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Trustees’ Report and Financial Statements for the year ended 31st March 2019

LIFE CHANGING LIFE SAVING RESEARCH

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A LIFE FREE FROM EPILEPSY IS POSSIBLE. DRIVING AND ENABLING RESEARCH IS THE WAY TO ACHIEVE THIS.


£1m

INVESTED IN RESEARCH THIS YEAR

CONTENTS Reference and administrative details

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Trustees’ report

6

Objectives and activities

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Report of the independent auditors to the trustees of Epilepsy Research UK

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Statement of Financial Activities (including the Income & Expenditure Account)

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Balance Sheet at 31st March 2019

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Statement of Cash Flows

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Thank you 36


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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Reference and administrative details Directors and Trustees

The Directors of the charitable company and its trustees for the purposes of charity law serving during the year, and since the year end, were: Professor Matthew Walker MA MB BChir FRCP PhD (Chair) Mr Barrie Akin LLB FCA The Rt Hon David Cameron Professor Bruno Frenguelli BSc PhD Ms Mary Gavigan BBS MA FCA Dr Yvonne Hart MA MD FRCP (retired Sept 2018) Dr John Hirst CBE BA FCA MCT CCBIM DSc Mr Simon Lanyon Professor Mark Rees BSc(Hons) PhD MRCPath (resigned Dec 2018) Professor Mark Richardson MA BMBCh MRCP PhD CCST FRCP Mr Harry Salmon BA Professor Stephanie Schorge BSc, Phd, SFHEA (appointed Dec 2018) Dr Graeme Sills BSc PhD (retired Sept 2018) Ms Judith Spencer-Gregson FCA MSc Dr Rhys Thomas BSc, MBChB, MRCP, MSc, PhD (appointed Dec 2018)

President

Professor Helen Cross MB ChB PhD FRCP(UK) FRCPCH

Chief Executive

Angela Geer - Interim (Dec 2017 to April 2018) Maxine Smeaton (appointed Sept 2018)

Independent auditors

F A Magee & Company, Chartered Accountants and Statutory Auditors, Wimborne House, 4-6 Pump Lane, Hayes, UB3 3NB

Bankers

CAF Bank Ltd, PO Box 289, Kings Hill, West Malling, Kent, ME19 4TA Lloyds Bank, 308-312 Chiswick High Road, London, W4 1NS

Solicitors & Company Secretary

A J Lutley, (previously Solscan Limited) Springfield, Rookery Hill, Ashtead Park, Ashtead, Surrey, KT21 1HY

Registered & main office

Charity number: 1100394 Company number: 4873718 From 1st March 2019: CAN Mezzanine, 7-14 Great Dover Street, London SE1 4YR T: 020 3096 7887 E: info@eruk.org.uk


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

“I know only too well how important the research funds from Epilepsy Research UK are to help start programmes of research that lead to major breakthroughs in epilepsy treatments.” Professor Matthew Walker Chair, Epilepsy Research UK

EPILEPSY IS ONE OF THE MOST COMMON NEUROLOGICAL CONDITIONS

1 in

103

PEOPLE LIVE WITH EPILEPSY

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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Trustees’ report for the year ended 31 March 2019 The directors hereafter referred to as the trustees are pleased to present their annual directors’ report together with the financial statements of the charity for the year ending 31 March 2019 which are also prepared to meet the requirements for a directors’ report and accounts for Companies Act purposes. The financial statements comply with the Charities Act 2011, the Companies Act 2006, the Memorandum and Articles of Association, 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 (FRS 102) (effective 1 January 2015). During the first part of the financial year, the trustees assumed operational control of the charity whilst recruiting a permanent CEO. In September, our newly appointed CEO, Maxine Smeaton, joined us to lead the development of a strategy that will realise the ambitions of the board and supporters. In October, consultation began with a range of external stakeholders including people living with epilepsy, long-term supporters, community fundraisers, funding partners and clinical and scientific researchers. In November, a strategy workshop took place with all members of the trustee board, Scientific Advisory Committee (SAC), our president, staff and supporters. The output from the consultation, workshops and board discussions was a realistic but ambitious vision statement, a purpose statement that accurately describes our day-to-day activities and a set of values that underpin our approach. Following this consultation, three strategic priorities and associated enablers were identified and agreed by the Board and the ERUK team which support the delivery of the charitable objectives. A summary of this work is detailed below:

OUR VISION:

OUR PURPOSE:

OUR VALUES:

A LIFE FREE FROM EPILEPSY

DRIVING AND ENABLING LIFE CHANGING LIFE SAVING RESEARCH INTO EPILEPSY

IMPACTFUL RIGOROUS INNOVATIVE COLLABORATIVE


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

PRIORITY

1

PRIORITY

2

PRIORITY

3

Promote, encourage, fund research into the causes, and diagnosis of epilepsy and clinical management of people with epilepsy and associated conditions. Led by our Scientific Advisory Committee, we will seek to increase our funding of high quality, independent, investigator-led basic and clinical scientific research. We will also look to collaborate with third sector and industry partners to develop and deliver strategic research initiatives.

Develop the next generation of epilepsy researchers and capacity build the epilepsy research environment. We will further develop our International Expert Workshops bringing global epilepsy research leaders together to define research priorities that address specific issues affecting people with epilepsy. We will fund and co-fund research fellowships to build the next generation of epilepsy researchers and enable the best people to transition from research independence to leadership. We will grow, connect and capacity build our research network of funded and engaged epilepsy researchers.

Accelerate innovations for people with epilepsy by supporting research that will influence clinical practice and health policy. We will seek to capacity-build the innovation pipeline by developing a research database of people with epilepsy who are willing to share their data to enable clinical and scientific advances. We will seek to unite epilepsy charities in a common purpose to gather evidence and information that will support advances in clinical care and influence policy and practice.

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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Enabling strategy

Brand reputation - trusted experts, evidenceIn order to drive the delivery of the strategic priorities, based communications and voice, listening and we will require a combination of staff, supporters and approachable. We will provide clarity about our niche in the epilepsy charity sector as the only Association volunteers to help achieve our ambitions. The board of Medical Research Charities (AMRC) member charity recognises the loyalty, commitment and talent of the ERUK staff team, the supporters who raise awareness solely dedicated to driving and enabling life changing and life saving research into epilepsy in academic of our work and generously provide our only source institutions throughout the UK. We will evidence our of income, and the scientists and clinicians who impact and showcase the UK’s leading scientists and volunteer their time and expertise to the Scientific Advisory Committee in order to safeguard the integrity clinicians on our advisory committees who through their expertise underpin the integrity of our mission. of our grant making capability.

Our enabling strategy will focus on four key areas: Connected supporters - an engaged community working together to achieve a shared vision for people with epilepsy. We will provide opportunities for people with epilepsy to engage with research and share vital information to influence research development. We will develop a sustainable business model and an associated programme of fundraising activities and campaigns. We will seek funding partnerships in order to secure strategic long-term investment. Good governance - strategic leadership, robust operational and financial management, effective systems and processes. We will further develop our board to support a dynamic approach to innovation and collaboration. We will invest in technology, systems and processes that support digital engagement to futureproof the organisation and enable future growth. Excellence in grant making - rigorous grant management, supporting the most promising professionals and projects. We will proactively promote our grant programme across UK academic institutions and industry in order to secure the highest quality applications, grow the epilepsy research network and capacity by bringing the research community together to collaborate and disseminate learnings.

2019/20 – Aspiration to Action A five-year implementation plan is under development, a refreshed brand that reflects our ambition is soon to be released and a fundraising campaign is planned to increase investment in this chronically underfunded area of research. We are acutely aware that it is only through the immense generosity and commitment of our supporters that we are in a position to take forward plans to drive and enable a national programme of life changing, life saving research. Our sincere thanks go to everyone involved. As a Board we very much look forward to contributing a broad range of skills and knowledge to help develop the strategic direction of the charity and take this plan from aspiration to action.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

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Objectives and activities for the public benefit The trustees have complied with their duty according to Section 17(5) of the Charities Act 2011. To achieve this, the Charity reports that it offers the following public benefit: The objects of the charity are:

are then invited to submit a full proposal. Each is reviewed by the SAC and one to three independent • to promote, encourage and finance research into external peer-review referees. Candidates for the epilepsy and associated conditions and their Fellowship are also interviewed by SAC members. On underlying causes; the basis of the full applications, referees’ comments • to promote and improve the treatment, care and interview (if appropriate), the SAC chooses which and welfare of persons affected by epilepsy and projects to recommend to the trustees. The criteria associated conditions; and used by the SAC to determine which projects are • to advance the general education and understanding most worthy of funding include clarity of hypothesis, of the public concerning the nature and causes originality, practicality, quality, value for money, of epilepsy and associated conditions and the researcher experience, clarity of lay summary and treatment thereof. ethical approval (if appropriate). The SAC, in its grantIn shaping our objectives for the year and planning our awarding capacity, abides by the code of good practice set out by the Association of Medical Research activities, the trustees have considered the Charity Charities of which Epilepsy Research UK is a member. Commission’s guidance on public benefit, including the guidance ‘public benefit: running a charity (PB2)’. Epilepsy Research UK provides fellowships in the The objectives set out in the charity’s business plan region of £250,000 to encourage and enable scientists for the year are shaped by these aims with a view to start a career in epilepsy research, project grants to funding an increasing programme of research, of £200,000 and pilot grants of £30,000. Applicants encouraging collaboration amongst researchers and for all grants must be graduates in medicine or one of raising awareness of the need for more funding for the sciences allied to medicine. They must be resident epilepsy research. in the United Kingdom and affiliated to an academic institution in the United Kingdom.

Objective 1: To support the best possible research within the funds available

Epilepsy Research UK aims to invest in research into all areas of epilepsy including research leading to improvements in the accuracy of diagnosis and research into improving the treatment and quality of life of the patient. The Grant Round is advertised in the specialist scientific press, via Epilepsy Research UK’s website and Epilepsy Research UK’s distribution list, the Research Register. Preliminary applications are considered by Epilepsy Research UK’s Scientific Advisory Committee (SAC) and short-listed applicants

All grant holders are required to supply Epilepsy Research UK with an annual progress report (within one month of the anniversary of the project start date) and a final report (within four months of the project’s end). These reports are reviewed by the SAC to ensure that continuation of funding is in Epilepsy Research UK’s interests.


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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Research grants in 2019

This year we were pleased to be able to award 10 research grants totalling £1,024,525 each one looking at a particular aspect of the cause, prevention or treatment of epilepsy.

Grant number 1: Dr Vincent Magloire - £247,133

A 36-month fellowship has been awarded to Dr Vincent Magloire under supervisor Professor Dimitri Kullmann at University College, London. Dr Magloire is currently a research associate working on an ERUK project grant in the Kullmann lab. The fellowship will investigate neurogliaform interneurons, as a promising inhibitory target to stop focal and generalised seizures. Neurogliaform cells have the ability to exert powerful, widespread, and long-lasting inhibitory control over brain excitation. Dr Magloire said, “If successful, this study will be an important stepping-stone towards alternative treatments for people with epilepsy - especially the 30% whose seizures are currently uncontrolled.”

Grant number 2: Professor Markus Reuber - £75,203

A 36-month project grant has been awarded to Professor Markus Reuber and colleagues at the University of Sheffield. Transient loss of consciousness (TLOC) is one of the most common reasons why people access emergency care services. Epilepsy is one of the common causes of TLOC, however 20% of individuals receive erroneous diagnoses. This grant will support a PhD programme to validate a computer-presented and analysed symptom questionnaire and explore the diagnostic contribution of a fully automated process for capturing and analysing patients’ conversations with a digital doctor. According to Prof Reuber, “The time has come to use advances in computer technology and automatic speech analysis to support the decision-making process with artificial intelligence systems.”

Grant number 3: Professor Nicholas Dale - £172,218

A 24-month project grant has been awarded to Professor Dale and colleagues at the University of Warwick to investigate microglia – a cell type implicated in the suspected mechanisms underlying SUDEP. It is not currently known whether these cells cause or prevent SUDEP, and so this project aims to establish the importance of microglia in regulating cardiorespiratory function and seizures in epilepsy. Prof Dale believes that this study may lead to therapeutic strategies to prevent SUDEP in the future.

Grant number 4: Dr Sjoerd Vos - £163,573

A 36-month project grant has been awarded to Dr Sjoerd Vos and colleagues at UCL and Newcastle University to use MRI scanning to predict and reduce language deficits resulting from temporal lobe epilepsy surgery. The research team hopes that this will reduce possible decreases in language capabilities as a result of surgery, improving post-surgical quality of life.

Grant number 5: Dr Beate Diehl - £162,793

A 24-month project has been awarded to Dr Beate Diehl and colleagues at University College London, along with their team of international collaborators. This project will use brain scans to investigate how parts of the brain controlling breathing and the heart will communicate with each other in people who later died of SUDEP, compared to those of living people with epilepsy, and how sleep may affect this communication. The project will use specialised MRI scans already acquired in six different hospitals in the UK, France, Switzerland, Australia, and Canada. According to Dr Diehl, “Understanding how these parts of the brain communicate with each other will be a vital step in advancing SUDEP prevention.”


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Grant number 6: Dr Umesh Vivekananda - £83,958

A 36-month project grant has been awarded to Dr Vivekananda and colleagues at University College London which aims to introduce a new magnetoencaphalography (MEG) technique that uses sensors worn within a helmet – called portable MEG. This new technology will significantly reduce costs and provide unparalleled information on the type of abnormal electrical activity associated with the epilepsy and where in the brain this emanates from. According to Dr Vivekananda, “Portable MEG has the potential to revolutionise how neurophysiology is performed in epilepsy and translate portable MEG into a widely used clinical tool”.

Grant number 7: Dr Diana Cash - £29,903

A 12-month pilot grant has been awarded to Dr Diana Cash and colleagues at King’s College London and the University of Exeter which aims to develop a way to test computer-based models of epilepsy surgery. This work will then inform which epilepsy network components should be removed in surgery to treat epilepsy, using Multimodal Ictogenic Network Mapping. The research team’s vision is, “to establish a translational platform to develop, test, and optimise non-invasive multimodal mapping of seizuregenerating networks in the brain, and to develop minimally-destructive techniques to disrupt them.”

Grant number 8: Dr Marian Galovic - £29,744

A 15-month pilot grant has been awarded to Dr Marian Galovic and Dr Matthias Koepp at University College London to investigate whether hippocampal shape analysis has potential as a novel practical predictive biomarker of surgical outcome. The hippocampus is most frequently affected in people with epilepsy;

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however, it is typically evaluated by volume, and not shape. This study will use a large dataset and artificial intelligence (AI) to predict the likelihood of becoming seizure-free or of having memory problems after surgery. The researchers will make the AI-pipeline freely available online and hope that it will be available to use within one year.

Grant number 9: Dr Hanna Kovshoff - £30,000

A 24-month pilot grant has been awarded to Dr Hanna Kovshoff and colleagues at the University of Southampton which aims to document the lived experience of children with epilepsy, their parents, and siblings as they embark on the epilepsy surgery pathway. This research will ensure that health and education services can provide appropriate support for patients and their families through this process, as well as providing leaflets for children, families, and professionals in health and education. The research team add that, “educational experiences and related support are important, but often neglected, considerations in the context of medical research.”

Grant number 10: Professor Vincenzo Crunelli - £30,000

A 24-month pilot grant has been awarded to Professor Vincenzo Crunelli and colleagues at Cardiff University to investigate the role of thalamic GABA in childhood and juvenile absence epilepsy. The team will use a high strength brain scanner to compare the concentration of GABA in the thalamus and cortex between normal children/teenagers and children/ teenagers with absence seizures. The results of this study will inform the development of novel drugs that could potentially control seizures and their associated cognitive deficits.


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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Summary of research grants awarded PRINCIPAL INVESTIGATOR, INSTITUTION

TITLE

AMOUNT

Dr Vincent Magloire Institute of Neurology

Neurogliaform interneurons, a promising inhibitory target to stop focal and generalised seizures

£247,133

Prof Markus Reuber University of Sheffield

Improving diagnostic procedures for epilepsy through automated recording and analysis of patients’ history

£75,203

Prof Nicholas Dale University of Warwick

Do microglia prevent seizure-induced cardiorespiratory dysfunction in freely behaving mice?

£172,218

Dr Sjoerd Vos University College London

Predicting and reducing language deficits from temporal lobe epilepsy surgery

£163,573

Dr Beate Diehl Institute of Neurology

Identifying SUDEP risk: sleep-wakefulness modulation of central autonomic and respiratory networks

£162,793

Dr Umesh Vivekananda Institute of Neurology

Predicting which brain region to treat: Multimodal Ictogenic Network Mapping (MINM)

£83,958

Dr Diana Cash King’s College London

Alteration of perineuronal net in absence epilepsy

£29,903

Dr Marian Galovic Chalfont Centre for Epilepsy

Hippocampal shape analysis: a novel practical predictive biomarker of surgical outcome?

£29,744

Dr Hanna Kovshoff University of Southampton

Epilepsy surgery pathway: the lived experience of children with epilepsy, their parents, and siblings

£30,000

Prof Vincenzo Crunelli Cardiff University

Thalamic GABA in childhood and juvenile absence epilepsy

£30,000

Total grants awarded

£1,024,525

In addition, we are currently funding 32 other projects, approved in prior years, at institutes around the UK, examples of which include investigating new methods of diagnosing and treating epilepsy such as studying ways to predict seizure occurrence through wearable technologies, using imaging networks to predict medication seizure control, preventing SUDEP or exploring ways to improve the management of people with status epilepticus in intensive care.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Research value and impact

The Association of Medical Research Charities (AMRC) membership is the hallmark of quality research funding. It means that we fund high-quality, peerreviewed work and that our research procedures are audited every five years in order to check that they meet the gold standard. For universities, government and other funding bodies, AMRC membership is a recognised indicator of quality, and it qualifies our grants for support from the government’s Charity Research Support Fund, which entitles universities to at least a 20% increase on our funding. As AMRC members, we are also provided with access to training alongside other research charities to share ideas and ensure we are operating best practice processes and procedures. The research we fund will ultimately be of benefit to people with epilepsy as our understanding of the condition grows. Often the research we fund is the first step in a long journey to developing new treatments. One way we gauge the success of these early stage projects is by assessing the level of funding they subsequently secure from other funders to progress the work. We closely monitor the impact of our grants to ensure that donations support research of the highest quality. We do this via a reporting platform called ‘Researchfish’, which is used by a growing network of funding bodies and universities in the UK and Europe. Researchfish enables our researchers to tell us, in detail, about where their findings have been disseminated and the impact they might have on future epilepsy research, scientists’ careers and, most importantly, people with epilepsy.

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Between 2013-2017 we invested £3.47 million on research grants which have since leveraged a further £17.9 million in follow-on funding from other sources. Therefore, every pound invested by Epilepsy Research UK has generated a further £5.16 for epilepsy research. Another indicator of the quality of the research we fund is the number of publications that arise from the work. A total of 158 journal publications have resulted from ERUK grants during the 2009 – 2018 period, 27 of which were in high impact journals such as Brain, Nature or Journal of Physiology. Further evidence of the quality of the work we fund is the number of citations these publications have achieved (i.e. the number of times the publications have been referred to by other researchers in their own work). In this case our 158 publications have been cited over 3000 times.

£3.47m

ON RESEARCH GRANTS and these have leveraged a further £17.9 million


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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Objective 2: To organise scientific workshops Objective 3: To raise the profile of Epilepsy in order to advance current thinking and Research UK and the need for epilepsy practice research In March 2019, 54 world-leading experts in epilepsy and neurodevelopmental disorder research were brought together by ERUK for our 12th International Expert Workshop at St Anne’s College, Oxford. There were 36 institutions represented across 11 countries including the USA and Australia. Of the 54 participants, 23 gave talks, with the remaining participants joining in the 6 chaired discussions at the end of each session. Topics covered included the relationships between epilepsy and neurodevelopmental disorders, the molecular mechanism underpinning the two conditions, experimental models, and potential therapeutic strategies. The workshop output will be a special issue of the European Journal of Paediatric Neurology due to be published in November. It is anticipated that this output will result in a number of key research priorities with tangible outcomes. Workshop attendees will be followed up 6 months after the workshop, then on an annual basis to assess the impact of the workshop. A post-meeting survey was conducted, yielding positive responses in terms of willingness to contribute to the publication, the content of the programme, knowledge gained and connections made over the three days.

It is essential that anyone engaging with Epilepsy Research UK understands that our role is to provide information about the research we undertake and the impact for people living with epilepsy. In a world dominated by the media, we will ensure our communications are evidence based and provide people with a source of credible information. A comprehensive programme of activities to involve people with epilepsy in our research activities in order to understand priority research themes is under development. We will seek new ways to engage and empower our community through research surveys, workshops, data and feedback. Work is underway with digital specialists to develop a sustainable and user-friendly interface to achieve this.

Objective 4: To collaborate with other organisations to advance epilepsy research

Our new CEO has been pro-active in establishing and developing collaborative relationships with other epilepsy-related charities and associated condition medical research charities. We are engaged members and contribute to policy consultations led by the AMRC and Neurological Alliance as well taking an active role in the All-Party Parliamentary Group on Epilepsy. We have worked closely with SUDEP Action to support a judicial review relating to plans for a Serious Shortage Protocol and worked closely with key campaigners and influencers regarding Valproate.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

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Trend in legacy income over the last 15 years 2,000,000 1,800,000 1,600,000 1,400,000 1,200,000 1,000,000 8000,000 6000,000 4000,000 2000,000 0 2003 2004

2004 2005

2005 2006

2006 2007 2007 2008

2008 2009 2010 2009 2010 2011

Fundraising performance in 2018-19

The overall incoming resources from fundraising and trading activities during 2018-19 were £2,571,640 an increase of 20% compared to the previous year. Legacy income in the year was £1,784,801. 2017/18 saw an extraordinary level of legacy income compared to the previous years and 2018/2019 has also provided an exceptional level of legacy income. The table above demonstrates the trend in legacy income over the last 15 years. Given the highly unpredictable nature of legacies and two highly exceptional years, the Board has taken the decision to phase the research grant allocations to ensure we have a secure grant round for the next few years. This funding has also enabled the board to consider investment in a strategic opportunity. Income from charitable trusts was £17,488, lower than last year due to a lack of dedicated staff resource. Income from donations, events, community fundraising and Christmas card sales was £812,873 and remains stable. The costs of fundraising are monitored carefully and were lower than in the previous year due to the additional costs of exceptional events in the prior year.

2011 2012

2012 2013

2013 2014

2014 2015

2015 2016

2016 2017

2017 2018

2018 2019

Our fundraising approach

Last year, 99% of our funding came from our community of supporters. As such, we recognise the importance and value of that relationship and work hard to ensure that our supporters are satisfied with the way the organisation both raises and spends its funds. However, this does highlight the need to ensure that a strategic approach is taken to developing additional, sustainable sources of income. Many of our supporters take part in events to raise money through sponsorship. Whilst a considerable number organise places and events themselves, we do offer opportunities to take part in challenge events that involve commercial third parties. We have clear written contracts with these suppliers and there is full transparency of the costs involved.


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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

We are registered with the Fundraising Regulator and work to ensure that all our fundraising is carried out to recognised standards. We do not directly fundraise or market to individuals who have not signed up as supporters or agreed to receive mail from the charity with news, information and fundraising opportunities. We have a clear set of guidelines for people who fundraise on our behalf and these are sent to and agreed by the fundraiser in advance of any activity. We have had no complaints about our fundraising approach in the past year. Our fundraising is “light touch” rather than being intrusive or pressuring and we feel that this is appreciated by our supporters and donors.

General Data Protection Regulation (GDPR)

We welcomed the new legislation relating to privacy and donor information and undertook an extensive programme of activities to ensure our systems, processes and data are GDPR compliant. This approach and culture has been embedded across all processes and procedures and we continue to assess and review all operational activities on a regular basis.

Financial Review

In 2018-19, our overall incoming resources were £2,652,089 and the costs of raising funds were £162,488 leaving £2,489,601 available for charitable activities. The total spent on charitable activities was £1,481,302. This year we were very fortunate to receive an exceptional level of legacy income and we were the beneficiary of a few very generous bequests. This year grant awards amounted to £1,024,525. Whilst recognising the legacy income in 2018-19, we are aware a number of legacies will not give rise to realised funds for a period of time. In order to safeguard funds for the 2020/2021 grant rounds, the surplus for the year has been allocated to a designated

research reserve for awarding providing the charity with the opportunity to focus on developing a sustainable fundraising plan and activities to support the development of the refreshed strategy. Bank balances of £3,373,391 are held for ongoing and future grant commitments and day to day liabilities.

Specific investment powers of the trustees

The trustees, having regard to the liquidity requirements of research grants awarded, have kept available funds. Due to wider economic circumstances deposit rates have been depressed. Mindful of the low returns, the trustees agreed to invest up to £1,000,000 into a low/medium risk investment portfolio and an initial £500,000 was invested in 201617 in Charity Common Investment funds. A further £500,000 was invested in 2018-19.

Structure, governance and management Governing document

Epilepsy Research UK (ERUK) is a charitable company limited by guarantee, incorporated (as Epilepsy Research Foundation) on 21st August 2003 and registered as a charity on 30th October 2003. The company is governed by its Memorandum and Articles of Association. On 22nd March 2007, The Memorandum and Articles of Association were amended by a special resolution to change the name of the company from Epilepsy Research Foundation to Epilepsy Research UK (as part of the merger process with the Fund for Epilepsy) and the company was registered with Companies House under this name on 30th March 2007. In the event of the company being wound up members are required to contribute an amount not exceeding £1.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Appointment of trustees

As set out in the Articles of Association the trustees are appointed by the Board of Trustees. The Articles of Association provide for a minimum of 7 and a maximum of 16 trustees. At each Annual General Meeting one third of the trustees must put themselves forward for re-appointment. The Board takes account of the skills and experience of its members when seeking to recruit new trustees and aims to recruit at least one new trustee each year. New trustees are selected as a result of nomination from members of the Board and through open advertisement.

Trustee induction and training

Epilepsy Research UK provides an induction process for new trustees, so each new trustee receives a job description outlining a trustee’s responsibilities and is briefed by on the history, structure and ambitions of Epilepsy Research UK and financial responsibilities. New trustees also receive the Charity Commission publication The Essential Trustee. Trustees are encouraged to attend appropriate external training events that will develop their contribution to the governance of Epilepsy Research UK.

Organisation

The activities of Epilepsy Research UK are governed by the Board of Trustees, all of whom are Directors. The Board meets four times per year and devolves responsibility for overseeing the day-to-day running of the organisation to the Management Committee composed of the Chairman, Honorary Treasurer, two other trustees and the Chief Executive. The Chief Executive is appointed by the trustees to manage the day-to-day operations of the charity.

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Related parties

To assist the trustees in the selection and monitoring of research grants, Epilepsy Research UK has a Scientific Advisory Committee (SAC) which is composed of leading epilepsy experts and lay people. Membership of the SAC is by invitation.

Pay policy for senior staff

The directors, who are the Charity’s trustees, and the Chief Executive comprise the key management personnel of the charity in charge of directing, controlling, running and operating the Charity on a day to day basis. All directors give of their time freely and no director received remuneration in the year. Details of directors’ expenses and related party transactions are disclosed in note 10 to the accounts. The Management Committee, excluding the Chief Executive, review employee pay on an annual basis considering performance against objectives set and the retail price index. The pay of the Chief Executive is reviewed annually and normally increased in accordance with average earnings and by reference to that of Chief Executives of charities of similar size.

Discussions with other parties

As part of the merger with the Fund for Epilepsy in March 2007, two companies, Epilepsy Research Foundation Ltd and Fund for Epilepsy Ltd, were incorporated to protect these names, with Epilepsy Research UK as sole member. On a regular basis staff and trustees meet representatives of other charities and specialists in the field of epilepsy.


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Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Risk management and disclosure

The trustees view the strategic management of risk as an integral part supporting effective planning and evaluation of its activities. Risk management is focused on risks associated with delivering our strategy and the 2019-20 business plan, with identified risks embedded in our strategic and operational processes. Governance of the risk management ultimately sits with the Board of Trustees. Our risk management approach details the structures and processes that have been put in place, and the key roles and responsibilities for successful risk management. In order to manage these risks, there are a number of controls and mitigations in place including (but not limited to): 1. Business plan and budget which has regular Board of Trustees oversight 2. Financial controls and policies (such as reserves, investment policies and ethical fundraising) 3. Disaster recovery and business continuity planning 4. Strategic partnership work. There are three key strategic risks which cover both external and internal risks: Risk 1: Insufficient resources to deliver the 2019-20 strategy Risk 2: We do not have the right trustees, management, employee and volunteer capacity or capability Risk 3: Our actions or behaviour damages the charity reputation with key stakeholders

only provide reasonable but not absolute assurance that major risks have been adequately managed. Overall, we are confident our risk position remains within acceptable levels. Key financial and nonfinancial risks are monitored throughout the year and reported to the Trustees on a quarterly basis.

Reserves policy

The Charity’s reserves policy focuses on the level of “free reserves”. Free reserves exclude restricted funds and designated funds. The recommended free reserves level is calculated annually in advance of the budget process on the basis of the financial impact of the current risks facing the charity and is reviewed annually by the trustees. The Charity seeks to maintain free reserves to manage the risks to which the Charity is exposed in the course of its business, including, but not limited to, safeguarding against the volatility of voluntary income. The trustees consider that in order to meet these needs, and to operate effectively, the Charity needs reserves of around £650,000. The free reserves at 31 March 2019 are £654,544. Due to the exceptional legacy donations for 2017/18 and 2018/19 it was agreed that in order to safeguard funds for the 2020/2021 grant rounds, £1,690,000 would be allocated to a designated research reserve. Designating funds will enable to the charity to focus on developing a sustainable fundraising plan and activities to support the development of the refreshed strategy.

Statement of trustees’ responsibilities

The charity trustees (who are also the directors of Epilepsy Research UK for the purposes of company law) are responsible for preparing a trustee annual report and financial statements in accordance The Board of Trustees are satisfied that the major risks with applicable law and United Kingdom Generally have been identified and processes for addressing are Accepted Accounting Practice. in place. It is recognised that any control systems can


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Company law requires the charity trustees to prepare financial statements for each year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources including the income and expenditure of the charitable company for that period. In preparing those financial statements, the trustees are required to: - select suitable accounting policies and apply them consistently - observe the methods and principles in the applicable Charity SORP - make judgements and estimates that are reasonable and prudent - state whether applicable accounting standards have been followed - prepare financial statements on a ‘going concern’ basis unless it is inappropriate to presume that the charitable company will continue in business

Statement as to disclosure of information to auditors

In so far as the trustees are aware at the time of approving our trustees’ annual report: • t here is no relevant information, being information needed by the auditor in connection with preparing their report, of which the auditor is unaware, and • t he trustees having made enquiries of fellow directors and the company’s auditor that they ought to have individually taken, have each taken all steps that he/she is obliged to take as a director in order to make themselves aware of any relevant audit information and to establish that the auditor is aware of that information. By order of the Board of Trustees

The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the Professor Matthew Walker charitable company and to enable them to ensure that Chair, Board of Trustees the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

19


20

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Report of the independent auditors to the trustees of Epilepsy Research UK We have audited the financial statements of Epilepsy Research UK (the Charity) for the year ended 31st March 2019 which comprise the Statement of Financial Activities, the Balance Sheet, the Cash Flow Statement, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102: The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice). This report is made solely to the Charity’s trustees, as a body, in accordance with section 144 of the Charities Act 2011 and the regulations made under section 154 of that Act. Our audit work has been undertaken so that we might state to the charity’s trustees those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the Charity’s trustees as a body, for our audit work, for this report, or for the opinions we have formed.

Opinion on financial statements

In our opinion the financial statements: • g ive a true and fair view of the state of the Charity’s affairs as at 31st March 2019 and of its income and expenditure, for the year then ended • have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice • have been prepared in accordance with the requirements of the Companies Act 2006

Basis of Opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs) (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the Charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Conclusions relating to going concern

We have nothing to report in respect of the following matters in relation to which the ISAs (UK) requires us to report to you where: The trustees’ use of the going concern basis of accounting in the preparation is not appropriate, or the trustees have not disclosed in the financial statements any identified material uncertainties that may cast significant doubt about the Charity’s ability to continue to adopt the going concern basis of accounting for a period of at least twelve months from the date when the financial statements are authorised for issue.

Other information

The trustees are responsible for the other information. The other information comprises the information included in the annual report other than the financial statements and our auditor’s report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material

21

misstatement in the financial statements or a material misstatement of other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.

Matters on which we are required to report by exception In the light of the knowledge and understanding of the Charity and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees’ Annual Report (including the Strategic Report).

We have nothing to report in respect of the following matters in relation to which the Charities Act 2011 requires us to report to you if, in our opinion: • adequate accounting records have not been kept or returns adequate for our audit have not been received from branches not visited by us; • the financial statements are not in agreement with the accounting records and returns; •w  e have not received all the information and explanations we require for our audit; • the directors were not entitled to take advantage of the small companies exemption from the requirement to prepare a strategic report.


22

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Responsibilities of trustees

As explained more fully in the Trustees’ Responsibilities Statement, set out on pages 18-19, the trustees are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view. And for such internal control as they determine is necessary to enable the preparation of the financial statements that are free from material misstatement, whether due to fraud or error. In preparing the financial statements, the trustees are responsible for assessing the Charity’s ability to continue as a going concern, disclosing, as applicable, matters relating to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the Charity or to cease operation, or have no realistic option but to do so.

Our responsibilities for the audit of the financial statements

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements. A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at www.frs.org/responsibilities. This description forms part of our auditor’s report.

The trustees have elected for the financial statements to be audited in accordance with the Charities Act 2011 rather than the Companies Act 2006. Accordingly, we have been appointed as auditor under section 144 of the Charities Act 2011 and report in accordance with A Davies ACA (Senior Statutory Auditor) regulation made under section 154 of that Act. F A Magee & Company, Chartered Accountants & Statutory Auditors Wimborne House, 4-6 Pump Lane, Hayes, UB3 3NB


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

23

Statement of Financial Activities (including the Income & Expenditure Account) for the year ended 31st March 2019 Note

Total

Total

Unrestricted Funds £

Restricted Funds £

Funds 2019 £

Funds 2018 £

Income from: Donations and legacies

2

2,571,640

-

2,571,640

2,144,553

Charitable activities research grants not required

6

18,067

-

18,067

30,065

Other trading activities

3

26,034

-

26,034

29,962

Investments

4

36,348

-

36,348

23,210

2,652,089

-

2,652,089

2,227,790

5

162,488

-

162,488

240,907

Research grants committed

6

1,024,525

-

1,024,525

1,034,182

Other charitable activities

7

455,116

1,661

456,777

389,143

Total Charitable Activities

1,479,641

1,661

1,481,302

1,423,325

Total Expenditure

1,642,129

1,661

1,643,790

1,664,232

16,592

-

16,592

(10,195)

Net Income/(Expenditure) for the year

1,026,552

(1,661)

1,024,891

553,363

Net Movement in Funds for the year

1,026,552

(1,661)

1,024,891

553,363

1,317,992

29,995

1,347,987

794,624

2,344,544

28,334

2,372,878

1,347,987

Total Income Expenditure on: Raising funds Charitable Activities:

Net gain/(loss) on investments

Reconciliation of funds Total funds brought forward at 1 April 2018 Total funds carried forward at 31 March 2019

17

The statement of financial activities includes all gains and losses in the year. All incoming resources and resources expended derive from continuing activities.


24

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Balance Sheet at 31st March 2019 Note

2019 £

2018 £

11

1,056,210

519,430

Debtors

12

984,700

791,099

Cash at bank and in hand

13

3,373,391

2,574,716

4,358,091

3,365,815

(1,777,291)

(1,260,790)

2,580,800

2,105,025

3,637,010

2,624,455

(1,264,132)

(1,276,468)

2,372,878

1,347,987

Fixed Assets Investments Current Assets

Creditors: Amounts falling due within one year

14

Net Current Assets Total Assets less Current Liabilities Creditors: Amounts falling due after more than one year

14

Total Net Assets The Funds of the Charity Unrestricted Funds Designated Funds

15

1,690,000

768,000

General Fund

15

654,544

549,992

2,344,544

1,317,992

28,334

29,995

2,372,878

1,347,987

Restricted Funds

16

Total Charity Funds The financial statements were approved by the Board of Trustees on

Prof Matthew Walker

and signed on its behalf by:

Judith Spencer-Gregson FCA

Chair Treasurer

The notes on pages 25 to 35 form part of these financial statements.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

25

Statement of Cash Flows

for the year ended 31st March 2019 Note

Cash Inflow/(Outflow) from Operating Activities

19

2019 £

2018 £

1,282,515

378,523

200,000

-

(700,000)

(15,544)

Cash Flows from Investing Activities Sale of investments Net purchase of investments Income reinvested Dividends and interest received

(20,126) 36,286

23,210

(483,840)

7,666

798,675

386,189

Cash and Cash Equivalents at the Beginning of the Year

2,574,716

2,188,527

Cash and Cash Equivalents at the End of the Year

3,373,391

2,574,716

Net Cash Inflow/(Outflow) from Investing Activities Increase/(Decrease) in Cash and Cash Equivalents in the Year


26

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Notes forming part of the financial statements

c) Incoming resources Voluntary income and donations are taken into the accounts when received. The income from fundraising ventures is shown gross, with the 1 Accounting policies associated costs included in fundraising costs. The charity is a company limited by guarantee and Legacy income is included in the Statement of has no share capital. In the event of the charity Financial Activities to the extent of cash received being wound up the liability in respect of the or a clear indication regarding amounts receivable guarantee is limited to £1 per member of the charity. has been given by executors. No endowments have been received in the period. a) Basis of preparation The financial statements have been prepared in d) Resources expended accordance with Accounting and Reporting by All expenses are accounted for on an accruals basis. Charities: Statement of Recommended Practice Wherever possible costs are allocated directly to applicable to charities preparing their accounts in the appropriate activity; other costs common to all accordance with the Financial Reporting Standard activities are apportioned between those activities applicable in the UK and Republic of Ireland (FRS based on the proportion of staff time spent during 102) (effective 1 January 2015) – Charities SORP each year in connection with each activity (FRS 102), the Financial Reporting Standard (see note 8). applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006. Fundraising expenditure comprises costs incurred in asking people and organisations to donate to the Epilepsy Research UK meets the definition of a charity’s work. This includes the cost of advertising public benefit entity under FRS 102. Assets and for donations and the staging of special fundraising liabilities are initially recognised at historical cost events. or transaction value unless otherwise stated in the relevant accounting policy note(s). Expenditure incurred in connection with the specific objects of the charity is included under the heading Reconciliation with previous Generally Accepted Charitable Activities. Accounting Practice: in preparing the accounts, the trustees have considered whether in applying e) Donated services the accounting policies required by FRS 102 and Donated services are recognised as income when the Charities SORP FRS 102 the restatement of the receipt of economic benefit from the use by the comparative items was required. charity of the item is probable and that economic benefit can be measured reliably. b) Fixed assets Investments: The charity holds investments and f) Interest receivable these have been valued at market value as at the Interest on funds held on deposit is included when year end. receivable and the amount can be measured reliably Office equipment: The trustees consider the provision of all office equipment to be part of the running costs of the organisation and it is written off in the year of purchase.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

g) Grants committed All individual grants are fully provided for in the accounts in the year in which they are authorised by the trustees whether they are for short-term projects or for those extending over a year or more. All current grants are of a maximum duration of 3 years and all grants are covered by our cash balances and deposits. h) Pension costs The charity operates a defined contribution scheme with a charity contribution of 5% of salary costs. The cost of providing pensions for employees is charged to the Statement of Financial Activities in the year in which the contributions are paid. i) Value Added Tax (VAT) VAT is not recovered by the charity and is included in relevant costs in the Statement of Financial Activities. j) Operating leases It is policy to charge operating lease payments to the statement of financial activities in the year in which they arise. In July 2015, the charity entered five-year leases for the hire of a photocopier and a telephone system. All operating leases were cancelled fin March following the office relocation. k) Funds General funds are unrestricted funds which are available for use at the discretion of the trustees in furtherance of the general objects of the charity and have not been designated for other purposes. Designated funds comprise funds which have been set aside by the trustees for particular purposes.

27

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the charity for particular purposes. The cost of raising and administering such funds are charged against the specific fund. l) Taxation The charity is exempt from tax on income and gains falling within Part 10 of the Income Tax Act 2007 or section 252 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable activities.


28

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

2 Donations and Legacies Unrestricted Funds £

Restricted Funds £

Total 2019 £

Total 2018 £

17,488

-

17,488

48,215

In memoriam donations

112,486

-

112,486

151,495

Other donations

239,446

-

239,446

221,381

417,419

-

417,419

360,529

1,784,801

-

1,784,801

1,362,933

2,571,640

-

2,571,640

2,144,553

Charitable trusts

Fundraising events Legacies

Income from fundraising events arises from events organised by the charity and its supporters. Online advertising to the value of £90,137 (2018 £76,366) was donated as a Gift in Kind and this amount is included in ‘Other donations’. Legacies: The charity’s policy is to accrue into the accounts all legacies notified during the year where there is sufficient evidence to provide the necessary certainty that the legacy will be received and the value of the incoming resources can be measured with sufficient reliability. The charity has been bequeathed a property that is subject to a life tenancy interest held by the legator’s widow. At the time of the legator’s death in 2002, the property was valued at £95,000.

3 Other Trading Activities

Sales of Christmas cards

Unrestricted Funds £

Restricted Funds £

Total 2019 £

Total 2018 £

26,034

-

26,034

29,962

Unrestricted Funds £

Restricted Funds £

Total 2019 £

Total 2018 £

62

-

62

114

26,523

-

26,523

18,168

9,763

-

9,763

4,928

36,348

-

36,348

23,210

4 Investment income

Realised gain on investments Dividend and investment income Interest on deposits


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

29

5 Costs of generating funds Unrestricted Funds £

Restricted Funds £

Total 2019 £

Total 2018 £

Direct fundraising

70,362

-

70,362

120,473

Staff costs

57,797

-

57,797

84,607

30,683

-

30,683

28,826

3,646

7,001

162,488

240,907

2019 £

2018 £

Committed as at 31 March 2018

2,503,241

2,314,796

Authorised during year (see Trustees’ report)

1,024,525

1,034,182

(18,067)

(30,065)

Other overhead expenses Governance costs

3,646 162,488

-

6 Research Grants Committed

No longer required Paid in year

(519,553)

(815,672)

Committed as at 31 March 2019

2,990.146

2,503,241

Authorised grants represent awards made to research institutions to further the understanding and treatment of epilepsy. An overview of the awards is set out in the Trustees’ Report on pages 10-19. Details of all grants awarded are available on the website: www.epilepsyresearch.org.uk Research grants no longer required relates to projects that were completed without the original total grant being spent.

7 Other Charitable Activities Unrestricted Funds £

Restricted Funds £

Total 2019 £

Total 2018 £

186,566

-

186,566

197,230

Scientific workshop

31,163

-

31,163

-

Research network

11,037

-

11,037

780

-

1,661

1,661

1,204

Epilepsy awareness

119,114

-

119,114

113,022

Overhead expenses

95,845

-

95,845

61,878

11,391

-

11,391

15,029

455,116

1,661

456,777

389,143

Staff costs

Research prizes

Governance costs


30

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

8 Support and Governance costs Support Costs £

Governance Costs £

Total 2019 £

Total 2018 £

8,470

5,633

14,103

8,912

Office rent and facilities

23,397

-

23,397

19,651

Office running costs

69,824

1,109

70,933

47,306

IT and bank charges

17,939

-

17,939

25,389

Investment fees

6,898

-

6,898

-

Audit

-

4,880

4,880

4,005

Trustee meetings & expenses

-

2,609

2,609

2,922

Legal & professional fees

-

806

806

4,549

126,528

15,037

141,565

112,734

Staff costs

Basis of Allocation Allocated to fundraising costs

30,683

3,646

34,329

24.25%

Allocated to charitable activities

95,845

11,391

107,236

75.75%

126,528

15,037

141,565

100%

2019 £

2018 £

Operating leases – office rental and office machinery

5,464

2,500

Auditors’ remuneration

4,880

4,005

860

1,642

2019 £

2018 £

219,295

256,949

Social security costs

20,384

23,090

Pension costs

10,317

10,710

249,996

290,749

0

0

9 Net incoming resources are after charging the following:

Payroll fees

10 Staff Costs

Salaries

No employees earned more than £60,000


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

31

The average number of full-time equivalent employees (including part-time staff) during the year was as follows: 2019

2018

Charitable activities

3.0

2.5

Fundraising

1.9

2.9

Governance

0.1

0.1

5.0

5.5

The trustees do not receive any remuneration for their duties but during the year five trustees received expenses for travelling to meetings amounting to £769 (2018: £1,394). No trustee or persons with family or business connections with trustees has received remuneration directly or indirectly from the charity. The charity includes Trustees’ Liability Insurance in its combined insurance policy.

11 Investments 2019 £

2018 £

Market value 1 April 2018

519,430

514,081

Acquisitions

700,000

-

(200,000)

-

Investment charges

(6,398)

-

Income reinvested

26,523

15,544

1,039,555

529,625

Sales

Net gain/(loss) realised and unrealised Market value 31 March 2019

16,655

(10,195)

1,056,210

519,430

1,056,199

519,430

11

-

1,056,210

519,430

Analysis of investments Quoted Charity Common Investment funds Medium and long term Cash on deposit


32

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

12 Debtors

Gift Aid recoverable Prepayments & accrued income

2019 £

2018 £

23,868

23,861

960,832

767,238

984,700

791,099

Debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid after taking account of any trade discounts due.

13 Cash Movements Cash Deposits £

Cash at Bank £

Total

Balance as at 31 March 2018

1,343,935

1,230,781

2,574,716

Cash inflow/(outflow) flow

508,884

289,791

798,675

Balance as at 31 March 2019

1,852,819

1,520,572

3,373,391

£

Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of less than twelve months from the balance sheet date.

14 Liabilities 2019 £

2018 £

1,726,014

1,226,593

21,779

8,805

29,498

25,212

Due within 12 months

1,777,291

1,260,610

Research grants due after 12 months

1,264,132

1,276,468

3,041,423

2,537,078

Research grants not yet claimed Accruals Other creditors

Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

33

15 Unrestricted Funds These represent amounts expendable at the discretion of the trustees. The balance of the charity’s resources represents free reserves which are retained to protect the work of the charity in the event of unforeseen and significant changes in its financial position. The designated fund represents money set aside by the trustees for future research grants.

Balance as at 31 March 2018

Designated Research Fund £

General Fund

Total

£

£

768,000

549,992

1,317,992

-

1,026,552

1,026,552

Net incoming resources Transfer between funds Balance as at 31 March 2019

922,000

(922,000)

-

1,690,000

654,544

2,344,544

16 Restricted Funds

Intercapital prize

1 April 2018 £

Incoming Resources £

Resources Expended £

Transfer £

31 March 2019 £

29,995

-

(1,661)

-

28,334

29,995

-

(1,661)

-

28,334

17 Analysis of Net Assets between Funds Unrestricted Funds £

Restricted Funds £

Total Funds £

Total assets

5,385,967

28,334

5,414,301

Current liabilities

(1,777,291)

-

(1,777,291)

(1,264,132)

-

(1,264,132)

2,344,544

28,334

2,372,878

Creditors falling due after more than 1 year


34

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

18 Related Party Transactions During the year payments were made to institutions for research projects where an Epilepsy Research UK trustee is named as principal investigator. In the year ended 31 March 2019 payments of £10,861 were made to University College London towards a grant to Professor S Schorge. This grant was approved prior to her appointment as a trustee. (In 2018 - £28,510 was paid to University College London towards a grant awarded in 2013 to Professor Matthew Walker). The field of epilepsy research is highly specialised and for Epilepsy Research UK to function effectively it is vital that leading practitioners are represented on our trustee board and our Scientific Advisory Committee (SAC). Trustees and SAC members are eligible to submit funding applications to Epilepsy Research UK, but they must declare any conflicts of interest concerning grant applications and are excluded from any discussion regarding the merits of such applications.

19 Reconciliation of Net Movement in Funds to Net Cash Flow from Operating Activities 2019 £

2018 £

1,024,891

553,363

Deduct Investment income shown in investing activities

(36,348)

(23,210)

Deduct/Add investment gain/loss

(16,592)

10,195

(193,601)

(333,788)

Increase/(Decrease) in creditors due within 1 year

516,501

(68,973)

Increase/(Decrease) in creditors due after more than 1 year

(12,336)

240,936

1,282,515

378,523

Net movement in funds

(Increase) in debtors

Net cash used in operating activities


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

35

20 Statement of Financial Activity for the year ended 31 March 2018 (prior year) Note

Unrestricted Funds £

Restricted Funds £

Total Funds 2018 £

Income from: Donations and legacies

2

2,139,553

5,000

2,144,553

Charitable activities - research grants not required

6

30,065

-

30,065

Other trading activities

3

29,962

-

29,962

Investments

4

23,210

-

23,210

2,222,790

5,000

2,227,790

5

240,907

-

240,907

Research grants committed

6

1,029,182

5,000

1,034,182

Other charitable activities

7

387,939

1,204

389,143

1,417,121

6,204

1,423,325

1,658,028

6,204

1,664,232

Net (loss)/gains on investments

(10,195)

-

(10,195)

Net Income/(Expenditure) for the year

554,567

(1,204)

553,363

Net Movement in Funds for the year

554,567

(1,204)

553,363

763,425

31,199

794,624

1,317,992

29,995

1,347,987

Total Income Expenditure on: Raising funds Charitable Activities:

Total Charitable Activities Total Expenditure

Reconciliation of funds Total funds brought forward at 1 April 2017 Total funds carried forward at 31 March 2019

17


36

Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

Thank you for driving and enabling our vital research Research is a collaborative activity. Our work would not be possible without the incredible fundraising efforts of our loyal supporters, or the hard work and dedication of our funded researchers. So thank you from all of us to all of you. Here is a selection of what they say about us and our work. From supporters:

“My message to researchers would be … you have no idea how valuable what you are doing is. You are going to change somebody’s life (with what you do)” Faye Waddams

“It is only really when it affects your life that you realise just how crucial research into the condition is” Nick Christian

“There should be more emphasis on funds coming into epilepsy research. The only solution to finding a way forward is through research” Murray Weston

“Research is the only way to improve the lives of those diagnosed with epilepsy” Siobhan Killeen


Epilepsy Research UK Trustees’ Report and Financial Statements for the year ended 31st March 2019

From researchers:

“I think we’re on the cusp of a revolution with our ability to collect substantial amounts of data and new tools and techniques to analyse that data for the benefits of people with epilepsy”  John Terry, Professor of Biomedical Modelling, University of Exeter

“With all the research that we are doing we will, for sure, ameliorate the quality of life (for those living with epilepsy)” Dr Gabriele Lignani, ERUK Research Fellow, University College London

“The realistic hope is that within 5-10 years there will be more people that are seizure free. ” Professor Michael Cousin, Chair of Neuronal Cell Biology, University of Edinburgh

“As research makes progress we will discover more effective treatments and many more people will be able to become seizure-free”. Tom Jensen, epilepsy researcher and diagnosed with the condition

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ERUK Annual Accounts 2019  

ERUK Annual Accounts 2019