Trustees. Annual Report for the period Period start dale Period end dale From 30 09 2024 Section A Reference and administration details Charlty name Cavernoma Alliance UK Other names charlty Is known by CAUK Reglstered charlty number Ilf any) England and Wales 1197257 Charlty's prlnclpal address Po Box 366 Watlington Oxfordshire Postcode OX101GF Names of the charlty trustees who manage the charity Dates a¢tgd If not for who10 year Name of person {or body) entitled to appolnt trustee Ifan Tru8teo name Ofllcfr Ilf any) Heather Dunbar (C) Mark Farrar {F) Barbara Edmonds (F) Jade Davies {C) Roxanna Dixon (C} Emily Fletcher (C} Alex Ford (F) C8vernoma Alliance UK is a charity run by and for the cavernoma community. Given Ihe importance of lived experience we pride ourselves on having a Board of Truslees that is reflective of the community we support. C = Trustee with cavernoma F= Trustee who has immediate family with cavernoma. Names of the trustees for the chaTlty, if any, (for example. any custodian trustees) Name Dates acted if not for whole ear Nla Nla Chair Treasurer
Names and addresses of advlsers Ioptlonal Informatlonl e of advlser Name Address Clinical Medical Professor Rustam Al- University of Edinburgh Advisor Shahi Salman Clinical Medical Advisor Professor Diederlck Bullers (appointed 11th of September 2024) University Hospital Southampton Name of ¢hief executlve or names of senlor staff members (Optlonal Informatlon) Helen Evans, Charity Manager Section B Structure, overnance and mana ement Descriptlon of the charity's trusts Constitution Type ofgoverning document How the charity is constituted Charitable Incorporated Institution ICIOI Trustee selection methods Ip.!l. pyoiiileLI l)y. el¥i.Igd by) Elected I re-elecled at Annual General Meeting Between AGMS, can be elected by the Board Addltlonal governance18sues Ioptlonal infom)atlon) You may choose to include additional infom)ation, where relevant, about.. policies and procedures adopted for the induction and training of trustees., the charity's organisational structure and any wider network with which the charity works., relationship with any related parties., trustees, consideration of major risks and the system and prooedures to manage them. Change in Legal Entity In 2021, in keeping with common practice across the charity sector a decision was taken in principle al CAUK'S AGM Ihal year to transition lo a Charitable Incorporated Organisation (CIO) legal entity, a more modern legal structure without any olher changes to the way Ihe charity operates. Due lo the pandemic and then later on changes in key staff and Trustees in 2022-23, the transition to this legal entity took longer than anticipated. On the 111 of February 2024, the Transfer Agreement and Vesting Declaration were signed and assets transferred from the old entity Icharily registration number 1114145) to the new entity (charity registration number 1197257) following the opening of a new bank account. It look longer than anticipated to change direct debi18, Standing orders and other incomelexpendilure meaning the old bank account remained open until December 2024 with a small portion of funds transferred at this date. Aside from the change in legal enlily effective the 191 of February 2024 there were no other material ¢hange5 to the charity. We hope the preparation of 0 Sets of accounts and annual reports mid-year does not cause undue confusion or concern to potential donors, as this matter is lo all inlenls and purposes a technicality lo ensure we are operating within the most modern legal framework for a charity. For clarity, in 2023-24 our organisational income was £111,957 and our organisational expenditure was £93,169, with 8 months expenditure held in reserves. Differences in the figures listed on the Charity Commission website are due to the transfer in funds as we moved from our old entity to our new CIO entity.
I Section C Objectives and activities Summary of the objects of the charity set out In Its governlng document 1. To promote and protect the physical and mental heallh of those with Gavernoma through the provision of support, education, research and practical advice. 2. To advance the education of the general public in all areas relaling to cavernoma. Cavernoma Cavernomas are abnormal clusters of blood vessels with thin, leaky walls, resembling raspberries. They can develop in the brain and spinal cord and may bleed at any age without warning. Cavernomas affect around 1 in 625 people in the general population, equating to around 108,000 people in the UK. Most people with a c8vernom8 remain asymptOTnatic. Symptomats'c ¢avernoma is rare, affecling an estimated 1 in 2,700 people. Symptoms can include haemorrhages, seizures, and other neurological issues. Trealmenl options include monitoring ('wail 2nd see,), neurosurgery, or stereotactic radiosurgery. In most cases. the cause of cavernoma is unknown. However, around 1 in 5 cases have a genetic origin, with a 50 /0 chance of passing the gene lo a child. If an individual has only a single brain cavernoma, a genetic cause is unlikely. Cavernoma Alllance UK Dr lan Stuart founded Cavernoma Alliance UK {CAUKI after a life-¢hanging ¢avernoma bleed. Struggling wlh a lack of information and support, he was determined that no one should face cavernoma alone. In 2005, his vision becam8 a reality when he started CAUK. What began as a volunteer-led helpline from lan's home in Dorchester grew into a national charity- Today, we support over 4,000 members with a small, remote team of part-lime staff and self-employed contractors. Volunteers remain at our core, with more than 50 running the helpline, buddying, meet ups, online Chats and medical alert cards. We provide clinician-approved information via our website, social media, webinars, and annu81 conference, overseen by our Advisory Board. Committed to research, we proudly enabled novel gene therapy studies at University College London in 2024 by securing £100,000 in funding for UCL, and have been the Patient and Public Involvement IPPI) Lead in all of the most recent Cavernoma research studies in the UK. Summary of the main activities undertaken for the publlc benefit in relation to these objects Ilnclude within thls sectlon the statutory declaratlon that trustees have had regard to the guldance Issued by the Charlty Commlsslon on public benefltl Vlslon To have a cure for cavernoma thal people living in the UK can access Alms To provide peer-led support to people with cavernoma and Iheir supporters living in the UK To improve consistency in the ¢urrent diagnosis and Ireatment of UK palients To promote research to cure cavernoma and advocate for UK access lo new treatments Values Collaboration Achieving more by working together Information - Providing reliable and accurate information Inclusion - Embracing and valuing every voice Empowerment- Supporting informed health decisions TrusbNOrthiness Acting with inlegrity and reliability Objectives Support- Every person living wilh cavernoma in the UK will be aware of CAUK'S peer-led support, and have their request for support met as we grow existing services.
Information & Cllnlcal Care - People Ilving with cavernoma and the professionals supporting them will have access to Teliable, accurate and up lo dale information about cavernoma and will use this lo improve care and support. Research - Both children and adults with cavernoma will have access through the NHS to new and belter treatment options, which have proven lo be safe and effective. Under-pinning Operations- CAUK will be a resilient organisation thal is responsive to a changing world. Summary 2023 to 2024 was a milestone year for Cavernoma Alliance UK. Thanks to a collaboration with Cavernoma Ireland and the generosity of a CAUK member philanthropist, we secured nearly £1 00,000 In fundlng for Unlverslty College London to launch the UK'S first gene therapy research project for cavernoma. Although clinical trials remain some way off, this marked a major step forward in the search for a cure for familial cavernoma, which is inherited and affects around 20 per cent of people living with the condition. This success was underpinned by our newly refreshed and expanded Advisory Board, which brings togelher the UK'S leading scientific and clinical experts on cavernoma alongside experienced patient advocates. Itwas also a year oflransformation In how we support our rnemrs. We embraced the power of volunteers and transltloned to providing all support services, with the exception of counselllng and our interactive webinars, through our dedicated team of 59 peer-supporter volunteers. This work was coordinated by our Volunleer Manager and Member Support Assistant. While the shift was prompted by a forecast reduction in income for 2023 to 2024, il is one we have fully embraced.11 enables more people lo connecl with others in the cavernoma community who share Iheir lived experience. Thanks to the incredib18 efforts ol our volunleers and staff, we were able to provide diTre¢t support to 1205 people this year, with over 30,000 people reached through our website, newsletter and social media. We are incredibly grateful to our volunteers for making this possible. Reflecting on th8 challenges of last year, the Board dodicated time to developing the charity's first five-year strategy. A key element in shaping this work was our Lived Experiences SuThey, which received nearly 500 responses. The findings highlighted the significant difficulties still faced by peDple with cavernoma. On average, respondents wailed nearly one year for a diagnosis, one third were misdiagnosed before receiving the Correct diagnosis, and many reported missing a combined total of nearly 400 days of education or work following a stroke. The survey helped inform four new strategic objectives and the revision of our vision, aims and values, which we outlined in the preceding section. The resulting strategy, with clearly defined outcomes and oulpuls, is ambitious, but with the support of the cavernoma community, we are hopeful of making meaningful progress over the next five years. You can find our strategy online at htt s:Ilbit.I ICAUK-Plan-2025-2030. Other notable successes this year Included: The publication of the CARE Pllot trlal results, the UK'S largest cavernoma study, which demonstrated that research of Ihis kind Is possible and opened the door for further studies A significant Increase In our 50clal medla reach, wlh more than 7,250 people now following us across Facebook (Page and Support Group), Inslagram, Linkedln and YouTube The return of our In-person meet-ups. with 100 people coming logether at 10 venues across the UK as part of Brain Awareness Week Our second Snowdon Climb during Cavernoma Awareness Month, which raised both awareness and nearl £20 000 to su eo le affeoted b cavernoma
The launch of bNO new Cavernoma Stories films, with Jade s Slory named a finalist in the Big Syn International Film Festival The launch of our new Schools and Colleges Gulde for Cavernoma We are a charity run by and for people living with cavernoma. We could not do what we do without the dedicalion of our incredible volunteers. including peer supporters, buddies, community hosts, fundraisers, grant writers, IT helpers, alert card volunteers and Trustees. We are also deeply grateful to the trusts, foundations, sponsors and individual donors whose financial support, alongside the efforts of our community fundraisers, makes our work possible. You may choose to include further statements, where relevant, about.. Norway Tax Llabillty During this financial year the charity received tax advice about a NoNay tax liability first identified as a potential concern by our new Charity Manager and Chair following their appointments in 2022-23. This liability arose as a member of the staff team began working from home in Norway in 2021-22 towards the end of the pandemiG, and there was a misunderstanding about Ihe tax implications arising in respect of this. As an outcome of this advice CAUK contacted the Norwegian lax authorities lo disclose the lax liability, and the home-working arrangement that had precipitated this matter came to an end at the start of 2023-24. This matter was settled in March 2025, following correspondence with the Norway lax authorities and all monies owed have now been paid. As an outcome of this matter the Board of Trustees have strengthened governance pra¢tices and sign-offs required lo ensure such a maller does not arise again. policy on granlmaking; policy programme related investment., contribution made by volunteers. Section D Achievements and performance Summary of the main achSevements of the charity during the year Overall As an organisation run by and for people living with cavernoma, what matters most to us is the difference our members tell us we are making. Each year, we invite everyone who has received support lo share their views on how we are doing. We are proud to report thal more than nine in len people feel our 8UPPQrt has made a subslantlve difference to their overall quality of life. When asked about their experience of support this year, the following percentages of people told us they strongty agreed or agreed with the following statements.. I have a better understanding of cavernoma (100 % ) I feel more empowered to advocate for belter care from professionals (95 % I feel more resilient when fa¢ed with challenges related to cavernoma {950A) I have new coplng strategies for managing Gavernoma {940/oJ I feel more connected with others from the cavernoma community193 % } It has made a positive difference to my mental health and wellbeing (93 % In addition, we received an outpouring of positive feedback. Here is just a small selection of the comments shared wllh us.. Being part of this group gives you peace of mind in all the Chatler. You have so many fears and questions when you are diagnosed and this group is amazing at calming you down and giving you the knowledge, you need to cope. They have been a life-changing experience. '1 would not be livin as well as l am without ou all. Thank ou.
Section D Achievements and performance Speaking with others who have similar experiences helped ikne feel less alone, and their webinars gave me a better understanding of my condition. Their support has made a real difference in how I manage cavernoma. Among our achievements, it is also importanl lo acknowledge areas wher& we can do better. Members lold us they would like to see greater visibility of ethnically diverse people within our community. more tailored support for Ihose living with spinal cavernoma, and improved partnership working. These are all important priorities that we will be taking forward Into 2024-25 as we continue to identify opportunities to improve. In the section below, we go into more delail about the drfference we've made this year covering the following activities.. • Helpline- 277 people, 406 emallslcalls Counselling - 22 people Buddying -28 people In-person meet-ups - 100+ people Interaclbve webinars - 9 webinars, 250 people Online Support Groups- 150+ registered for drop-ins & 2,400 on Facebook Membership- 296 new members Medical Alert Cards - 77 cards issued Medical and Scientific Advisory Board - 15 experts & 8 lived experience members Information Resources - Education Gulde, Hormone Therapy Advice, new Films Awareness Raising - 7,250 social media followers Research- CARE Pilot, CARE Prep, Gene Therapy, Lived Experiences Report Volunteering -59 volunteers, of which 10 newly trained Helpline Living with a rare neurological condition can be an isolating and lonely experience. For many people, CAUK'S helpline is the first time they connect with someone else who understands what they are going Ihrough. Each year, around 160 people are diagnosed with cavernoma, and the NHS website signposts exclusively to CAUK for support. Most of the ernails and calls we receive come from people who have been newly diagnosed alongside people with new symptoms, Ireatmenl concerns (e.g. surgery) and increasingly poor mental health. In 2023 10 2024, we supported 277 people through 406 helpline calls and emails and have seen this figur& grow further in 2024 to 2025. Since 202310 2024, our helpline has been delivered enlirely by Specially trained volunteer peer supporters. all of whom have lived experience of cavernoma. People can access the helpline by emailing helpling@cavernoma.org.uk or by booking a telephone call using our online system at ww.calendl -comlcaukhel linel honecall. This year, we trained 10 new volunteers lo provide peer support via the helpline. All volunteers receive safeguarding training and have access to our clinician-approved helpline handbook. They are DBS and reference checked. receive regular supervision from our Volunteer Manager, and are part ofan active and supportive WhalsApp group. This year marked the first tSme the helpline has been delivered entirely by volunteers, supported by a booking system that accommodates volunteer availability. This replaced the previous model where a phoneline was answered during office hours. The change was prompted by funding challenges in 2022 10 2023, which led to a 26 per cent reduction in staff hours. However, it was also a strategic decision to emphasise peer-led support and create more volunteering opportunities wlhin Ihe cavernoma community. We anticipated a drop in Ihe number of people supported during the transition, which has been the case. However, we are already seeing engagement increase in 2024 to 2025, supported by ongoing promotion through our social medla channels.
Section D Achievements and performance Counselling Cavernoma can have a profound impacl on a person's mental health. The uncertainty of not knowing if or when a bleed might occur, the effects of physical symptoms su¢h as seizures or neurological deficits, recovery followng treatment such as neurosurgery, and. for those with the familial form, the knowtedge Ihal the condition may be p8S8ed on, all contribute lo significant emotional strain. This year, we provided ono-to-one online therapy to 22 adults and young people, each receivlng four or more sessions with a qualified therapist who has over six years, experience supporting people In the cav8rnoma community. Our counselling servlce can be a vital lifeline, particularly for those facing long wailing times for NHS Counselling. Once a request is made, OUT therapist typically makes contact within rive to ten working days, with the first appointment arranged soon afterwaids. Receiving timely, speciallsl support from someone who understands cavernoma can be life-changing. In the words of one person who accessed our service.. "Just wanted lo say Ihank you once again.. Your encouragement and support helped a great de81, and il really made me think about my life and what I need out of it to survive.. Buddying Many people who come to us, whether after counselling or through the helpline, are looking for someone who truly understands what they are going through. Living with cavernoma can feel isolating, and being able to connect with someone who has similar lived experience can make a real difference. Our buddying service matches individuals with trained volunteeT peer supporters who provide emotional and practs'cal support through regular phone ¢alls and emails. This ye8r, 81ongside existing buddying partnerships, 26 new people were matched with a volunteer peer supporter and 22 of the mat¢hedpartners were still in a buddying partnership by the end of the current year. Most buddying partnerships last past one- year, although some continue for longer. Many end with lasling friendships, which is always wonderful to see. Our buddying service, alongside our helpline, is one of CAUK'S longest standing and most valued forms of support. It continues to be a popular way for people to feel heard, supported and less alone. In the words of one person we supported. I would not have coped anywhere near as well without CAUK and my caverbuddy.11 has made such a difference lo have someone who really gels it to talk to." In-Person Meet-ups This year marked a relurn to in-person meel-ups, with 10 meet-ups held across Ihe UK, including In Scotland and Wales, wlth around 100 people attendlng. Our meet-ups were led by volunteer peer-supporters, all with lived experience of cavernoma, with the aim of brlr)ging people together in their local community to make new cavernoma connections, offerir)g each olher mutual understanding and support. Our meet-ups also included a special all-day meel-up for children with ¢avernoma held at an in¢lusive activity centre. The feedbaGk from the meet-ups was very positive. In the words of one person.. 'It was wonderful lo sit with others living with Cavernoma & make new friends. Each of us had a unique & important story to tell. We are all very keen to meet up again soon.. After each meel-up people were given the opportunity to join a local cavernoma community WhalsApp group, moderated by the volunteer who led Ihe in-person meel-up.
Section D Achievements and performance Going forward il'$ our intention lo host these meet-ups each year duiing Brain Awaieness Week in March, with the option for volunteer peer-supporters lo then arrange meet-ups in between those times if there's interest from members. All meet-ups are advertised widely by CAUK on social media, with volunteers supported through facilitator packs, and supervision from our Volunteer Manager. Interactive Webinars This year. we made the decision to formalise our popular webinar series by scheduling them every other month, typically on the last Wednesday. In 2024 to 2025, we increased the frequency to monthly, enabling us to reach even more people. Ovor tho course of the year, we held nine webinars, with more than 250 people attending live and over 2,600 watching the recordings via our YouTube ¢hannel.' htl s'.Ilwww. oulube.coml cavernomauklvideos. Our webinars usually allernate between sessions led by the UK'S leading cavernoma specialists and those led by individuals from our community who are experts by lived experience. Each session includes a presentation followed by an interactive question and answer segment, offering members ofthe cavernoma community a valuable opportunity to connect, share and learn from one another. We actively encourage participants to use the chat function during webinars to foster convèrsation and connection. In 2023 to 2024, our webinar topics included.. Managing Tinnitus with Cavernoma The Spinal Cord and Cavernoma Oral Contraception, HRT and Cavernoma Lived Experience Panel Discussion Personal Independence Paymenls IPIP) and Cavernoma Predicting Familial Cavernoma Cavernomas.. A Randomised Effectiveness (CARE) Study Research to Treat Cavernoma with Medications Research to Treat Cavernoma with Focused Ultrasound Online Support Groups Each month, we offer members of the cavernoma community the opportunity to join an online drop-in support group. These sessions are a vital parl of our support offer, especially as many people with cavernoma face barriers to attending in-person events, such as reduced mobility or neuro-fatigue. Participanls can choose between two group formals. Our CommLAnity Chat is led by our Volunteer Manager and offers a relaxed space for people lo meet informally, share experiences and connect with others affected by cavernoma. Alternatively, our Therapeutic Group is facilitated by our Counsellor, who has in-depth knowledge of cavernoma and leads small group therapy sessions with a different theme each month. By the end of the year, more than 150people had registered to attend these monthly support groups, with an average of 10 or more participants at each sesslon. These groups are open to anyone living with cavernoma, including individuals with a diagnosis as well as parents, carers and olhers who provide support. Alongside our monthly online support groups, we also have a very active closed Facebook Group moderated by CAUK. This group now has nearly 2,400 members with multiple new posts each day providing members wSth much ne6ded mLrtual support.
Section D Achievements and performance Membership Everyone affected by cavemoma, whether they live with the condition 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 collnects people with a community that understands what they are going Ihrough, which can be lif&changing when living with a rare condStion that most people have never heard of. Membership also gives access lo our core support services, including buddying, counselling, meet-ups and medical alert cards. These services are reserved for members so that we can maintain a safe and supportive environment where people can connect and feel understood. This year, 296 people reglstered as new members of CAUK, bringing our total membership to 3,951 people. This represents an 80/0 growth and ieflects the growing need for support, information and conneclion within the cavernoma community. Medical Alert Cards For people living wlh cavernoma, the risk of a selzure or haemorrhage makes it especially important to carry clear medical information in case of an emergency. This year, CAUK provided 77people with a free Medical Alert Card, personalis8d with their photo, name, emergency contact details and essential information about their condition. These cards can offer real peace of mind to those affected and their families, ensuring that emergency responders have the information they need to act quickly and appropriately. We are Incredibly grateful to our dedicated volunteer who kindly prints and posts each card, helping make this small but potentially life-saving support possible. Improving Access to Information At Cavernoma Alliance UK, we are committed to ensuring that everyone affected by Cavernoma has access lo clear, acGurale and supportive information. This year, we began a major review and update of our information resources to make sure they reflect the latest research, respond to the real concerns of our community and are as accessible and inclusive as possible. This work is especially Importanl because accessible information on cavernoma is still limited. Aside from a brief summary on the NHS website {www.nhs.uklconditionslcavérnoma . most published material is found in complex academic papers. For many, our resources provide a first point of clarity after diagnosis and are used lo inform conversations with GPS, teachers, employers and other professionals who may not have encountered the condition before. We are proud that our website continues to serve as a trusted and widely used source of information. This year, over 30,000 new people visited our website. While we primarily serve people across the UK- who made up 40.5 per cent of visitors- we also support growing international audience, reflecting the global need for reliable information on this rare condition.11 is encouraging lo see that so many people are turning lo CAUK as a first poinl of support and guidance. As part of our efforts to strengthen our Information offer, we also refreshed and expanded our Advlsory Board. This group now includes 15 sclentiflc and clinlcal advlsors and experts by experlence, formlng a strong multi-disciplinary team that helps ensure our content is Iruslworthy and Televant. A full list of members is available at www.cavernoma.or .ukladviso -board, We are fortunate lo have Professor Rustam Al-shahi Salman ¢ontinuing as Neurologlcal Lead and Chalr, with Professor Dlederlck Bulters joining as Neurosur Ical Lead. We extend our sincere thanks to Mr Nell Kltchen, who sle ed
Section D Achievements and performance back from co-chairing the Board this year and into a patron role, followin9 many yeais of valued leadership and service. with expert Input and guidance, we publishad the followlng new and updated resources this year. We also have a full sohedule planned for the Goming year to further expand and enhance our Informatlon offer: Gulde for Schools and Colleges www.bit.I ICAUKGuidanceSchoolsColle Lived Experiences Report htl 5'.Ilbit.I IEuro eanCaveTnomaPatientRe 0rt2024 Cavernomas: A Randomised EffectSveness Study (CARE) www.cavernoma.or ,uklcare-slud HRT and Oral Contraceptlon Guidance www.cavernoma.or Jade's Story: Famlllal Cavernoma www.bil.I ICAUKvideo es Raislng Awareness When someone receives a diagnosls ofcavernoma, It is common for those around them, including family, friends, teachers, employers and even healthcare professlonals, lo have never heard of the condition. Although rare, cavernoma affects an estimated 108,000 people in the UK, enough lo more than fill Wembley Stadium. Yel the lack of awareness often leaves people feeling isolated, misunderstood and without the support they need. Cavernoma Alliance UK is working hard lo change that. This year, we placed renewed focus on raising awareness Ihrough our social media platforms. We now post six days a week across Facebook, Instagram, YouTube and Linkedln, with daily themed content designed to inform, engage and connect. As a resutt, ourreach on social media has grown to over 7,250 followers, nearly double our registered membership, helping us extend our voice and impact far beyond our immediate community. Among the hlghlights of our awareness-raising efforts were major campaigns for: Rare Disease Day {29 February), Includlng attendance at Westminster networking events Brain Awareness Week {11 to 16 March), c818brated with in-person meet-ups across the UK Cavernoma Awareness Month In June, featuring our Annual Snowdon Climb, Annual Conference, and widespread online engagement Cavernoma Awarene$$ Day {14 June), marked by communities across Europe and the United States In addition to these campaigns, we were proud to represent CAUK at key professional and scientific events. These included.. Our Volunteer Manager sp8aking at the prestigious 10th European Stroke Organisation Conference in Basel, Switzerland, sharing her lived experlence of symptomatic brainstem cavernoma Allendance by our Founder and CAUK volunteers at the Soclety of Brltish Neurologl¢al Surgeons Conference in Edinburgh, where Advisory Board member Dawn Smith presented a research poster Our Charity Manager participating in the Asplre 8losclences 'Collaboratlon for Change. event at the Royal Society of Medicine, and attending Ihe Inaugural Vascular Voices Network started in 2024 10
Section D Achievements and performance Ongoing involvement in the European Cavernoma Alliance. where CAUK plays a leadership role chaired by our Charity Manager By building partnerships, sharing lived experiences, and engaging in national and international forums. we are making cavernoma better known and better understood. Every Conversalion, post, and event helps bring us closer lo a world where no one feels alone in Iheir diagnosis. ResearGh Ploneerlng Gene Therapy Research for Familial Cavernoma Over 9 months our Charity Manager led a project lo design and secure funding for the UK'S first gene therapy research proje¢l to treat familial cavernoma. This was 8 huge step foward as it marked the UK'S first pre-clinical research for cavernoma, and only the third knowr) project of il's kind globally. CAUK were pivotal in bringing together research teams at Universily College London (UCL) who specialise in translation gene therapy research. Uppsala University who have a cavernoma mouse model, and funding from Cavernoma Ireland and a CAUK member philanthropist. As an outcome the project team was established, the research proposal shaped and ultimately £100k secured in funding io kick- start this proof of concept research. Whilst we are likely to be at least 10 years away from clinical trials, this research marks an Important first step fr)ard. CARE Study.. Advancing Treatment Research This year saw the publication of the Cavernomas.. A Randomlsed Effectiveness (CARE) pilot study, a major mileslone in research into Ihe treatment of symptomatic cavernoma with more information available at htl s'.Ilcavernoma.or .uklcare-stud l. The study assessed the feasibility of conducting a larger randomised trial comparing medical managemenl alone with medical management combined with surgery (either netsTosurgery or stereotsctic radiosurgery). Belween August 2021 and January 2024, 72 participants, 68 adulls and 4 children, were recruited across 28 hospitals in the UK. The study successfully met its recruitment goals and showed that a larger trial is achievable. Importantly, stroke rates were similar in both treatment groups, and no serious adverse events were reported. Cavernoma Alliance UK was proud to be a co-applicant in the study, playing a key role in ensuring the patient voice was embedded throughout. We helped develop patienl-facing materials and coordinated the Patient Advisory Group, which guided the study design and delivery. The success of this pilot study lays the foundation for a future international trial Ihat could inform better, evidence-based treatment choices for people living with symptomatic cavernoma. CARE PREP Study.. Preparing for Future Drug Trials This year, the CARE PREP study was published, offering hope for future drug trials for cavernoma in the UK with more information lo be found at hlt s.'Ilww. ournalslibrar .nihr.ac.uklemel ublished-articlesiTYUP6982# lain-lan ua summar . At present, surgery is the only available Irealment for symptomatic cavernoma, but many in our community are seeking safer and less invasive options. CARE PREP is a vital piece of research that explored how future clinlcal trlals could be designed lo tesl drug treatments for cavernoma, including the potential for using repurposed drugs, medications already approved for other Conditions. The study sets the groundwork for making drug trials possible in the UK and helps move the conversation forward toward new treatment possibilities. Cavernoma Alliance UK was closely involved from the outset, ensuring the patient voice shaped every stage of the research through our role in Patienl and Public Involvement. Our contribution hel ed ensure the slud Teflected the real-world needs and ex eriences
Section D Achievements and performance of people living with cavernoma. We are pioud to have played a parl in this Important step towards developing future treatment options for our community. Volunteerlng This year we completed a successful round of online training for 10 new volunteers, covering key areas such as peer-lo-peer support and safeguarding. Additional, role- specific training was provided for those supporting the helpline, with volunteers choosing to assist either through email responses or phone calls. Each volunteer received a role description, relevant policies, and a volunteer declaration form, along with access to our secure members, area containing handbooks, the latest volunteer newsletters, and all current policies. Volunteers were also trained on using our CRM contact log system to ensure consistent and secure record-keeping. To foster community and collaboration, a dedicated Volunteers WhatsApp group was set up, with a separate announcements section for important updates. An additional, smaller WhalsApp group was crealed specifically for helpline volunteers to coordinate Monday to Friday coverage and provide more focused peer support. At the end of the year, there were 59 volunteers including.. 49 Peer Supporters {Helpline, Buddying, Online Support Groups, In-Person Meet-ups> lx IT support and medical alert cards lx Grant writer lx Secretary and communlty fundralsing 7x Trustees Building Capacity to Deliver Our Strategy As part of a restructure to align with our new strategy for 2025 to 2030, two new part-time roles were created to strengthen our capacity in key areas. Both vacancies were successfully filled in December 2024, and we are pleased to report that both new team members remain in post and are performing well. By the end of Ihe year, our team comprised four part-time staff.. Helen Evans, Charity Manager (23 hours per week) Tracey Hammond, Volunteer Manager (17.6 hours per week) Member Support Asslstant (7 hours per week) Events and Off Ice Assistant {7 hours per week) While we remain a small team, our impact continués to grow, mada posslble by the unwavering support of our volunteer network. Their dedication and lived experience allow us to deliver meaningful, far-reaching support to the cavernoma community across the UK and beyond. Section E Financial review In 2023-24 the charity's reserves policy was reviewed. Brief statement of the charity's policy on reserves In undertaking thi$ review particular consideration was given to th8 growth in individual giving and community fundraising as a sosjrce of income {780/ul, and the likelihood that this would continue to be the case going forward given increasing challenges securing grants from heavily over-subscribed Trusts and Foundation, with no grant income secured for 2024-25 at the close of 2023-24. 12
Given the uncertalnty of income from individual giving and community fundraising (e.g. risk of event cancellation due lo force majeure events like a pandemic} and the lead time to fundraise should there be a substantive loss in income du8 to a key event cancellation, a decisiori was laken lo adopt a more conservative approach to the charity's reserves posllion, retaining reserves of 9 months of planned expenditure. A declsion was also taken lo deslgnate 509/0 of un-restricted income to organisational expenditure for the coming year, given the uncertainty of the charity's principle income source. On this basis, as al the 30 of September 2024 the charity held reseNes of £72,403, equivalent to 8 months running costs given planned expenditure of £115,766 in 2024-25. Details of any funds materially in deficlt Further financial review details Ioptlonal Informatlon) Members continued lo be generous in 2023-24 and supported CAUK with donations totalling £84,620 of which £33,000 was generously raised by the Rochester and Cobham Golf Club (with payment split across 2023-24 and 2024-251 and £19,722 (including Gift Aid) was raised by members supporting the Snowdon Climb for Cavernoma Awareness. This is a wonderful tribute to them and their belief in CAUK, for which we are very appreciative. You may choose to include additional inforrnalion, where relevant about.. the charily's principal sources of funds (including any fundraising). how expenditure has supported the key objectives of the charity,. investment policy and objectives including any ethical investment policy adopled. We are also very grateful to the followng for their generous grants received during this reporting period, alongside payments made by the University of Edinburgh in respe¢t of a National Institute for Health and Social Care (NIHR) award for research funding.. Chapman Trust Garfield Weston Albert Hunt Brendon Charitable Trust Marsh Charitable Trust Our thanks also go to our two sponsors from the pharmaceutical industry. In keeping with our policy on pharmaceutical income and commllmenl to the ABPI Code of Conduct the amounts paid are detailed below: Ovid Therapeutics - £3,400 Garfield Weston- £1,530 Section F Other optional information Going Concern The 2023 10 2024 financial year began against a backdrop of financial uncertainty. In early 2023, during the second quarter of the 2022 to 2023 financial year, it became clear that projected expenditure for the year ahead would ex¢e8d forecast income. With no confirmed grant funding at that time, the Board took the proactive step of reslructurlng the organisation to reduce costs and mainlain financial stability. Later in the year, during the final quarter of 202210 2023, we received a significant and unexpected boost from communit fundraisin While this rovided some welcom8 relief, the decision to restructure remained 13
&ssenliai.11 allowed us lo cnlor 202,110 2024 iii 8 nioro siislainablo posilion. albeit with a caulioug linanrial oiillook and tho iinforlunalc neod. folloiviiig con¥iillailoii. lo niakL) a rolo reduiid8nl al 117e slarl of 2023-24. I willi a roduiidancy p8yr¥ienl ul £1,661 lll¥ide. iii kevpiii(J ivilh slalislofy redund¢incy pay. i TlIFouglioul the 202310 2024 liiiBiiciol yLiar. o(If Cciulioiis ai)proc)cli liotr proven Lfloc.livo. We closed Ilie yoa wilh a small siirplus, suppnrled by 11)e cunliiiiiecl Iienerosily ol our c()nin)unily. re(iulcir giving, and Ilie l %iicress ol niir Siioivdoii Cliiiib lor Civeriioiiia. We Igo %eciired iii-ye•¥ir grant. helpin(J lo lijrlhor slreiigthcn oiir Iii)¥inGlcl1 pnsilioii. Thoso oLilcoii?og dpiiioiislrille Iho impact ol oiir small bul dcdiGlc led slalf team. l Binplifii'.d by Ilie viial coiilfibiilions ol our voliii)leeis. As le look dhcars lo 2024 10 202.5, WÈ feniaiii ijiindliil ol ongoing chall?ngos. While OLlf inLoine 1% e.urrently 1niilr.hing exiJeii(lilure, WL) l)eg<in Ilie linrjneilr l y08r willioul secured qranl income, and we continue lo opLJrLile willioiil Al)y niulli.yllLif !Ifrinl (.'onimilnieiils In place for 20? Jf lo 202(?. Tl)is me¢in8 we remain lieavily reliaiil r0117ni¢inily fundra54ing and indivi(lual giving, bDlli of which ar8 ht?rder lo prodicl in ali LirieRrtain econoiiiic climf?IL j Wc h&lVP Iherelore $01 a prudent budgel lor 2024 10 202J and hold resp.rves oquivaleiit lo 8-monlh.£ of i)11l1)rio(l oxpt¥ridiluri..i as a prolecliv& nieCrySu. As dl May 202J, we I18ve nialiilF]ined a biil<?nGed position, willi in¢onie Irdckiny Llosely cl(Jaiiisl 8xpondilur?. and reserves preserved. Wo ronlinij? In nioiiilor nlir posillon cirofully, nianage ri8k% rg8pon8ibly rlnd plan with reallsm. Whilo wo are I planning for Ilio worst. we remain liopi.fiil lor Ilie best, buoyed by the resilionce of ()ur Conimuiilly and Iho do(IicéJliuii of OLir slrifl, volvi)leL)rs and supporlers. Section G Declaratlon Tlio trustees declare tlial they l)ave approved the trustees, roport abovo. Signed on behalf ot tho charlty's truslg05 Di<Jitdlly slgiicid by DLinhiir.14ofltlip.r Dalt,.: ?.O2).06.11 11'.52-.01 +OI'L)O' Signalure{sl Full name(sl Mark Farr8r Healher Dunbar Position leg Secrolaryl Treasvrgr Cliair of Trustees Date
CHARITY COMMISSION FOR ENGLAND AND WALES CAVERNOMA ALLIANCE VK 1197257 Receipts and payments accounts CC16a For the perlod from 0111012023 3010912024 Section A Receipts and payments Unrestrlcted funds Restricted funds Endtswment fund8 Total fund5 Last year to tho ngarest to tho nearg$t£ to the nearest £ totho heares¢£ to the ne•rfrgt£ A1 Recelpts Donations Gran1$ SponsoY$hlp 0er Income 66,269 66.2e9 1,000 4,930 5,000 4,930 1.615 1.615 Sub totsl(Gross inGorne for AR) 87.884 9,930 77.814 A2 Asset and investment sales. (sèe table). Transfer of bank balance llom Unlncor or8led Charil 93,142 13,702 106.B44 Sub total 93.142 13,702 106,844 Total recelpts 161,Q26 23,632 184.658 A3Pa ments S8larS6s, Ni and penslon Re¢ruilmenl 22,961 383 262 579 7,619 30,579 383 621 6,221 281 4.618 3A93 3,385 3.305 6,869 1,636 499 S,240 387 389 5,642 281 1.110 Consultancy IFinan¢e. IT. Therapy) Ttslephone & broadband GerEral wnning expenses FundrBlslng Costg TravBI (Xhor Events and A¢tl¥rfll88 Other C0515 Eouipment8nd Offlcé Supp1185 Insurance Merchandise Olhei Govemance co¥ls'. Independont 8xafflinalion P8yrdl ¢o$i$ Qlh9r 3.508 3,493 2,878 1,694 3,003 1,636 499 ?.710 507 2,856 I,SJD 387 1,620 450 1,620 450 Sub total 46,666 21.912 68.577 A4 Asset and inveslmgnt purchases, Isee lablel Sub total Total paymonts 46,666 21,912 68,677 Net of recelpts/(payments) A5 Transfers between funds A6 Cash funds last year end Cash funds thls year end 114.360 530 1.720 530 116,081 113,830 2.250 116.081
Sectlon B Statemont of assets and Ilabllltlos at tho end of tho period En(lowimenl fiJnd$ io nvai¢st t fiinds 81 Ci75b litnds 86 i iJ,830 2,250 Toial cosh lunLIs UDrc5trlcto funds Reslrlcied fuiids Endowment lund5 82 Otli8r motitslory )ssOts curienl ¥)lu¢ Fiimd iC+whlGII a5$¢t bol Cosl loptloDDII B3 Investment #ssets isriDnl v#lutr Co)t loptlonnll 180 84 A$$e18 rèialned for the chorlty'3 own usè Vnr¢.'5111¢1od to whlch Amouiitduo Wliqn due lopllonall B5 Llabllltles PAYE 213 ce01wD¢Y 1.512 N0r¥wiènw1mpn1 18.641 Sionalufe Pfinl NainL 011L' ¢1 Ji)Iiillii,-Il o(L 16
Cavernoma Alllance UK 1197257 Notes NOIE S Ouikng lh&•ra thart&saGtstranYfgtteOTr lho0 ¢h8rtW(no SC04B498llo a nvw¢lOIDo 11972671.7 tv)k 03. (VOEninyt14• TQT P•rflld 0IfftYIQI4. )12111 MIIWaO23- l•rrf•Mu¢ Gelpl• 84.120 24.116 yor4fr4p Rocfjiwf{olrr1l 1,107 1J4644 ts&144 •olfflx•d S¥bt4lt•l Tol•lrnc•lpts 84.144 lJ&844 47,101 T,>94 Pi¢m19?sC051• 331 G•n•rBI FundTilgingcoJi Tra1 01hprEv4Dts 777 4214 4907 ¢quipninl4ndofAr4SupW• 2e 467 £Mh¢r ¢0 107.OtF P4yThnis rnovBDiÉrtt Subiot To141Yerlts 2N517 Tr4h•l•is tollfrornl fundi FUNDSRE¢OWUAfON CBth b4nkbA1a Itkfidvswpius rerpl 1s£nd 18h4nd atènd tsfy••r NOTE 2 1*lFÉWry2D21, m•TThn4tsiAwgpffjwnl4rydVrtoDaréllnVM? É108.844, andlN¥li$FvthThln4•thA4ofth¢oklqnOYw
Independent examiner's report on the accounts Report to the trusteesl members of r.liw.iily N.9nie Cavernoma Alliance UK On accounts for the year 9nded 30 September 2024 Charity no 1197257 Set out on pages 1 to17 Iitnieinbpr lo Include the nvI)IiErs of ad(Silion315heel I report to the charity trustees on my examination of the accounts of the above Charity for the year ended 30 September 2024. Responslbllltles and basls of report As the trustees of the Charity you are responsible for the preparation of the accounts in accordance with the requirements of the Charities and Trustee Investment (Scotland) Act 2005 (the '2005 Act,), the Charities Accounts (Scolland) Regulations 2006 (as amended), and the Charities Act 2011 ('the 2011 Act,). You are satisfied thal your charity is not required by charity law to be audited and have chosen instead to have an independent examination. I report in respect of my examination of the Charity accounts carried out under section 44 (1) { c) of the 2005 Act and section 145 of the 2011 Act. In Carrying out my examination I have followed the requirements of Regulation 11 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and all applicable Directions given by the Charity Commission under section 145(51{b) of the 2011 Act. Independent I have completed my examination. I confirm that no matters have come to examiner's statement my attention giving me cause lo believe that in any material respect.. 1. accounting records were not kept as required by section 44 {11 la) of the 2005 Act and Regulation 4 of the Charities Accounts {Scotland} Regulations 2006 (as amended) and section 130 of the 2011 Act., or 2. the accounts do not accord with those records., and 3. the accounts do not comply with the accounting requirements of Regulation 8 of the Charities Accounts (Scollandl Regulations 2006 (as amended). 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. Slgned: Date: Name: Mrs S J Hough Relevant prof8sslonal qualification{sl or body (if any): FCA Address: Edwards and Keeping, Chartered Accountants Unily Chambers, 34 High East street, Dorchester DT1 1HA