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CHAIR AND CHIEF EXECUTIVE WELCOME Since our formal launch as the Epilepsy Research Institute in October 2023, we have embarked on a transformative journey. Born from an unprecedented collaboration across the whole epilepsy community, our goal has been clear from the start: to radically advance research into epilepsy by uniting a research landscape that has for too long been fragmented. Our five year Strategic Plan for 2025-2030 outlines our ambitious goal to secure £110 million for epilepsy research by 2030. We are progressing this through the partnerships networks we have established with key stakeholders across the health, research and academic ecosystem. The Trustees of the Institute are not only our governing body, but key partners in the delivery of our bold ambitions. There are thirteen current Trustees reflecting lived experience of epilepsy, research and clinical academics, and our partner charity organisations. Alongside our senior leadership team, their expertise and guidance are vital in steering the strategic direction of the organisation, ensuring we have strong governed structures, and that we are financially stable and compliant with all aspects of charity and company regulatory requirements. As the Institute grows and develops, so are our governance needs evolving. Not only are we working to ensure our Trustee Board is representative across a diverse population, we are adapting its membership to include expert guidance in areas of underrepresentation. This round of Trustee recruitment sees us looking to add individuals from an IT technology background and/or those with extensive business acumen at a senior leadership level. It’s an incredibly exciting time to be joining the Institute at a number of levels. We have recently funded new research projects to a total of £1.4m through our annual research grant round. Our robust financial projections and systems support our five-year strategy, and we continue to secure and leverage funding from a variety of commercial and non-commercial sources. Our legacy pipeline is healthy, and our fundraising strategy draws from a variety of streams including major donors and event fundraising. We are poised to move into our new offices shortly but will continue to be based in London where we will hold Trustee meetings and deliver research events. We do hope our recruitment activity is of interest and that you consider joining us as a Trustee. If successful, in return we will offer you a place around a Board table amongst expert, forward thinking, passionate and challenging peers; and support you with any development needs as a Trustee new to the organisation. We look forward to hearing from you. Matthew Walker, Chair Rosemarie Pardington, Chief Executive RADICALLY ADVANCING RESEARCH INTO EPILEPSY THE EPILEPSY RESEARCH INSTITUTE The Epilepsy Research Institute’s mission is to radically advance research for the one in 100 people living with the condition. By increasing understanding and accelerating innovations, we are working towards our vision of a life free from epilepsy. People affected by epilepsy shape everything we do, from setting research priorities to study design and impact measurement. We continue to build a powerful movement for change – unlocking research funding, raising awareness and forging partnerships across research, healthcare, industry and the epilepsy community. Together, we’re working to give epilepsy research the attention and investment it deserves. Our strong belief that a life free from epilepsy is possible, but only through research, remains our focus. Our strategic priorities are as follows: • Convene, connect and capacity build the epilepsy research ecosystem. • Drive strategic investment in epilepsy research. • • Develop research partnerships and collaborations. • Advocate and action the research priorities of people affected by epilepsy. Fund research into epilepsy and associated conditions. We are driven by our values in all areas of our work and the way in which it is governed: Passion We are passionate, driven and committed by our focus to ‘radically advance research into epilepsy’. Collaboration We appreciate that is only by working together we will achieve our vision of ‘a life free of epilepsy’. Our teamwork and partnerships reflect our integrity, professional approach and trustworthiness. Rigor We expect a high standard of excellence, supporting the best science with our systematic and rigorous approach to all of our work. Innovation We are courageous and ambitious to enable ground-breaking research and welcome innovative and creative ideas. Inclusion We are respectful of all the teams of people working with, and for, us including people living with epilepsy, researchers and our supporters, and value their views and input. We serve as the central hub for the epilepsy research community. Guided by the epilepsy community’s priorities, our research model is built on six key themes, led by expert working groups of scientists, clinicians and emerging talent: • Neurodevelopment • Advanced therapeutics and disease modification • Mortality, morbidity and risk • Reproduction and hormones RADICALLY ADVANCING RESEARCH INTO EPILEPSY • Capacity building • Enabling technologies These research themes are driving a programme to secure large-scale research investment which they have articulated in our roadmap for research into epilepsy. Having built an infrastructure that supports research, encourages shared learning and nurtures talent, we aim to harness enabling technologies, ensure research and clinical data is widely available to researchers, foster collaborations and attract early career researchers. We have a strong focus on funding and supporting early career researchers, which we believe will make a huge difference to the epilepsy community. The significant steps we have taken are strengthening the research infrastructure and helping to develop the research ecosystem. Over the past 24 months, we have invested over £3 million in research through our research grant round supporting both early career and established researchers through a combination of Fellowship and project awards. Our Shape Network is the UK’s largest group of people affected by epilepsy who are interested in research. We share opportunities for people with epilepsy, their family members and carers to get involved in all aspects of research. We also ensure members of the network are involved in the work undertaken by our six themes and are consulted as part of our research funding round. Additionally, our network is consulted by a variety of external researchers and organisations in the design, development and conduct of research work. More information about the Institute and access to our publications can be found on our website. RADICALLY ADVANCING RESEARCH INTO EPILEPSY TRUSTEE RECRUITMENT SPRING 2026 Candidate brief We are looking to appoint two Trustees with experience and expertise in either of the following areas: IT/ digital technology As technology continues to evolve, we are eager to explore ways we can refine and evolve our current processes and find innovative ways to shape the research we support. Commercial leadership There is scope to play a key role in supporting the design and future digital strategy for our organisation and advise on IT management. We would welcome input from someone who has developed their career within the technology sector and directed digital implementation or IT governance. Transformative change is at the heart of our five-year strategy. This requires vision and drive in steering our organisation forward in terms of its strategic goals and the direction of its operations. Working with commercial partners and working commercially will be key to achieving our ambitions. Hence, the Trustees recognise the Institute would benefit enormously from a senior business leader to provide additional challenge, guidance and support innovation across the organisation. We are looking for an individual who has extensive commercial experience at a senior level and has led transformative growth within an organisation. Additionally, we would welcome applications from: • people who have a connection with epilepsy or epilepsy research either through lived or professional experience. • people who are under the age of 35 or from ethnically diverse backgrounds, who are currently under-represented on our Board. We are committed to inclusive governance and encourage candidates with a wide range of life experiences to apply. As we will also look to appoint either one or both successful applicants to our Finance and Audit Subcommittee, any further experience in finance, risk or governance would also be advantageous. How to apply Candidates should send: Their CV • • An expression of interest of no longer than one (A4) page covering: RADICALLY ADVANCING RESEARCH INTO EPILEPSY o Their motivation for becoming an Institute Trustee. o How they fulfil our candidate needs as specified in the brief above and the person specification below. Applications should be sent by email to Alison Cooper, Director of Governance at a.cooper@epilepsy-institute.org.uk Emails should have the following subject header: TRUSTEE RECRUITMENT SPRING 2026 Applications should be received by Monday 11 May 2026, at 17:00. Timeline • Informal enquiries will be welcomed up to Thursday 7 May 2026. These should be directed via: a.cooper@epilepsy-institute.org.uk • Deadline for applications Monday 11 May 2026 at 17:00. • Shortlisted candidates will be notified by Friday 15 May 2026. • In person interviews to be held in central London on Friday 22 May 2026. • Preferred candidates will be notified of decisions by Friday 29 May 2026. • Preferred candidates will be subject to election at the Board meeting on Friday 3 July 2026. Other significant dates for successful candidates (All currently in-person events in central London) Friday 3 July 2026 12:30 – 17:00 Board meeting Thursday 10 September 2026 13:00 - 15:30 Finance and audit subcommittee. Thursday 24 September 2026 12:30 – 17:00 AGM and Board meeting Thursday 19 November 2026 13:00 - 15:30 Finance and audit subcommittee. Thursday 10 December 2026 09:30 – 12:30 Board development session. Thursday 10 December 2026 12:30 – 17:00 Board meeting RADICALLY ADVANCING RESEARCH INTO EPILEPSY ROLE DESCRIPTION AND PERSON SPECIFICATION 1. Terms of Appointment • Trustees are appointed for a fixed term of three years in line with the Institute’s Articles of Association. This can be renewed up to a maximum of three further years. • As well as being registered as a Trustee with the Charity Commission, the Trustee will be appointed as a statutory director of the company registered with Companies House. • • • The role is unpaid; reasonable expenses may be reimbursed. Trustees must comply with conflict-of-interest, confidentiality requirements and relevant Institute policies. Trustees are expected to make all reasonable arrangements to attend the four Board meetings per year. Any Trustee missing two or more Board meetings may be asked to step down by the Chair. 2. Purpose of the Role Trustees are jointly and individually responsible for the effective governance, strategic direction, and long- term sustainability of the Epilepsy Research Institute. Jointly Trustees have a collective responsibility to provide effective oversight of the charity’s work and to work in close partnership with the CEO to ensure the organisation delivers its charitable purposes. This includes setting the strategic direction, agreeing priorities, and ensuring appropriate governance, financial controls, and risk management are in place, while delegating day-to-day operations to the CEO and their senior management team. Trustees should support, challenge, and hold the CEO to account through regular communication, maintaining a constructive and respectful relationship that balances support with independent scrutiny and complies with Charity Commission guidance and the charity’s governing document. Trustees come from a wide range of backgrounds to ensure a full range of skills and diversity on the Board. 3. Key Responsibilities 3.1 Governance and Strategic Leadership • Act in the best interests of the charity, its beneficiaries, and the wider epilepsy community. • • Contribute to the development, oversight, and review of the charity’s strategic plan. Ensure the charity’s activities align with its charitable objectives and Articles of Association. • Participate fully in board meetings, exercising sound, independent judgement. 3.2 Business and Organisational Oversight • Apply business insight to support sustainable growth, efficiency, and resilience. RADICALLY ADVANCING RESEARCH INTO EPILEPSY • Provide strategic challenge and guidance on organisational performance, commercial opportunities, and resource allocation. • Support the development of robust governance frameworks, policies, and performance metrics. 3.3 Digital, Data, and IT Oversight (for IT Specialists) • Provide strategic oversight of the charity’s IT and digital infrastructure. • Advise on IT provision, digital transformation, cybersecurity, data protection, and systems integration. • Participate in service reviews and tender exercises. • Working with Institute senior management and indirectly with our IT service providers; ensure IT- related risks are identified, managed, and regularly reviewed. 3.4 Financial Oversight and Risk Management • Ensure charitable funds are used responsibly and in pursuit of the Institute’s mission. • Review budgets, financial reports, and annual accounts. • • Ensure appropriate systems for financial control, risk management, and compliance are in place. Contribute to oversight of funding streams, grants, and research expenditure. 3.5 Legal, Regulatory, and Ethical Compliance • Ensure compliance with charity law, data protection, research governance, and relevant regulations. • Uphold high standards of ethics, integrity, and transparency, particularly in relation to medical research. • Identify and manage conflicts of interest appropriately. 3.6 People, Culture, and Research Integrity • Support and hold the senior leadership team to account. • Promote a culture of collaboration, inclusion, and excellence. • Ensure strong governance of research quality, impact, and ethical standards. 3.7 Advocacy and Ambassadorship • Act as an ambassador for the Epilepsy Research Institute and its mission. • Support engagement with partners, funders, researchers, and the wider community. • Assist with fundraising, profile-raising, and strategic relationships where appropriate. 4. Time Commitment • Attendance at approximately four in person board meetings per year, supplemented by two development sessions. In total this will equate to five half days and one full day per year. RADICALLY ADVANCING RESEARCH INTO EPILEPSY • Participation in sub-committees or working groups relevant to expertise. These may mean a further 3- 5 meetings a year. • Occasional involvement in strategic planning days, research or supporter events, or stakeholder meetings. 5. Person Specification 5.1 Essential • • • Experience at senior level in business, technology, digital transformation, or data governance. (For Spring 2026 recruitment). Commitment to improving outcomes for people affected by epilepsy. Strong business acumen and/or significant IT or digital leadership experience. • Ability to think strategically and contribute to complex decision-making. • Willingness to uphold and learn Trustee legal duties and responsibilities. • • Excellent communication and interpersonal skills. Integrity, independence, and sound judgement. • Understanding of charity governance. 5.2 Desirable • • Lived experience of epilepsy or connection to the epilepsy community. Experience of operating within a regulated or research-led environment. • Previous Trustee or non-executive director experience. RADICALLY ADVANCING RESEARCH INTO EPILEPSY