllnued lo grow, wSlh 316 people supported through 484 helpline calls and ernails, rgpres8nling a 140h increase in ptopl& supported and a 19010 Increase In conta¢t$ compared with the prevlous year. Our counselling service supported 26 people, whIe 23 people were matched through our buddying programme. Communlty connection also expanded through 13 Irpperson meet- ups attended by 128 people, 10 Inleracllve weblnars th 365 Ilve allendees, and 21 online support group $8sslons, alongslde a very aollve onllne peer-support communlly. Our community also conllnued to grow, wllh 266 new mgmbers lolnlng durlng the year, bringlng lolal membership lo 4,217 pèoplè. Awareness of cavgrnoma and of CAUK'S work also contlnued lo Increase through our digital channels, whlch now connect with 8,167 followers a¢ro$$ $o¢lal media, with awarèness campaigns during the year reaching over 142,000 vlews on Facebook and Inst8gram. Improving access to r&liable information remained an Important focus of our work. During the year we created or subslanlially updated 12 information resources, produced two new fllms, and continued lo strengthen our website as a trusted source of dlnScSan- reviewed Informatlon. Awareness campaigns Including Rare Disease Day, Braln Awareness Week and Cavernoma Awafeness Monlh helped ensure the voices and exp8riencgs of people living with cavernoma Gonlinued lo be heard. Progress In research was another important hlghllght of the year. CAUK conllnued its collaboration wllh researchers at the Unlverslty of Edlnburgh as a co-appll¢ant on the proposed CARE Asplrln trial, with a second-slage fundlng applicallon 3ubmllled to the National Inslitulo for Health and Care Research INIHR}. If succossfvl, Ihls study would represonl thelorgesl cllnlcal trlals ever undertaken for cavernoma In thg UK. Alongside this, work conllnued on novel gene therapy research at Unlv•r$lty Coll990 London, which CAUK helped Inltlale In the previous ytsar. During 2024-25 the research pro9ress8d with the successful èslabllshmenl of cavernom8 mousg models in a UK laboratory and the securlng ol additional funding to enable the project to Continue into 2025-26. While still at an early stage, this work represents an important slep in exploring Ire8lments that could one day address the underlying genetic causes of cavernoma. The oharlty's work durlng the year was made posslble through the dedl¢afjon of our volunteers and Iruslees, the genorosily of our community fundraisers and donors, the commitment of cliniGians and rasearchers who collaborate wlth us. and the care and professionalism of our small staff team who support thè charlly's work every day. Looking ahead lo 2025-26, the exlemal envlronment for charlt16s r8m8lns challenging. particularly for smaller organSsatlons faclng rising costs, Incroasing dem8nd for services and growlng competition for limited fundraising and grant Incomg. In this context, the Trustees remaln commilled lo a caullous and sustainable approach to growth. focuslng on consolidating recent progress while steadily delivering the prSorilies sel out In our new strategy. As wo enter our Ihlrd decade, we are proud of what our small charlly contlnues lo achleve alongslde the cavernoma communlly and remaln committed lo dolng everythlng we can lo support people livSng with G3vernoma and advance researGh l¢)ward8 better treatments.
You may ¢hoos8 to Include further 8talemenls, where relevant, about.. Please see Section D for contribullon made by volunte8r8 polScy on grant making., policy programme related investment., • conlrlbullon made by volunl8ers. Section D Achievements and performance Summary of thg main achievement$ of the charity durlng the yoar Overall AS an organlsalion run by and for people liv¢ng with cavemoma. what maller8 most lo us Is the dlfference our members tell us we are making. Each year, we invite everyone who has received support to share Ihelr vlews on how we are doing. We are proud to report that more than nine in ten people fael our support has made a substantive dlfference lo Ihelr overall quallty of Ilfe. When asked about their experience of support Ihls year, the followlng percentages of people to us they 81rongly agreed or agreed wllh the followlng statements.. I have a better underslandlng of cavernoma {96.) I feel more empowered to advocate for better care from professlonals191 Okl I feel morg resilient when faced with challenges relalod to cavernoma11 OOQA} I have new coping strategies for managing Cavemoma {950/0) I feel more Gonn8cled with others from the Cavernoma coMmunSty1100D> 11 has made a positiv8 dlfference lo my mental health and wellbèlng1910A) In additlon, we recefvod an outpouring of positlve fe8dba¢k, Here Is just a small seleellon of the comments shared wlth us: I would like lo tell you that I was anxlous when I found out that I havg a cavernoma. I was upset and had no desire to11ve. I fell that everylhlng was over for me, unlil my son sent me this website and I read about this condition. I galned strength and began lo feel alive agaln.11 Is not easy lo enduro paln and lo nolico various problems with the immune system. But together with you. we- the cavernoma communlty- wlll succeed. My Cav&rbuddy has bèen so lovely and supportive.. I really appreciate the help and support this has given m8 over a difficult Ilme (after belng dSagnosed earlier this year after a bleed} when I really knew very little about splnal cavernoma.11 has been Invaluable for me lo bè able lo share experfences. I thank you all lor su¢h a fabulous scheme. CaveTnoma UK has been a strong support to me, giving me a brlghl new hopè lo Ilfe, they also help me lo have a beller understanding of what Gavernoma Is and better ways lo manage my siluallon, thank you l am very rec&nlly diagnosed so still at the beglnning of my journey- bul I have been blown away by the support, resources and informatlon that are readlly avallable... Thank you so much for everylhlng YDU do - il has made such 8 difference already. I love cavernoma alliance UK'S, b8cause they ar8 relSablg. fast In r8sponse, con818tency. And I lol more
Section D Achievements and performance I'm newly diagnosed and would have bean lost wblhout the support I roc¢ived from Cauk. Your support has made 8 poslllve dSfference to my mental health and well-belng Among our achievements, il i¥ also important lo acknowledge argas where we can do beller. Members told us Ihey would like lo see the number of therapy sessions extended beyond the current 4 free s8sslons, to 8etr our podcast re-slarled and al80 more opportunities lo conngcl with people living In Scolland. This Is helpful feedback that we will be reflecllng on In 2025-26 as wo continue lo Identify opportunities to Improve. In the section below, we set OLtt In more detail the differenc8 we havo made this yèar across our key aclivlles of: Support Information and Cllnlcal Care Rgsearch Al a glance this y9ar we have supporled the cavernoma communlty Sn the follong way8: Helplln8- 316 people, 484 emallslcalls Counsolling . 26 people Buddylng - 23 people In-person meel-ups- 128 people Inleraclive wgbinars- 10 webinars, 365 people Onllne Support Groups - 21 meet-ups held & 2,504 on Facebook Membership- 266 new members Medlcal Al8rt Cards- 31 cards Issued Medlcal and Scientrfic Advlsory Board - 1 S experts & 8 lived experlencg members Inlormallon Resources - 12 new or updaled infomiatlon guldes, and 2 new fllms Awareness Raising- 8,167 social medla lollowors Research- Pali8nt and Publlc Involvernent lead In research proSects, CARE AspSrln al the University ol Edinburgh12nd Stagg appllcallonl, and Novel Cavemoma Gene Therapy at UCL Volunleerlng - 62 volunteers, of which 10 newly trained I. SUPPORT Helpline Livsng wllh a rare neurological condillon can bo isolating, and for many people CAUK'S holpline Is the flrst tlme they conn8cI wllh someone who understsnds. The helpline Is run by Iralned volunteers wllh livèd expellence of cavemoma and overseen by our Volunteer Manager, r8flecting the value we place on peer support. Each year around 160 peopl8 aro diagnosed with cavèrnoma, wllh th8 NHS website slgnposling exclusively to CAUK for support. Thls year, we supportgd 316 people through 484 hglpllne ¢all$ and emalls, a 14Yp Increase In peoplg SUPPOrted and • 19Yo Incroasa In ¢onta¢ts. Couns¢lllng Cavemoma can have a slgnlficanl impact on mental heallh, from the uncert81nly of Ilving wlth the rfsk of a bleed, lo seizures, neurological symptoms, recovery after trealment and, for some, Ihe omolional welghl of a familial dlagnosis. This year, we provided one-to-one onllne therapy to 26 adufts and young people, each receiving four or more sessions wllh a quallfSed Iheraplsl exporionced SUPPDrting people affected by cavernoma. For m2ny, thSs service 18 8 vital lifellne whlle wailing for NHS support, with contact lypically made within five to len working days and $08sions arranged soon after. In 2025-26, in response lo feedback from our community, we plan lo bulld on this support by extending our monthly group therapy offer lo Include themed Gourses of four sessions rovidin addlliona5 shared su rtfor eo 19 facin slmilar challen es.
Section D Achievements and performance Buddying Many people who come lo us. whether through counselllng or the helpllng. are looking for longer-term, one- Io-one support from someone who truly understands what they are going through. Living with cavernoma can feel Ssolaling, and being matched with sorneone wllh Ilved experience, and where possibl8 a similar cavernoma journey, can make a real difference. Our buddying servlce provldes Ihls ongolng support, pairing individuals wlh trained volunteer peer supporters through regular phone calls and emalls. This year, 23 buddylng matches were completed and 15 new peoplg matched. In-Person Mèet-ups This year we hosted our Autumn Lecture al the Art Workers, Guild, opposlle the Nallonal Hospital for Neurology and Neurosurgefy. Eighty people registered, with a mbx of in-p&rson and online attendance. The event was opened by Consultant Neurosurgeon Mr Neil Kitchen, followed by a lecture from Consu5tanl Neurosurgeon Mr Palrlck Grover on Cavernoma Management, Surgery, Radlosurgery snd Survelllance. This year also marked the second year of our UK-wide in-person communlly meel-ups during Braln Awareness Week110-16 March 20251. Thirteen meel-ups were held across the UK, Including Sn Scotland and Wales, wlth 98 people altendlng. Meel-ups were led by volunteer peer-supportèrs wlth Ilved experlonce of cavernoma and foGused on bringlng people together locally for mutual understanding and support. This Included a special all-day m99t-up for chbldren with c?vgrnoma al an Inclusive activity cenlre. Interactlve Weblnars This year our webinar programme continued lo grow and went from strength lo strength. In 2024-25 w8 delivered weblnars on a regular monlhty schedule, enabling us to raach more woplg across the cavernoma community. A lotsl of 766 poople reglslered. wllh 365 allendlng1Svo and many more walchlng on demand afteNards. Our webinars allernale between sessions led by the UK'S leading cavernoma specialists and 5esslons led by members of our communlly who are experts by lived 9xperience. Each Includes a presentation followèd by an Snleraclive Q&A, cr8allng space for learnlng, dlscussion and connecllon. Weblnar loplcs In 2024-25 included.. Emergency surgery and recovery Mental health and emo11onal wellbelng Slereotaclic radlo8urg8ry {SRSI Epllepsy Irealmenl and management Grief and recovery Recovorlng movgmenl after braln injury Brainslem cavernoma Slalins and cavfjrnoma-. AT-CASH EPOC Irlal inslghls Managing overlooked symptoms What we have learnt about cavernoma ov8r the last 20 years Cavernoma 1 D1.. understsndlng your diagnosls Onllne Support Groups Each month, we offer two oriline drop-ln support groups for members of the cavernoma communlty. These sessions are a Mlal part of our support offer, particularly for peopl8 who face barriers to allendlng In-person events, such as reduced mobility or n&uro-fallgue. Membgfs can choos6 between Iwo formats, each runnlng onc8 a month. Our Community Chal provides a relaxed informal s ce to connect and share ex erfonoes. This ear we extended fadlllaliDn of Communl
Section D Achievements and performance Chal lo experienced volunteer peer-supporlers, with oversight from our Volunl&er Manager. Our Therapeullc Group is lacililaled by our Counsellor, who has specialist knowledge of Gavernoma and leads small groL¢P therapy sassions around a different theme each month. Over th& year, we held 21 group meet.up$ In total. These sesslon8 are open to anyon6 affècted by cavernoma, In¢ludlng people with a diagnosis, parents, carers 8nd others who support them. Alongside our monthly onllne support groups, we also host a very active closed Facebook group, moderated by CAUK. The group now has 2,504 members, with mulllpl8 new posts each day, providing ongoing pear support and connection for our communlty. Membershlp Everyone affected by cavernoma, whether they Ilve wlth the condlllon themselves or support someone who does. can register for free as a member of Cavernoma Alliance UK through our website www.cavernoma.org.uk. Becoming a member connects people with a community that understands what they are golng through, which can be Ilfe-changing when Ilving with a rare conditlon that most people have n8ver heard of. Membership also glves access lo our core support servlces, Includlng buddylng, counselllng, meet-ups and medical alert cards. These $6rvlces are reserved for members so that we can maintsin a sale and supportive environm6nl where people can Connect and fe81 understood. This year, 266 peop19 registered as new members of CAUK, brlnging our total membership to 4,217 pgoplo. This represents an growth and reflects the growing need for support, infomiation and connection wilhln thè cavernoma communlty. Medlcal Alert Cards For people living with cavemoma. the risk of a seizure or haemorrhage mak8s 51 especlally Smportanl Io carry clear medical information in case of an emergen¢y. This year, CAUK provlded 31 people wlth a free Medlcal Alert Card, personalSsed wllh th85r photo, name, 8mgTgency contact details and essentlal informalKJn about their condillon. These cards can offtrr real peace of mlnd lo those affected and Ihelr famllles, enstjrlng that emergency responders havg the information they need lo act quickly and appropriately. We are Incredibly 9raleful to our d8dicated volunteer who klndly prints and po819 each card. helplng makg Ihis small bul po19nlially life-saving support possible. Volunteering Volunteeis remaln al the heart of CAUK. Almost all of our support services are dolivered by volunteers, Including the helpline, buddying, monthly communlty chats and In person meet up8 8cross the UK, Thalr lived exporignce of cavernoma enables them lo offer underslandlng, practical support and Connecti¢ lo others faclng similar challenges. At the end of thè year the charlly was supported by 62 volunteers, including 52 peer supporters d81ivering the helpline, buddylng, onllne support groups and community meet ups. Volunteers also contributed specialist skllls in areas such as IT support and medical alert Cards. grant writing, and communily fundraising and admlnislratlon. Our seven Trustees also seryo in a voluntary capaclty. provldlng govgrnance and strategic overslghl. During the year demand for support Increased slgnlflcanlly. Helpline enquiries grew subslanllally compared with the previous year, and volunteers played a cgnlral role Sn ensuring that everyone who contacted the Charity received a thoughtful and timely responso. Alongside this, our community ohals continued to grow. offering more opportunllles lor people affeoled by cavernoma to connect wllh others who understand. Supportlng and sustaining this volunteer network Is led by our Volunteer Manager. Tiacey Hammond. assisted by our Member Support AssSslanl, Nlcola Sle&rs, who joined the team in December 2024. Volunteer mana emenl includes recruitment Irainin and on oin uidance as well as on oln 1..1 su
Section D Achievements and performance lo help volunteers feel confident in their roles. We are deeply grateful lo all of our volunteers for th8 lime, compassion and lived experience they bring lo the charity. 2. INFORMATION AND CLINICAL CARE Updating and slrenglhenlng the information on our webslte was a key focus for Cavernoma Alliance UK this year. With support from our Scienllflc and Clinical Advisory Board, we created or subslanlially updated 12 web pag•s, gnsuring conlenl remains accurate, up to dale and relevant. A¢cessib18 Information on cavernoma remains limited beyond a brlef NHS overview ond academic reseaTch papers, meaning CAUK'S resources are often used as a first polnt of reference followlng dlagnosis and to support discussions with profe8slonal8. Al inlorrnalk)n is developed and reviewed with Input from leading UK ond Inlernallonal cllnlclans alongslde experts by lived exptsrience. Our webslte continues to be widely used, wllh 27,000 new users visiting durlng the year, Sncludlng a growlng Inlernallonal audienc8. Alongslde wrltten content, we PToduced two now vldeos, ono of whlGh has been nomlnaled for a Smlley Charlty Fllm Award. New and updated resouroes published th18 year Include.. Treatment options. includlng neurosurgery. sl8reolacllc radlo8urgery and medlcal management Mental wellbeing and Bmotlonal support Pregnancy, HRT and oral conlraceplion Gut health and dlel Flying and hpad injury Insurance Research developments. Includlng gene therapy GeorgirJ8'8 Story. Splnal cavernoma Michael's Story. Supporting a loved one with cavernoma When someone receives a diagnosis of cavernoma, il is common for those around them, including lamily, frlends, employers and aven healthGare profes8lonals, lo have never heard of the condition. Although rare, cavernoma affects an esllmaled 108,000 people In the UK, and low awareness can leave pe()ple feellng isola18d and misunderstood. This year marked CAUK'S 20th anniversary, which was a central focus of our awarene88-ralslng work. Throughout th? year, we shared regular conlenl across Facebook. Instagram, YouTube and Linkedln. wllh our socSal media plafforms now reachlng 8,167 followers. A key part of our anniversary year was Cavernoma Awareness Month In Jtsne, when we relaun¢hgd our I Am Cav&moma campalgn. By sharing stories and Images from people affected In the UK and inlernalionally, the campaign helped peopl8 feel less alone and reached more than 142,000 vlews on Facebook and Inslagram. Key awareness-ralslng moments durlng the year Included: 4 Rare Dls&ase Day (28 Fgbruary}, Includlng attendanc& al a Weslminsler event • Braln Awar¢ness Week110-16 March), marked by UK-wide In-person meel-ups Cavernoma Awareness Month (June), lealurlng th$ 1Am Cav8moma campalgn, the Annual Snowdon Cllmb lin-person and virtuall and Annual Conference Cavernoma Awar¥nes$ Day {14 June), Tecognised by global pallent advocacy groups CAUK was also represented al profgssional and scionlifio ev8nls. supporting Gollaboralion and sharèd learnlng wlthin the rare disease and neurosclence communitles. Th88e Included-. 10
Section D Achievements and performance Biilish Nourovasoular Group Coiilerence, Oxlord16-7 February 20251 International Conference on Vascular Anomalies, Berlin, Germany111-14 February 2025) Crick Rare Disease Conference, London13 March 20251 Neuro Conventlon, Blmlngham119 March 20251 Cambridge Rare Dlse8se Showcas8, Cambrldgo118 June 20251 Society of Brltish Neurosurgeons Conference, Bristol124-26 September 20251 RAREsummit25, Cambridge (6 November2025} CCM International Sci&nlifio and Cllnical Care Meetings, Allanla USA (6-7 November 20251 By maintaining a conslslenl public presence and sharing lived experience, we continue to raise awareness of a condi1Son that remains little known and help ensure no one feels alone in Ilving wllh cavernoma. 3. RESEARCH Drug Repurposlng.. CARE Asplrln Professor Rustam Al.Shahl Salman, Unlver$lty of Edinburgh Promoting research that leads lo effective Iroalmenls and ulllmalely a cure for cavernoma is on8 of Cavernoma Alliance UK'S three slraleglc obj8clSves. One promising pathway is drug r9purposing, testing medicines that are already wldely used for other conditions lo see whether they could beneflt people with cavernoma. Durlng Ihfj year we worked closely with research&rs at tho Universlty of Edlnburgh as a 00 applicant on a major proposal lo Ihg National Institute for Health and Care Re8ear¢h {NIHRI to fund the CARE Aspirin trial. Thbs large UK study would tesl whether dally low dose aspirin can reduce the rlsk of stroke caused by cavernoma compared with a placebo when add8d lo usual care. Thè proposed lrtal would involve 392 parti¢Spanls recrulted from around 27 hospllals across the UK. At the Ilme of preparing thls rèport and accounts we are awaiting the fundlng decision following SL¢bmission of the second stage NIHR application. If successful, Cavernoma Allianco UK wlll lead the pallenl and public involvement IPPII for the study, 8nsuring the research conllnues lo be co produced wllh people Ilvlng with caveTnoma and reflects the prlorllies of the communlty. Novel Drugs: Gene Therapy Ras•arch Professor Ralvlnder Karda, Unlvèrsity College London Alongside drug r&purpDsing. Cavernoma Alliance UK is supporting k)nger tem) research aimed at treating the underlying genelSc causes of cav8rnoma. During 2024 10 2025 Wofk conllnued on a proof of concept gene therapy project funded by Cavernoma Alliance UK, with support from a CAUK member philanlhroplsl and an Initial conlrlbullon from Cavernoma Ireland. The research is being carrled out in partnershSp wSlh researchgrs al University college London and collaborators at Uppsala University In Sweden. As part of thè prolecl, cavernoma mouse models developed by our partners in Uppsala have been successfulty red8rived in a UK laboratory. enabling the first experimental sludles lo begln here In the UK. The resear¢h remains at an early stsge, bul11 represents an Important step in explorlng whether gene therapy could one day Ireal the genetic causes of familial cavernoma. At the lime ol writing this report the WOTk Ss progressing. and Cavernoma Alliance UK, with tha continued support of a CAUK member philanlhroplst, has Secured further fundlng to continue th& proleol during 202510 2026. Gen8tic Testlng: TLNRD1 Professor Ben Goult, Unlverslty of Llverpool During 2024 10 2025 Cavernoma Alliance UK also began working with Professor Ben Goull al the University of Liverpool, whose research is exploring why Some pgople appear lo inherit cavernoma even though genetic lesllng does not identify changes in the known CCM genes. Worklng wllh Cllnlclans al The Walton Centr8, the research team has idenllfied a candidat8 protein Called TLNRD1 that may help explain how some cavemomas form. Over the past yeai we have established a relallonshlp with the research group anij have begun conlribuling the patient peFspeclive lo help infom th8 direction of the work. Thls ensures that the research reflects Ihg experlencos and priorllles of people Ilving with Gavernoma. Other Research ActlvltSes Other activities during th8 year focused on encouraging wldgr research and Industry Inler8sI Sn cavernoma. Cavernoma Alliance UK allended and presented al an Asplre Blosclencas event, providlng an OPPDrtunity lo introduce cavernoma lo PharMaul1¢al companles and hlghlighl areas where further research and Irealmenl development are needed. As a result of Ihese discussSons, we are now in ongolng follow up conversations with two harmaceullcal oom anles who have ex ressed Interest in th8 conditlon. Durtn the ear we also
Section D Achievements and performance began exploring the potential of low frequency focused ultrasound following promisin9 pre-clinical studies. As parl of thi8 work w6 have begun discussions with Insighlec and NaviFUS lo identify a suitable low frequency focused ultrasound machlne that could support a future clinical trial. should regulatory approval be granted for a study in the Unlted Sla188 and early results provo encouraglng. Section E Financial review Brlef statement of the charlty's pollcy on reseNes Reserves The Iruslees review the charity's reserves policy annually, taking account of IhB chorily's income profile and the wlder fundlng environment. As In prevlous years, despite dlverslflcallon efforts and Invgstmenl In grant wrillng, the majority of Income conllnu8S to be derlv8d from Indlvldual gSvlng and communily fundraising. This income Is raised during the year and Is therefore uncertain and subjecl lo external factors such as the economlc clSmale. Trustoes expect this lo remain the case In 2025-26. Given this conlexl. and the current eGonomlc uncertaSnly link6d to globol evgnt5, the Trustees have deslgnaled £45,9601400A of unreslri¢ted income gen¢raled in 2024-25) 10 support organisalional &xpendllure In 2025-26. This designation reflecls the Iruslg9S' assessment ol financial risk and helps ensurfr the charity's finanelal 8uslalnability and continuity of sgrvices. With a year-end carry forward of £139,497 lolal cash funds, £118,515 In unreslricled funds, and £45,960 designated, unrgslrlctod froe roserves as at 30 Soptamber 2025 stand at £72,55S. Thls Is equivalont to approxlmately seven months of operatlng expondlturp, based on planned ordlnary expendllure of £119,330 for 2025-26. Also carrled lotward is £20,982 restricted reserves. Detai15 of any funds materially In deflclt Further ftnanclal review detalls (Optional Informatlon) You may choose to Include addillonal Snformalion, whero relevant about.. the charity's princlpal sources of funds (including any fundraising)., how expondlture has supported the key Sour¢&$ of Funds Members contSnued lo be generous In 2024-25 and supported CAUK wlth donations lolalling £109,703. Around 44Q/o ol this came from two community fundraSsers, the Snowdon Climb for Cavernoma1£27,0001 and the Rochosler and Cobh8m Golf Club's fundralslng1£21,000 In this financlal yearl. This Is a wonderful Iribule lo our communlty and their belief in CAUK, for which we are v6ry 8ppreclallve. We are also very grateful lo the followlng Irusls, foundatlons and other organisalions for their gen8rous grants received during this roporling period: Nallonal Lottery Community Fund (Support, 2 Year81 Axiom Neuromoniloring ICouns8lling} Albert Hunt Isupportl Movement for Good, Benefacl Group David Family Fund (Support) Marsh Charllable Trust 12
objectives of the charity., investment policy and oble¢llv6s including any ethical investment policy adopted. Our thanks also go lo Recursion Pharmac8ullcal8 for Ihelr £1,678 8ponsorshlp for our 201h Anniversary Party, wllh fund r8celved In 2024-25. Section F Other optional information Going Concern The Trustees have reviewed the financlal position of the charlty and consldered Its sblllty to continuo operating for the foreseeable future, belng a perlod of at least twelve months from the date of approval of these financial stalemenls. At 30 September 2025 the charlly held unreslricled funds of £118,515, of which £72,555 repre8enl free reserves after the designallon of £45,960 to support Organisational eXndItUre in 202>26. The Trustees have reviewed projected Income and expenditure for the comlng year, considering the charity's income profile and ils reliance on individual glvlng, community fundraising and grant Incom8, whlch can be subjeol to exlemal factors. Income received slnc8 the year gnd has been in line with forecasts prepargd al the time these linanclal stslemenls were drafted. Based on Current forecasts, the level of reserves held and the charlty's ablllly to manage expenditure if required, the Trustees are satisfied that the charity has sufficient resources lo continue ils acliviliès and meet SIS obligations as they fall due. Accordingly, the Trustees con$lder It appropriate lo piep8re the financial slalements on a golng concern basls. Section G Declaration The trustees doclare that they hav9 approved the tru$tO98' report above. Slgned on behalf of thg ¢h?rity's trustees: Slgnaturelsl Full namels> Elizabeth Blackshaw Heather Dunbar PosltSon lèg Secretary) Treasurer Chair of Trustees Dato 13
CHARITY COMMISSION FOR ENGLAND AND WALE5 CAVERNOMA ALLIANCE UK 1197257 Receipts and payments accounts CC16a For the p¢rlod from 0111012024 301091202S To Section A Receipts and payments Unrestricted funds toth8 noaroBt Restricted funds Endowment funds Total funds Last year 1588 Note 11 to th• n8ar•Bt£ to th• ne8re8¢£ to thè noar•$l£ to the nearest £ A1 Rer•l tg Donaiions Granls SponsoTgh 106,703 2.760 3,000 30.907 1,677 109,703 33.657 1,077 2,621 66,269 5,000 4,931J 1,615 2,621 Sub total(Gmss income for AR) 112,074 35.584 147,658 77.814 A2 A$$ot and Investmènt sales. {see tablo). Transfer of bank b818nce from Unlncor orated Chari 106,844 Sub total 106,844 112.074 35.564 147,658 164,658 A3Pa ants Salarlès. Ni and pènsSon8 Norweglan Tax Auihorlly (see Note 41 R$¢ruilmenl 56.824 18.641 3.438 60,262 18,641 30,579 383 621 6,221 281 4.618 3,493 3,395 3.305 6,246 1,636 499 ,240 385 5,679 20 4,047 3,136 4,092 3.582 54 814 1,536 3,985 385 12.8YO 50 6A46 3,636 5,451 5.926 790 827 1,536 4,798 Consullan¢y IFSnance. IT, Therapy) T8I8phw & Broadband Gener81 rumng èxp$nses Fundraising Costs Travel other Events and Acllvities OIFw Cost6 Equlpm8nl and Otfice Supplles lThsuian¢6 Merchan(515& Qovernance ¢0818.. Independent examinatTh PRyroll ¢0515 Other 6,951 20 2,4QO 559 1.943 250 13 814 1,542 1,000 258 107,389 1,542 1,008 2S8 123.787 1,620 450 Sub total 16.398 6J.877 A4 As$Ot and Investment purchase5, {see tdblel Equipmenl 455 455 455 455 Sub total Totalpayments 107,389 16,853 124.242 68.577 Nel of receipts/(payments) AS Transfars between funds A6 Cash fund$ last year ènd Cash funds this year end 4,684 18.732 23,416 116,081 113,830 118,51S 2,250 20,982 116,081 139,497 116,081
Section B Statement of assets and liabilities at the end of the period Unrestricted fund to nearèst £ Re$tricled funds to near•st £ Endowment funds to nofjr¢$t£ Cateworigs Detall B1 Cash funds CAF Cash Account 4,505 CAF Gold Accounl 113,S05 20.962 PayPo1 505 Total cash funds 118,515 20,982 legr0frbWnrègvdth reeelF48 and paymgnl a¢6uni<Sl) 1)1< Unrèstrleted funds R8strl¢t•d funds Endowmgnt funds Detalls Olherd8blois to nearqst £ to n•Erfrst£ B2 Othgr monetary assets 2M41 Pur¢ha8e$ lor Evgnl OGtober2025 1,S02 Fund to whlch as$•t bolo curvont valu? Detalls o$t lopllonDII Fund to whlch 886fr1 belon Re$lrlolBd Current valuo Dgtails Printsr Imedlcal eleri $) Coet loptlrJnaD 4S6 B4 Assets retalned for th¢ charlty's own uso UNeslriclg 180 6 Lapiops Vnresirlcted Fund lo whlch relatè8 Vnreslrtctsd Amount du• Wh¢n du? loptlonall Details PAYE B5 Llabllltles 918 Accountancy Unrèslrfcied 1,926 Tradg crediiors Re¥trSoled 750 Slgn8d by ong or iwo Irus1805 on behalf ol all the Iru$tse8 Prfnt Namè Data of approval Slgnalur8 Ol&cl4 knj Heather Dunbar 1£1+12fJi6 1910412026
Cavernoma Alliance UK 1197257 Notes NOTE 1 During tho prèvlou8 year the chartl83 acllvi188 Irans19rfed from the old charfty Ino SC0484581 lo a new CIO Ino 1197257). The nole below oomblnes the Iransa¢llon$ for the chartlles. Old Entity IN SC048458 1 1114145) New CIO Enllly (No 11972671 roTAL Perlod 0110212024. 3010912024 0111012023- 301W2024 0111012023. 31K112024 lo n•r1£ to ngav•st£ Re¢elpts Donallons Grants SponÈorshlp Recelpls fiorn fundraislng acilv51h?5 Gro$s r8celpls from other GhgfSlablg aclhvllles Other incorne Interest 18,351 15.173 66,269 5,000 4,930 84,620 20,173 4,930 619 1,615 77,B14 2,234 111,957 Sub total 34,144 R¢¢elpts from as59t & Investment sah$ Proceeds from Sale of fixed assets Procaeds from ÉalÈ of Inv8slm8nls Sub lotol Total rocolpts 34,144 77,814 111,957 Payment8 Salarl8s,Nl and pen$lon8 Recruiltnenl Tralnlng ConsullancylFln8nce, Webslte, Therapyl Prèmls8s C0515 Telephones & Intemet Genaral Runnlng expanse5 Fundraislng costs Trav81 Other Events & ACU88 Olher cost$ Equlpm8nl and Offl¢e Supplies Insuran¢ M8rchandiso Prlntlng & Posl8U8 Other ¢osls- reslru¢tur8 Olhgr Governance costs.. 17,222 30,579 383 621 $.221 47,801 383 663 7,394 396 612 5,777 5,485 4,214 3,396 5,907 1,664 1,26B 42 1.173 396 331 1,169 1,992 629 91 46 28 789 281 4,618 3,493 3,385 3,305 5,859 1,636 499 5,240 5,240 80 387 467 Independent examinaOn Payroll costs Olher 1,620 450 1,620 882 432 Sub total 24,592 68,677 93,169
Cavernoma Alliance UK 1197257 Notes continued Paymonts relatlng to a559t Investmoht movem8nt8 Puichas8s of fixed assets Purchas8 of Investments Sub total Tot#lp•ymonts 24.592 68,577 93,169 N•t r&celpts/{payment$J 9,552 9,237 18,788 Transfer¥ to I (from) funds Surplu¥ /(d¢fi¢lt) foryear 9,5S2 9,237 10,788 FVNDS RE¢ONCILIATION Tolal Fund¥ lonarg$t£ Cash bank balances al Start ofyear IDèf5tiV Surplus Shown on recglpl$ and pa)man18 8ccount Cash and bonk b8lancoS at end of ye4T 97,29Y 18,788 116,081 On the F$bwary 2024, the TTansferAgreement and Veslng Dedaratlon wew sne0 and 8$$ets, InCIlIng fund8 Ix th8 old énllty Icharlty number 11141451 bank account transferred lo the new 9nUty Icharlly number 11972571. The tolal transferred was £106,844, and Ihis is Strn in Ihe Seotlon A4 comp8r8Ive of Ihe okj entlles a¢¢ounts and sectlon A2 In th8 new enliU0s accounls. NOTE2 88fc(8 the 8nd of Ihè 2024-25 financial yeaT, o grant of £18.907 was awarded by th8 N8tkJn81 Lottery Communlty Fund lo fund pe&r-suppori from 1 October 2025 to 30 S8Ptemb8r 2027. As ac¢ounts are prepared on a re¢elpts and paents {¢ashl basls, th8 grant has been recognlsed in the 2024-25 8ccounls then recelved, ollhough th8 fundlng YAII be appllgd lo acllv1118S across lh& 2025-26 and 2026-27 financlal y8ar8. Thls grgn¢ oc¢ounis lor tho rnaiorflyof th& differencè betW88n Incom& and $xpendllur8 in the year. NOTE 3 At thg 30 Soptgmber 2025 the charity held total cash funds of £139,497, th18 compri898 £118,515 unreslrfded fund$ and Indude8 £45,960 funds whlch have been deslgnatad lo suppori operallonal expendllurfr In the perlod endlng 30 Septgmber 2028. The charlty also h&ld reslrlcled fund5 at 30 SÉpl8mb8r 2025 of £20,982, of whith £2,250 relat0$ lo th6 Caver no more essay prize fund and £18,732 r0181s to Dlr8Ct Support fund. NOTE 4 Durfng the PTevious fin8nd81 year12023-241 th8 charlty re¢olved tsx advlca about a Norweglan tax Ilab115ty flrsl Idenllfied a8 polentlal con¢arn by our Chailty Manager and Chalr lolltswlng their appointm¢n18 In 2022-23. Thls11oblllty ar088 as memberof the stsff team began workin9 from hr>m8 In NoFway Sn 2021-22 towards the ollh8 pandemlc, and Ihere was a rnlsund8r81andlng atM)utthe tsx Impllcauons adslng In resp8Ct of Ihls. As an oultomg of thSs advlce CAUK i*nla¢lÈd Ihe Norweglan tax aulhorftles lo disclose tho 18x118bllity, and the ht)m8- wort(Ing arrangem&nl that had prgclwi8led ihi8 m8ttereame to an end al th9 Start of 2023-24. Thls maller was seltlad In March 2025, followng ¢orrespondence with th8 Norway18x 8ulhorill88 and all monie5 owed hav& now been pald. A$ an outcome of Ihls m8tter the Board of TrusleeB have $lron9then8d governaD¢e wacllc88 and sIgnff$ r8qulrÉd to ensure such a mallèr do8B nol ar1s8 agaln. 11
CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Roport to tha trustees Cavernoma Alliance UK On accounts for Ihè yèar ended 30 September 2025 Charlty no (if any) 1197257 Set out on pages 1-17 I report to the trustees on my examination of the accounts of the above charity for the year ended 3010912025. Responsibilitles and basls of report As the charity's trustees, you are responsible for the prèparation of the accounts in accordance wlth the requirements of the Charities Act 2011. I report in resp8ct of my examination of the Trust's accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under sgction 145(5)(bJ of the Act. Independent I have completed my examination. I confirm that no material matters hav6 examiner's statement come lo my allention in connection with the examination which gives me cause to believe that in, any malerial respect.. the accounting records were not kept in accordance with section 130 of the Charities Act. or the accounts did not accord with the accounting records., or the accounts did not comply with the applicable requirements oncerning the form and content of accounts set out in the Charilies Regulations 2008 other than any requirement that the accounts give a 'true and fair, view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination lo which attention should be drawn in this report in order lo enable a proper understanding of the accounts lo be reached. Signed: Date: Name: Mrs S J Hough Relevant professional qualification(sl or body (if any): FCA Address: Edwards and Keeping, Chartered Accountants Unity Chambers, 34 High East street, Dorchesler, DT11HA IER