Charity registration number 1084898 SYNCOPE TRUST AND REFLLX ANOXIC SEIZURES ANNUAL REPORT AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024 SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES LEGALAND ADMINISTRATIVE INFORMATION Trustees Dr. W P Whitehou5e Mrs C L Reid E Bateson Dr M Asgari Charbty number 1084898 Princlpal address TC Group Celixir House Straford Business & Technology Park Innovation Way, Banbury Road Strarford~upon-Avon Warwick5hire CV37 7GZ Independent examiner TC Group Celixir House Stratford Business & Technology Park Innovation Way, Banbury Road Stratford-upon-Avon Warwick5hire United Kingdom CV37 7GZ SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES CONTENTS Page Trustees, report Independent examiner's report Statement of financial activities Balance sheet Notes to the fi.nancial statements 10.17 SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES TRUSTEES, REPORT FOR THE YEAR ENDED 31 DECEMBER 2024 The Trustees present their annu31 report and financial statements for the year ended 31 December 2024. The financial statements have been prepared in accordance with the accounting politles set out in notè I to the financial statements and comply with the Charity's Igoverning document], the Charities Act 2011 and "Accounting and Reporting by Charities.. Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FPS 1021" (effective l January 20191. Objeetives and artivitie5 The principal objective5 of the charity are.. To alleviate the effects of and provide support and information on, syncope and reflex 2nDxic seizures, to those in distress as a result of these sèilures. whether suffered by themselve5 or as a member of the family group. To advance the education of the medical profession and the general public on the subject of syncope and reflex anoxic seizures and its implication5 for the individual and family. To promote research into the management of syncope and reflex anoxic seizure and to publish the U￿ful results thereof and to support organisations promoting research into syncope and reflex seizures. There have been no changes to these objettives since the last annual report. Volunteers STARS utilises volunteers to a55i5t in our work. STARS Trustees review the aims, objective5 and the activities of the Charity each yèar. This report looks at what the Charity has achieved and the outcomes of its activities in the reporting period, January to December 2024. The review also helps to ensure that the Charity's aims, objectives and activities remain focused on it5 Stated purposes. There is no such thing as a simplefoint,. Syncope is a symptom not o condition,. take fainting to heart. Quotes that are synonymous with the campaign5 STARS has run over the years and which have been instrumental in raising awareness and reducing misdiagnosis. Our vision is that every patient with syncope received a corrett diagnosis and treatment. Our mi55ion is working together to improve the dlagnosis, treatment and quality of life for all tPose affetted by syncope. This year STARS celebrates its, 31st anniversary. Public benefit The Trustees have paid due regard to guidance issued by the Charity Commission in deciding what activities the Charity should undertake. The trustees confi'rm that they have complied with their duty under SeLtion 4 of the Charitie5 Art 2011 to have due regard to the Charity Commission's general guidance on public benefit. SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES TRUSTEES. REPORT (CONTINUED FOR THE YEAR ENDED 31 DECEMBER 2024 Achievements and perfomiance Significant uctivities and achievements ugainst objectives STARS continues to be the only organisation globally dedicated to providing information, support, education and awareness on unexplained loss of consciousness, syncope, reflex anoxic seizures, POTS and related conditions. We are freq¢Jently requested to present at medical meetings, provide answers to schools about how to receive a child with RAS and to provide the necessary support to p3rent5, caregivers, and familie5 to help them better support the person living with the condition. Professor John B P Stephenson STARS Founding Patron, Professor John B P stephenson sadly passed away on 17 April 2024. The Charity is immensely grateful for all the support and commttment he provided over more than 30 years. It wa5 1978 when Prof Stephenson gave a name to the unexplained loss of consciousness young chlldren were experiencing. Reflex Anoxic Seizure5 IRASI. Until then, many children were being misdiagnosed with epilepsy and prescribed what would have been unnecessary anti-epilepb"c medication. It was Prof Stephenson who then asked whether we would like to start a small 'support group to help about ten families a year,. This was March 1993, and STARS was conceived. In 1994, he presented at the very first STARS Patrent Day. attended by 106 adults and 98 children. The children, some of whom artually had an RAS éttack on the day, were looked after In five creches by qualified Kilunteers. The Professor thought this was marvellous as it helped with his research. He was already becoming internationally recognised as a pioneer in paediatric neurology and until last year had published numerous papers and books. He kept his promise he made in 1993 to support STARS; he attended every patient day for the next 20 years and more and presented at the Heart Rhythm Congress. He also made a surprise entrance at the Palace ol Westminster for STARS 25" anniversary. He was very proud of STARS and all that we have achieved. He had a vision na child would be misdiagnosed with epilepsy as long as RAS was recognised and un(krstood by the medical profession. STARS will continue to SLtpport his work and ensure it has not been in vain. SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES TRUSTEES, REPORT ICONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024 Supportiftg people living with Syncope, RAS and POTS STARS educational videos, resources, online forums and other information continue to deliver information, SUPPOrt, education, and awareness to all those affected by syncope and loss of consciousness. Webinars were produced with guidance and contributions from healthcare professionals, ensuring our material is up to date and informative for VARS audience. Over 109,000 individual views during 2024. A new RAS Discussion Guide wa5 also developed during the year. Virtual coffee mornings An opportunity to talk to patients, caregivers and family members sharing experiences, and where the STAR5 team can provide reassurance and guid3nce. DurinE 2024 STARS online meetings included topics such as- RAS- StartinE School and College held on the 04 July 2024 Llving with RAS and Syncope- STARS continued throughout 2024 with its 'Living With... series for patient video education on a range of subjetts which includes Living with RAS and Syncope. All of these are avail able online and are free to register to watch. Ralsing awareness of syncope and syncope-related conditions - World Heart Rhythm Weèk 2024 STARS collaborates and supports the World Heart Rhythm Week hosted in June each year and organised by its sister charity- Arihythmia Alliance. For WHRW2024 the theme was 'Act Smart, You Only Have One Heart'l Supporters were encouraged to rase awareness of syncope, highlighting that syncope is often overlooked, but it can be a warning sign of an underlying heart rhythm disorder. Early detection and proper diagnosis are key to preventing serious complications, and during the week STARS was able to ensure more people were aware of syncope as a potential symptom of an irregular heart rhythm, to seek medical advice if they or a loved one experienced nexplained 1055 of consciousness or have a history of Sudden cardiac death in the family, and to access STAR5 resources. We received support from thousands of individuals, organi5ations, and healthcare professional around the globe, resulting in Dur campaign reaching many millions of people. SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES TRUSTEES. REPORT (CONTINUED FOR THE YEAR ENDED 31 DECEMBER 2024 Hostln8 events for both healthcare professionalsi patients, and caregiver5. STARS Patiertts Educational Day was held as part of the annu31 Heart Rhythm Congress èt the ICC in Birmingham. The day was well attended and, sessions included presentstion5 on the variou5 concerns relating to Situational Syncope, RAS /Syncope in the young, Cardiac Syncope, Complexity of Syncope in the elderly, and TiltTable resting. There w35 a live patient story which also included the opportunity for question5 and answers. All sessions were recorded and hosted online 50 those who could not attend in person could still access thi5 informati)n. Thi5 enables access throughout the year to all patients and care givers. STARS Patients Day provides the opportunity to hear the latest developments in syncope, and treatment options, from leading medical experts from the UK, USA, Canada, Europe and Monaco. STARS Symposla for healthcare professionals w35 hosted during the Heart Rhythm Congre55. Subjects covered were.. - Syncope: Driving and flyin& Syncope in the Workplace, Syncope.. Reaplife diagnostic tests in a modern syncope unit, Syncope in the emergency department, Syncope and genetic arrhythmias and Syncope epidemiology and natural history. Presented by speakers from Europe. Canada- Monaco; UK & USA. Resources New publications for 2024 include a RAS discussion guide which is availa ble online and in paper format. With a full listing of publications also available on our website www.stars.orE.uk Fundraislng During the current etonomic situ2tr.on STARS ha5 received significantly reducèd donations however we did see many more funéraisers during 2024 through JustGiving, adding a boost to our fund5. Monthly amounts were raised through lending of books organised by a STARS Trustee, and a Dr based in Glasgow raised money for STARS by cycling from Lands, End to John O Groats. STARS Helplifte STARS has received even more enquirie5 during 2024- the demand increases year on year, and we wlll continue to meet this demand and work to reduce the struggle to find an appropriate healthcare professional to diagnose correttly and to reduce the number of misdiagnoses for people living with these conditions. STARS continues to meet demand from patients, Caregivers, families, schools, colleges and universities, work environments and care homes plus healthcare profession315 and clinics seeking information. education, support and greater awareness. We plan for future years to be as successful as the previoL¢S 31 years and live in hope that a5 awareness increases $0 too will detection and diagnosis leading to better outcomes for all those impacted by these conditions. We must also focus on ensuring no matter where someone lives, they can access a service near to them. Currently with so few dedicated clinic5 It is a challenge for so many to find an expert Itxally. Communicating our work Effective communications are key to sharing the work that the Charity undertakes. RaisinB awareness of our website resources, and our use of social media are vital to gr¢wing patier)t Èngagement and awareness of syncope and unexplained loss of consclousness. SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES TRUSTEES. REPORT (CONTINUED} FOR THE YEAR ENDED 31 DECEMBER 2024 Flnancial review The Charity has seen a decrease in income from £121,559 in 2023 to £106,975 in 2024. This 15 due to a decrease in donation income from £17.239 in 2023 to £14,068 in 2024 and a decrease in grant income from £103,667 in 2023 to £89,674 in 2024. Expenditure decreased from £79,302 in 2023 to £76,145 in 2024. The Charity's total funds increased by £30,830 to £636,150 in the financial year. The Trustee5 have a strategic and operational plan in place to ensure stability and growth, Reserve5 policy The Trustees have a policy of maintaining a level of unrestricted reserves which should ensure that there are adequate funds to meet anticipated future liabilities. In practice the Trustees consider that holding reserves equivalent to a minimum of 3 month5, core costs. excluding funds tied up in fixed assets should provide sufficient funds to respond to unexpected adverse changes in the Charity's funding or activities. This equates to a minimum of £15,000 based on the current leve15 of activity. The Trustees consider that the current level of unrestricted reserves is therefore adequate. Structure, governance and management Governing document The Charity is constituted under a Charity Commission Scheme and is registered Charity number 1084898. The Charity's activities are governed by a Declaration of Trust adopted on 24 November 2000. The Charity was granted charitable status on 6 February 2001. The Trustees who served during the year and up to the date of signature of the financial statement5 were.. Dr. W P Whitehouse Mrs CL Reid E Bateson Dr M Asgari Recruitment and appointment of trustee5 The management of the Charity is responsible of the Trustee5 who are elected and ctiopted under the term5 of the Trust deed. There must at all times be a minimum Df three Trustees in office. The first Trustees are entitled to hold office for life. New frustees are appointed by a re501ution passed by the TrL¢Stees in special meeting. Orgt7nisationol Structure The Trustees delegate the day to day management of the Charity to the Chief Executive and her support 5t3ff. Induction and training of trustees New Trustee5 undergo an orientation process to brief them on their legal obligations under Charity law the Charity's governing documents, the committee and decision making process, the business plan and reC￿t financial performance of the Charity. During the induction process they meet key employees and other trustees. Trustees are encouraged to attend appropriate external and internal training events which will asslst them in carrying out their role. SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES TRUSTEES, REPORT (CONTINUED FOR THE YEAR ENDED 31 DECEMBER 2024 Ackn