Annual Report and Financial Accounts 2019/20

ACCELERATING THE PACE OF DISCOVERY Annual Review 2019/20

LIFE CHANGING LIFE SAVING RESEARCH

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

600,000 LIVES Epilepsy can devastate the lives of ordinary, extraordinary people.

It’s invisible. It’s unpredictable. It’s frightening.

Every week 600 people in the UK are given the life-changing news they have epilepsy.

Some cases are genetic, some are caused by an infection or a brain injury. In the majority of cases, the cause is unknown.

600,000 are currently living with epilepsy in the UK. For one third, treatment does not work.

600,000

PEOPLE IN THE UK LIVING WITH EPILEPSY

30% OF PEOPLE LIVE WITH UNCONTROLLED SEIZURES THAT DO NOT RESPOND TO MEDICATION IN 65% OF PEOPLE THERE IS NO KNOWN CAUSE

65%

“Research into epilepsy has been transformational in my life and in the lives of many of us who have benefited from it, but there is much left to be done in terms of the diagnosis and treatment for those for whom current treatments are ineffective.

Epilepsy Research UK is a leader in translating fundamental research into therapies that transform lives like mine.”

Carolyn

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

A LIFE FREE FROM EPILEPSY IS POSSIBLE BUT ONLY THROUGH RESEARCH Research has been successful in other conditions. But, a lack of funding in epilepsy research has meant progress is slow. In the past, too few researchers were attracted to the field, and too few projects were being funded, delaying progress.

As the only UK charity exclusively dedicated to driving and enabling research into the causes, diagnosis and treatments of epilepsy, we intend to play a vital role in providing help for today and hope for tomorrow.

Epilepsy Research UK (ERUK) is helping to change this landscape. Through our funding, more projects are taking place and more scientists are working in the field than ever before. What’s more, our investment is helping to unlock additional sources of funding – and that’s how we are contributing to achieving a life free from epilepsy for the 600,000 people living with the condition now and for future generations.

Epilepsy is not just being targeted in laboratories and hospitals. Thanks to our supporters taking action to raise money, it’s being targeted in homes, parks, workplaces and schools across the country. In 2019/20, our supporters donated an incredible £2,073,040. This money was invested to fund vital research in the diagnosis and treatment of epilepsy. In this review, you’ll see the action we took and the progress we made in 2019/20 towards achieving our vision of a life free from epilepsy.

For every £1 invested, our researchers have leveraged a further

£5.16

YOUR ACTION ACCELERATES OUR DISCOVERY

£1

£5.16

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

CONTENTS Page 6

Our 2020 grant awards

Page 8

Breaking down barriers to discovery

Page 10

Accelerating the pace of discovery for today and tomorrow

Page 16

Focusing the brightest and best minds on epilepsy

Page 22

Accelerating innovations

Page 26

Influencing for action

Page 28

Our committed and remarkable supporters

Page 30

TRUSTEES’ REPORT AND FINANCIAL STATEMENTS

Page 31

Officers of the charity

Page 32

Reference and administrative details

Page 33

Objectives and activities

Page 40

Independent auditor’s report

Page 43

Statement of financial activities

Page 44

Balance sheet

Page 45

Statement of cash flows

Page 46

Notes to the financial statements

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

We believe in the power of research.

We’ve seen the impact it’s had on how we treat other conditions, and there have been a number of important breakthroughs in epilepsy therapies that have improved the quality and length of life of many people living with epilepsy.

Epilepsy Research UK is firmly at the forefront of driving and enabling research into epilepsy.

To ensure we are able to accelerate the pace of new discoveries, much of last year was spent developing plans to strengthen, build capacity and, ultimately, maximise our impact. We launched a new strategy, and produced a five year implementation plan Aspiration to Action 2019/2020, that details the action we will take to achieve this ambition. And we created a new brand that reflects the quality of the work we support and our purpose as a charity.

In 2019/20 we invested more money in research than ever before. We have invested in innovative projects and fellowships. We have created new partnerships and collaborations. And we have taken action to influence the wider environment within which epilepsy research takes place.

One year into our strategy, we’ve already seen some important developments in ERUK-funded studies, resulting in new methods of brain scanning, new approaches to diagnoses and exciting developments in gene therapy.

Building a strong research community is one of our strategic priorities and an area in which we are having a significant impact. In February, we launched a Doctoral Training Centre (DTC) Grant scheme. This new scheme will support up to six PhD students to investigate the causes, diagnosis or treatment of epilepsy and associated conditions. Our new DTC grants, alongside our fellowship awards, will enable us to make solid progress in keeping the brightest minds focused on epilepsy.

We are proud of our achievements in 2019/20, but sadly towards the end of this reporting period, COVID-19 hit. Due to the continuing impact of the coronavirus pandemic, the obstacles we face are considerable. Fundraising is significantly reduced and research breakthroughs will be delayed.

Despite these challenges, our response to the pandemic was swift. Plans were adapted and pushed forward to support our researchers and protect their research. During this period of considerable financial uncertainty, our Board of Trustees showed a long-term commitment to our researchers by providing additional funding and extending deadlines.

We remain determined to do whatever we can to enable our researchers to continue to uncover new areas of knowledge around how to tackle epilepsy and take us closer to achieving our vision. We are only able to do this work thanks to our incredible supporters, the majority of whom have been personally touched by epilepsy. What we achieved in 2019/20 is directly because of their passion to change lives.

Sadly, epilepsy-related deaths claim the lives of 1,100 people in the UK each year. They, along with the 600,000 people living with epilepsy continue to inspire our fight against this devastating condition. Last year we were developing our plans.

Now, we are delivering them. Thank you for your support to enable us to do so.

Professor Matthew Walker, Chair of Trustees Maxine Smeaton, Chief Executive

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

OUR 2020 GRANT AWARDS EXPLORE PILOT STUDY

EXPLORE PILOT STUDY

Prof Richard Baines University of Manchester Characterisation of a new antiepileptic drug

Dr Simon Keller University of Liverpool Scanning technique to identify abnormal brain areas

ENDEAVOUR PROJECT GRANT

Odense, Denmark

EMERGING LEADER FELLOWSHIP AWARD

Dr Khalid Hamandi Cardiff University Seeing inside: non-invasive brain mapping of epileptic activity (SINIMA) EXPLORE PILOT STUDY

Dr Wessel Woldman University of Birmingham Assessing when and why epilepsy treatment fails to work

Melbourne, Australia

Dr Laura Mantoan Ritter King’s College London Determining causes and improving diagnostics of epilepsy with focal cortical dysplasia

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

ENDEAVOUR PROJECT GRANT CÉLINE NEWMAN BURSARY

Professor Michael Cousin University of Edinburgh Understanding and treating DNM1 epilepsy

Prof Andrew Trevelyan Newcastle University and Aix-Marseille University New tools for assessing mouse models

ENDEAVOUR PROJECT GRANT

Marseille, France Dr Sophie Bennett UCL Great Ormond Street Institute of Child Health Discovering outcomes from treating children’s mental health

ERUK & AUTISTICA FELLOWSHIP AWARD

Brussels, Belgium

Dr Charlotte Tye King’s College London Brain-based predictors of autism in infants with epilepsy

ENDEAVOUR PROJECT GRANT

Prof Matthew Walker UCL Institute of Neurology Investigating breath testing and sweat analysis to help diagnosis

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BREAKING DOWN BARRIERS TO DISCOVERY Epilepsy is a complex condition. And only through research will we unlock its secrets and find a way to end its devastating impact forever.

Our strategy, launched last year, aims to build our knowledge and understanding of epilepsy. It is robust, shaped by evidence and we are confident it will contribute towards finding new breakthroughs.

Between April 2019 and March 2020, thanks to the generosity of our supporters, we awarded over £1.3m across 10 projects – our largest research investment to date. These awards mean that we are currently funding a total of 40 research projects, involving over 140 researchers and collaborators at 55 research institutions and hospitals. Project collaborations extend to the US, Canada, Australia and throughout Europe.

Our strategy is broken down into three priority areas of research. Every project or person we fund, and every action we take fits into one of these priorities. This direct and targeted approach is to ensure we can maximise our resources and deliver real benefits to people living with epilepsy as quickly as possible.

“Research saved me.

I feel so fortunate to be able to live without the effects of epilepsy now and I do not take this for granted.”

Rachel, 18, now lives a life free from epilepsy after she underwent brain surgery

THREE PRIORITY AREAS OF RESEARCH PRIORITY

Promote, encourage, fund research into the causes and diagnosis of epilepsy and clinical management of people with epilepsy and associated conditions.

PRIORITY

Develop the next generation of epilepsy researchers and capacity-build the epilepsy research environment.

PRIORITY

Accelerate innovations for people with epilepsy by supporting research that will influence clinical practice and health policy.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

RESEARCH GRANTS IN 2020 This year we awarded 10 research grants totalling £1,340,440 each one looking at a particular aspect of the cause, prevention or treatment of epilepsy.

Summary of research grants awarded

£1.3m invested in research

PRINCIPAL INVESTIGATOR, TITLE INSTITUTION

AMOUNT

Dr Wessel Woldman University of Birmingham

Quantifying the effect of treatment using non-invasive recordings and computational modelling

£298,776

Dr Charlotte Tye King’s College London

Neural markers of emerging autism in infants with epilepsy Co-funded with Autistica Mental health treatment for children with epilepsy: outcomes for education, health and parents

£299,987

Volatile non-invasive biomarkers of epilepsy seizures (VIBES) study

£188,666

DNM1 Epileptic encephalopathy -mechanism and therapy Seeing inside: non-invasive brain mapping of epileptic activity (SINIMA)

£154,537

Dr Sophie Bennett UCL Great Ormond Street Institute of Child Health Professor Matthew Walker UCL Institute of Neurology Professor Michael Cousin University of Edinburgh Professor Khalid Hamandi Cardiff & Vale University Health Board and Cardiff University Dr Simon Keller University of Liverpool

Professor Richard Baines University of Manchester Dr Laura Mantoan Ritter King’s College London

Professor Andrew Trevelyan Newcastle University

Total grants awarded

£128,578

£165,055

Assessment of the mechanical properties of epileptogenic lesions using magnetic resonance elastography : a new diagnostic approach for people with epilepsy Targeting neuronal homeostasis to treat epilepsy

£28,802

Dissecting somatic mTOR pathway mosaicism in focal cortical dysplaisall A/B to develop minimally invasive screening tools and to test mTOR inhibitor efficacy in refractory epilepsy Multimodal telemetry of mouse behaviour: developing new tools for assessing epilepsy phenotypes and treatments

£30,073

£25,966

£20,000

£1,340,440

In addition, we are currently funding 31 other projects, approved in prior years, at institutes around the country, examples of which include investigating new methods of diagnosing and treating epilepsy such as gene therapies.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

PRIORITY

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ACCELERATING THE PACE OF DISCOVERY FOR TODAY AND TOMORROW PROMOTE, ENCOURAGE, FUND RESEARCH INTO THE CAUSES AND DIAGNOSIS OF EPILEPSY AND CLINCIAL MANAGEMENT OF PEOPLE WITH EPILEPSY AND ASSOCIATED CONDITIONS

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

ACCELERATING THE PACE OF DISCOVERY FOR TODAY The research we fund is not just focused on discovering future therapies, but is also aimed at improving diagnosis and treatments for people living with epilepsy today.

ACTION TAKEN IN 2019/20 Every day in the UK, 87 people are diagnosed with epilepsy. The pathway to diagnosis can often be lengthy, involving numerous tests and investigations. Improved diagnosis means people can get access to appropriate support much sooner. By utilising advances in science and technology, ERUK-funded researchers are discovering new methods to achieve accurate diagnoses.

USING ARTIFICIAL INTELLIGENCE TO IMPROVE DIAGNOSIS ERUK awarded a three-year grant to Professor Markus Reuber and colleagues at the University of Sheffield in 2019. Transient Loss of Consciousness (TLOC) is one of the most common reasons why people access emergency care services. While epilepsy is the most common cause of TLOC, it is also caused by other conditions. Successful treatment depends on correctly identifying the cause of TLOC. However, currently 20% of patients receive an incorrect diagnosis.

ERUK-FUNDED RESEARCH MAKING AN IMPACT By improving the diagnosis in emergency departments, it will mean more people are correctly and quickly referred, enabling them to receive the most appropriate treatment.

“The time has come to use advances in computer technology and automatic speech analysis to achieve early and accurate diagnoses with artificial intelligence systems.”

Professor Markus Reuber Professor Reuber and colleagues’ study aims to improve this process by programming an artificial intelligence system to ask patients about their TLOC symptoms and analyse their answers. Now in its second year, this study is exploring how this fully automated process for capturing and analysing patients’ conversations with a digital doctor contributes to improved diagnoses.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

REVOLUTIONISING EPILEPSY DIAGNOSIS USING SUBMARINE TECHNOLOGY Research doesn’t always have to take years to come to fruition. Some projects deliver ground-breaking results fast. In 2019 ERUK awarded a three year grant to Dr Umesh Vivekananda and colleagues at UCL to fund research to develop a state-of-the-art form of electrical brain recording called portable Magnetoencephalography (MEG).

Dr Umesh MEG measures local changes in the magnetic field caused by brain electrical Vivekananda currents. It is superior to electroencephalogram (EEG) that is typically used in the diagnosis of epilepsy. MEG is more accurate in locating the area of the brain producing the abnormal activity, and, unlike EEG, is only minimally affected by muscle movement or motion. However the use of MEG has not been broadly adopted because it’s expensive and restrictive for the person with epilepsy who has their head fixed within the scanner, unable to move.

To overcome these drawbacks Dr Vivekananda’s research aimed to perform MEG using a completely new method called Optically Pumped Magnetometers or OPMs.

“This technique has the potential to become a readily available clinical tool used to diagnose patients. It can record abnormal epileptic activity with much greater accuracy, and clarity than present methods, so greatly facilitating the identification of areas of brain region causing the epilepsy.”

Dr Umesh Vivekananda RAPID RESULTS AND A WORLD FIRST BREAKTHROUGH

ERUK-FUNDED RESEARCH MAKING AN IMPACT This research is a world first and we hope it will revolutionise diagnosis for people with epilepsy. As OP-MEG sensors work at room temperature and can be attached directly to the scalp, it allows for more detailed brain activity to be collected.

It will significantly reduce costs involved in using MEG and has the ability to provide unparalleled information on the type of abnormal electrical activity associated with the epilepsy and where in the brain this emanates from.

Dr Vivekananda’s ground-breaking work involved applying a method based on technology used to detect submarines by recording fluctuations in the earth’s magnetic field. The team at UCL, working with scientists at Nottingham University, translated this technology and applied the Optically Pumped Magnetoencephalography (OP-MEG) system for the first time in the case of a 47-year-old woman with epilepsy. The world first case study of this recording of magnetic fluctuations in the brain was published in the journal Annals of Clinical and Translational Neurology.

“It’s been quite a journey, but I’d love for one day to not have to worry if a partial seizure might occur, or if I’ll be greeted by a nocturnal seizure in the morning, and that’s why research into this condition is so important.”

Annie

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

ACCELERATING THE PACE OF DISCOVERY FOR TOMORROW Progress in gene sequencing is changing how researchers study epilepsy. Innovations in technology, analytics and collaboration have led to significant progress in gene discovery. The number of epilepsy-associated genes has grown to around 1,000, and over 50 genes have been newly associated with epilepsy in the last three years alone.

Over 50 genes

This knowledge is serving as an essential springboard for further research, such as the creation of better laboratory models, a greater understanding of the pivotal events that result in epilepsy and using gene therapy to treat it. Our ERUK-funded researchers are at the forefront of this work.

have been newly associated with epilepsy in the last 3 years

ACTION TAKEN IN 2019/20 ERUK-FUNDED RESEARCH MAKING AN IMPACT This study has opened up an exciting new avenue for epilepsy treatment. Our funding led to a programme grant from the MRC worth ÂŁ2.46m and a European Commission grant worth over ÂŁ3m being awarded in 2019.

It also shows how research we funded years earlier is continuing to push forward future discoveries in finding effective treatments for people with epilepsy.

FROM BENCH TO BEDSIDE Research we funded in 2009, is now very close to being trialled in humans. In 2009, Professor Matthew Walker at the Institute of Neurology, UCL received a grant to investigate whether prolonged seizures cause changes in the number of potassium channels, and the effect that this might have on neuronal activity. Certain sub-types of potassium channels have been found to regulate the release of glutamate from pre-synaptic membranes. Dysfunction of these has been proposed to increase brain excitability.

Professor Walker investigated the potential to use a type of gene therapy (involving a virus that had been modified to carry the potassium channel gene) to restore potassium channel activity. Now, in 2020, the team are close to testing this gene therapy in humans.

Professor Matthew Walker

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

A grant we provided to Dr Gabriele Lignani in 2017 has, in 2019, led to an additional £700,000 of funding. Funding that will greatly enable progress towards tackling epilepsy.

TREATING THE CONDITION, NOT JUST ITS SYMPTOMS Gene therapy is an exciting treatment that can change or modulate our genetic code to treat the causes of a disease rather than just its symptoms. Dr Lignani, UCL Queen Square Institute of Neurology was awarded an ERUK Emerging Leader Fellowship Award in 2017, to investigate gene therapy as a potential treatment for patients with hard to treat epilepsies.

In 2019, Dr Lignani was awarded an MRC New Investigator Research Grant worth nearly £700,000 to build on the ERUK-funded research to investigate the use of gene therapy in Dravet Syndrome.

“This MRC New Investigator Research Grant was only possible due to my ERUK Emerging Leader Fellowship Award.

Support from ERUK has enabled me not only to apply for this grant, but to collaborate with a team in Italy to learn about key advances in molecular genetic techniques that can be implemented in our lab at the Institute of Neurology.”

Dr Gabriele Lignani Dr Lignani and supervisor Professor Stephanie Schorge, have pioneered new ways to precisely treat brain cells in order to develop more effective gene therapies, taking advantage of recent technological innovations such as CRISPR, a powerful tool that can be used to target specific genes and change the genetic code.

“There have been significant medical advances in helping some kinds of epilepsy; gene therapy is very promising, and we must continue to look for more breakthroughs which will help prevent the same tragedy happening to others.”

The Bettelley family lost their son and brother, Andrew, to epilepsy in 2007

ERUK-FUNDED RESEARCH MAKING AN IMPACT Our hope is that this exciting area of research will deliver treatment options for the one third of people living with epilepsy for whom treatment remains ineffective.

Of course, converting our growing knowledge in gene therapy in laboratory environments to targeted treatments in people with epilepsy is the next frontier – and one we are getting ever closer to.

John Betttelley, pictured, sadly passed away last year. We would like to take this opportunity to acknowledge John’s significant contribution to Epilepsy Research UK - strategically, financially and as a committed advocate for our work.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

PRIORITY

2

FOCUSING THE BRIGHTEST AND BEST MINDS ON EPILEPSY DEVELOP THE NEXT GENERATION OF EPILEPSY RESEARCHERS AND CAPACITY-BUILD THE EPILEPSY RESEARCH ENVIRONMENT

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

FOCUSING THE BRIGHTEST AND BEST MINDS ON EPILEPSY

“Receiving a grant Building a strong research community is one of our strategic from ERUK transforms priorities. Securing the most promising scientists into this careers, but, even more community right now, will have the greatest impact for importantly it drives forward people living with epilepsy in the future. To fund the best research to accelerate research, we need access to the best researchers. our knowledge into this devastating condition.”

Our fellowships awards allow us to attract the best clinicians, develop their Professor scientific expertise and place them at the heart of epilepsy research. This commitment to supporting the careers of researchers through these awards Stephanie Schorge is helping to strengthen epilepsy research capacity in the UK.

Alongside attracting the best minds we must grow, connect and capacity-build our network of epilepsy researchers and ensure ideas, data and discoveries are shared quickly to help build on the growing body of information about epilepsy. Through this we hope to speed up research progress and accelerate the pace of discoveries.

ERUK has awarded over 21 Fellowship Awards, totalling an investment of over £3.6 million.

ACTION TAKEN IN 2019/20 INTERNATIONAL EXPERT WORKSHOP 2019 Our international workshop brought together 50 world-class researchers 36 institutions 11 countries. By bringing together the world’s leading researchers in one place to share ideas and expertise, it enables them to go back to their laboratories with new knowledge to complement their own research.

The workshop covered themes including epileptic encephalopathy, genetic epilepsies, behaviour and development and molecular therapeutic strategies. Researchers heard talks on gene therapy, cell therapies, computer-based models of epilepsy and saw a new online tool to help interpret genetic variants of epilepsy.

The impact of COVID-19 has meant that the future of large, public events is uncertain. We are committed to finding new ways to ensure this sharing of information continues. In 2020, we will explore how online tools and resources can support scientific networking, information exchange and faster access to new research findings.

“As scientists we know that each increment in knowledge, every marginal gain, when added together can make big differences to the lives of people with epilepsy.”

Professor Zuberi, Expert Workshop Chair

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

INCREASING OUR INVESTMENT We have increased our ERUK Emerging Leader Fellowship Award from £250,000 to £300,000.

This increase in funding will help to maximise the impact of the research and provides provision for the Fellow to supervise a PhD student, thus securing yet another bright young mind to the field of epilepsy research.

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NEW DOCTORAL TRAINING CENTRE (DTC) GRANT SCHEME This new scheme will support up to 6 PhD students to investigate the causes, diagnosis or treatment of epilepsy and associated conditions. We hope this new scheme will attract the next generation of researchers to epilepsy.

DEVELOPING SCIENTIFIC EXPERTISE Since 2011, we have awarded 10 Emerging Leader Fellows and 1 ERUK & Autistica Fellow. These Fellowships have launched careers and allowed researchers to build up specialist knowledge, enabling them to go on to lead research studies in the future, greatly contributing to the care of people living with epilepsy.

“My Fellowship allowed me to pursue an entirely new area of epilepsy biology at a critically formative time in my career. It has shaped my scientific development more than any other award and set my research direction along a path that continues to this day. Without it, I simply would not have been drawn to epilepsy research.”

Professor Liam Gray, Professor of Neurosurgery, Cardiff University

“Being awarded an ERUK Fellowship has had a significant impact on my career. I’m now the lead consultant of the Epilepsy Surgery Programme at the John Radcliffe Hospital, Oxford. The ERUK Fellowship Award has shaped my career and has subsequently shaped the career of very talented early career scientists including Dr Natalie Voets, who continued the research.”

Dr Jane Adcock, Consultant Neurologist, John Radcliffe Hospital, Oxford

INTRODUCING OUR NEWEST EMERGING LEADER FELLOW In 2019/20 we awarded Dr Wessel Woldman, University of Birmingham our Emerging Leader Fellowship Award. This award will fund Dr Woldman’s research in developing mathematical models to further our knowledge of how treatment options – medication or surgery - influence brain activity.

Using these models, the team will interrogate data recordings from people with juvenile absence epilepsy and other genetic generalised epilepsies who are taking new antiepileptic drugs, and recordings from people with focal epilepsy who have undergone surgery. This will allow Dr Woldman and his collaborators at St Vincent’s Hospital, Melbourne to reveal features currently hidden in the data, which could indicate why certain people continue having seizures whilst others become seizure-free.

ERUK-FUNDED RESEARCH MAKING AN IMPACT Dr Woldman’s research will contribute to the development of robust prognostic markers that could be used to help inform patient management within the next 5 to 10 years and could significantly improve self-management of seizures.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

EXPANDING OUR KNOWLEDGE 2019/20 saw the completion of two ERUK-funded fellowships that have contributed towards our understanding of epilepsy.

A NEW APPROACH TO BLOCKING SEIZURE NETWORKS IN TEMPORAL LOBE EPILEPSY Dr Alfredo Gonzalez-Sulser, University of Edinburgh received an Emerging Fellowship Award in 2016. The conclusion of his research into using light to block seizures in temporal lobe epilepsy has greatly increased our knowledge of brain regions generating seizures.

“The identification of a new cellular target in the brain to block seizures will hopefully make a difference for people with epilepsy through further research. I’m humbled and honoured to have been chosen as an ERUK Emerging Leader Fellow and wish to express my sincere gratitude to the supporters of ERUK.” Dr Alfredo Gonzalez-Sulser ERUK-FUNDED RESEARCH MAKING AN IMPACT These findings increase our knowledge of brain regions generating seizures. The medial septum has become a potential target for deep brain stimulation, gene therapy or optogenetics which could be applied in the clinic.

Antiepileptic drugs and surgery are often ineffective in controlling seizures in patients with temporal lobe epilepsy (TLE). Dr Gonzalez-Sulser’s research investigated the use of optogenetics, a technique to selectively control brain cells with light.

Cells in a part of the brain called the medial septum were chosen and found to be a viable target as they survive in conditions where there is brain damage associated with epilepsy. Promisingly, the cells effectively blocked seizures when optogenetically stimulated.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

THE IMMUNE SYSTEM AND EPILEPSY – EXPLORING UNANSWERED QUESTIONS In 2016 Dr Sukhvir Wright at Aston University was awarded an Emerging Fellowship Award in autoimmunity, the immune system and epilepsy.

The fellowship was aimed to lead to a refinement of immune-targeting drugs so that they can be effective in epilepsy with minimal side effects.

While Dr Wright’s fellowship concluded in 2019, her research has not. In 2019, Dr Wright was awarded a Wellcome Clinical Research Career Development Fellowship worth over £1 million. This funding is to continue Dr Wright’s ERUK-funded research into autoimmunity and epilepsy, and to develop treatments that reverse the damage caused.

ERUK-FUNDED RESEARCH MAKING AN IMPACT The study involved drug compounds already available (although some are not routinely used in the management of epilepsy), meaning patients could benefit from this research in as little as three years’ time.

“As a doctor, having witnessed first-hand the suffering and devastation caused by autoimmune and intractable epilepsy, it would be an enormous privilege to make treatment discoveries that could transform these lives.”

Dr Sukhvir Wright

“A few years ago I was diagnosed with ankylosing spondylitis (AS), an autoimmune type of arthritis. The treatment - adalimumab and methotrexate - has transformed my life.

Unfortunately though my neurologist also thought that complications related to it were behind a breakthrough seizure three years ago, after I’d been controlled for 20 years.

“It would be wonderful if Dr Wright’s work could lead to a refinement of immune-targeting drugs, so that they can be effective in controlling epilepsy rather than contributing towards it. And it’s fantastic ERUK is enabling scientists in Britain to push boundaries in this way and thus improve the quality of people’s lives. Thank you Dr Wright for your research and thank you ERUK for being the catalyst to make it possible.”

Tom

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PRIORITY

3

ACCELERATING INNOVATIONS ACCELERATE INNOVATIONS FOR PEOPLE WITH EPILEPSY BY SUPPORTING RESEARCH THAT WILL INFLUENCE CLINICAL PRACTICE AND HEALTH POLICY

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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ACCELERATING INNOVATIONS Innovation involves more than just scientific research and discovery. Innovation is focused on bringing new thinking and ideas to the benefit of people living with epilepsy as quickly as possible. As a significant funder of epilepsy research, providing grants for projects and people isn’t enough. We need to help create the best environment for research to flourish and to accelerate innovations for people with epilepsy.

ACCELERATING INNOVATIONS THROUGH FOSTERING A CULTURE OF COLLABORATION Creating new partnerships where innovation can both thrive and accelerate was a key part of our work in 2019/20. We joined forces with epilepsy charities in a common purpose to support advances in clinical care, conduct research and influence policy and practice.

ACTION TAKEN IN 2019/20 JOINT FELLOWSHIP WITH YOUNG EPILEPSY Approximately 112,000 children and young people are living with epilepsy in the UK. Existing anti-seizure medications have had little or no impact on the neurodevelopmental associated conditions of epilepsy.

Through supporting research in this underfunded area, we aim to change this.

In February, we launched our new Joint Fellowship Award with Young Epilepsy to drive forward innovations into the treatment of childhood epilepsies and reduce the impact of the condition on children and their families. The Young Epilepsy Panel, made up of children and young people living with epilepsy, will be asked to prioritise areas they’d like to see answered by research.

COLLABORATIONS TO IMPROVE EPILEPSY TREATMENT FOR AUTISTIC PEOPLE Over 240,000 people living with epilepsy are autistic. Autistic people are more likely to have epilepsies which are resistant to standard treatments. They are also the most likely to die from epilepsy-related deaths.

During 2019/20, we set about building new collaborations to improve epilepsy treatment for autistic people.

At the end of July, ERUK formed a joint fellowship with Autistica to address the causes, prevention and clinical management of epilepsy in autistic people.

“Nobody told us that our son had a high chance of developing epilepsy. When he started having seizures two years ago, there was nobody that seemed to understand the two. We are desperate for more research and clinicians that know how to treat the two conditions.”

Lorraine, parent to child with autism

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

BRINGING CHARITIES TOGETHER TO INCREASE OUR UNDERSTANDING OF EPILEPSY We joined forces with Autistica and Young Epilepsy to commission a new study to better understand the prevalence and incidence of epilepsy in autism. This research will be used to create a paper in 2020, outlining the scientific evidence and scale of the issue in human, social and economic terms. Through gathering this evidence, we will be able to pinpoint potential areas where research is needed, and where collective action can be taken in order to make the most difference to people who are autistic and have epilepsy.

ERUK & AUTISTICA FELLOWSHIP AWARD In 2020 Dr Charlotte Tye, King’s College London was awarded a Fellowship Award for her study into brain-based predictors of autism in infants with epilepsy. Having both conditions is associated with poorer quality of life, shortened life expectancy and a higher likelihood of other mental and physical problems. The overlap between epilepsy and autism has been recognised for a long time, yet there is little research to understand why.

ERUK-FUNDED RESEARCH MAKING AN IMPACT This study will identify differences in brain development that will reveal more about shared characteristics between autism and epilepsy, informing early intervention for infants with epilepsy, at an age when treatment has considerable scope for success.

Dr Charlotte Tye

For many children with both conditions, seizures started very early in life.

By identifying similarities and differences in brain development between babies with epilepsy that go on to show autistic symptoms and those that don’t, Dr Tye’s study will inform approaches to early intervention that aim to improve longer-term quality of life.

Dr Tye and team will visit families of infants with epilepsy several times over the first two years of life, to measure behavioural and brain development.

They will use cutting-edge technology that enables these tests to be completed in the home, to reduce burden on families. The findings will be directly compared to those from large studies of typically developing babies and babies with older autistic siblings.

EMBRACING COMPLEXITY Due to the growing recognition that neurodevelopmental conditions often share symptoms and most people affected have more than one of these conditions, ERUK joined forces with other comorbidity charities to form the Embracing Complexity Coalition in May 2019.

The coalition, led by Autistica, released a report in May summarising the results of a survey of people living with neurodevelopmental conditions to stimulate further discussion and debate. A more integrated approach will be much more effective in improving outcomes for people with neurodevelopmental conditions, and we will work closely with the charities to achieve this.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

INFLUENCING FOR ACTION Our role as one of the leaders in epilepsy research provides us with opportunities to engage and influence a wide variety of organisations and institutes across academia, industry and government.

To achieve our aims it is also necessary to influence the wider environment within which epilepsy research takes place. We use our influencing and campaigning capacity to exert leverage where policy changes affect us uniquely or as a joint voice in partnership with others to create the best conditions in which scientific research can flourish.

UNDERSTANDING HOW WE FIT INTO THE HEALTH RESEARCH LANDSCAPE As a member of the AMRC we participated in its UK Health Research Analysis 2018 to provide an insight into charities’ contribution to research and identify new opportunities for collaboration and innovation.

In January 2020 the report was published providing the most comprehensive analysis of health research funding ever compiled. Charities, professional and public sector organisations contributed ÂŁ4.8 billion to support research to improve human health.

As an AMRC member, ERUK, along with other member charities, provide the largest proportion of public funding for multiple stages of the research process. We are only able to do this thanks to the dedication of our supporters.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

CALLING FOR URGENT ACTION TO PREVENT BREXIT-RELATED DEATHS In December 2018, it became apparent that in the event of serious drug shortages as a result of a no-deal Brexit, the Government had plans to use emergency powers to authorise pharmacists to overrule medical prescriptions. It is very concerning for people with epilepsy, many of whom are on other medications so any changes to their medication require careful management because of interactions between medicines.

ERUK, alongside other epilepsy charities, neurologists and MPs wrote to the Sunday Times to raise awareness of the issue regarding continuity of medicines. This resulted in an article in the paper reporting that, after epilepsy coalition intervention, the Serious Shortage Protocol for medicines will not apply to epilepsy.

Sadly a formal response from the government was never received so in 2019/20 we continued to campaign on this issue.

During 2019/20, alongside the epilepsy community, we called for urgent action to prevent Brexit-related epilepsy deaths. In November, an open letter, signed by senior leaders in epilepsy, was sent to the government. In the letter we asked the government to publish its no-deal Brexit ‘Yellowhammer’ papers with regard to the medicines sections so the public has an opportunity to be informed. Campaigning on this important issue will continue into 2020.

‘After 10 months of research and campaigning on medicines shortages, we are deeply concerned about the lack of openness and dismissal of real concerns from real people about the significant risks to lives.’

‘The real potential for any failure in mitigation of risk due to medicines shortages, linked to Brexit or otherwise, is unacceptable to our community.’

From the Sunday Times, 15th November 2019

“It took years to get just the right balance of medications to effectively manage my seizures. It’s incredibly stressful and worrying to know that all the progress I’ve now made could suddenly be taken away from me if I can’t get my usual prescription.”

Leanne

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

WE CAN’T DO THIS WITHOUT YOU

OUR COMMITTED AND REMARKABLE SUPPORTERS This year #TeamERUK was stronger than ever before, taking on countless sporting events and challenges, with groups all over the UK pulling together to support research into epilepsy. Donations ranged from children giving their pocket money to people leaving large legacies, safeguarding vital research of tomorrow.

To everyone who donated, ran, climbed, cycled, swam, hopped, skipped and jumped out of planes for our shared cause – thank you for being part of this powerful community working together to achieve a life free from epilepsy.

THE WONDERFUL

JUDE MONTH OF 10KS Jude ran consecutive 10Ks every day in August except one... when she took a day off to compete in the Yorkshire Three Peaks Challenge instead!

FELICITY SOUTH AMERICAN CYCLE

MEZZETTI FAMILY CHARITY FUNDRAISER OF THE YEAR We were delighted to see John and Lynne Mezzetti named Charity Fundraisers of the Year at the EDP Stars of Norfolk and Waveney Awards. The prize recognises their incredible dedication to fundraising for Epilepsy Research UK, in memory of their teenage daughter Ellen.

Felicity and her friend Tessa set off on one of the longest cycling challenges we’ve ever seen at ERUK – 6,500km up the west of South America from Chile to Peru.

LIB FEST The annual music festival in Witney is held in memory of Liberty and ERUK is very fortunate to be one of the charities supported each year by this wonderful event.

NATHAN MAN VS MOUNTAIN Long-term ERUK champion Nathan completed the gargantuan Welsh Man Vs Mountain event in under six hours, covering 22-mile course with 1,500 metres of ascent.

JENNY AND SCOTT LAND’S END TO JOHN O’GROATS CYCLE Jenny and Scott both cycled the famous 900+ mile route from Land’s End to John O’Groats.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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THE WONDERFULLY WEIRD SU BLACKWELL ARTWORK SKYDIVING SQUAD

Aimie, Amy, Andy, Darren, Mark, Nick, Paige and many more joined the Unofficial #TeamERUK Skydiving Squad to support research!

GRAHAM FAMILY ANNUAL NE’ER DAY DIP The Graham and Smith families and supporters came together on New Year’s Day to brave the ice-cold waters of Loch Goil for their Annual Ne’er Day Dip in memory of Andrew and Lynn.

CHRIS DUNN VEALE CHALLENGE 856

Su Blackwell’s wonderful paper sculpture ‘The White House’ which was auctioned for over £900, with the proceeds to be donated to ERUK.

TEA IN THE MARQUEE ‘Tea in the Marquee’ celebrated the life of Morgan Christie who tragically passed away last year. A group of Morgan’s friends thought that a music festival would be the perfect way to remember Morgan as they had always gone to concerts and festivals together.

A massive £7,000 was raised by this incredible group of friends.

As part of his £10,000 fundraising target, Chris completed (a frankly ludicrous) NINE ultra-marathons over five months, clocking up a total of 856km. This colossal effort was all in memory of Chris’ good friend Jonny Everett, who sadly passed away due to epilepsy five years ago.

SINGING FOR SCIENCE TEN HANDS HIGH held an acoustic tribute show for Beverley Boulton.

GLEN MORAY MALE VOICE CHOIR kindly donated the proceeds from their packed show at St Giles’ Church, Elgin to ERUK. FLYNT reunited for one night only alongside other great artists to raise money for the Sophie Hannon Memorial Fund.

CLARE AND FRIENDS braved the winter cold to sing carols and raise funds for ERUK.

TRUSTEES’ REPORT AND FINANCIAL STATEMENTS YEAR ENDING 31ST MARCH 2020 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 31st March 2020 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).

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

OFFICERS OF THE CHARITY 2019 - 2020

ANNE COXON

BARRIE AKIN

HELEN CROSS PRESIDENT

MATTHEW WALKER CHAIR OF TRUSTEES

DAVID CAMERON

HARRY SALMON

JOHN HIRST

JUDITH SPENCER-GREGSON MARK RICHARDSON

RHYS THOMAS

SIMON LANYON

STEPHANIE SCHORGE

MARY GAVIGAN

SUE USISKIN

This year we welcomed Dr Anne Coxon, Ms Sue Usiskin and Professor Michael Cousin (incoming Chair of the Scientific Advisory Committee) to the Board of Trustees.

We thank outgoing Chair of the Scientific Advisory Committee, Professor Bruno Frenguelli for his significant contribution and stewardship.

MICHAEL COUSIN

BRUNO FRENGUELLI

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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 Dr Anne Coxon DPsych (appointed June 2019) Professor Michael Cousin BSc PhD (appointed June 2020) Professor Bruno Frenguelli BSc PhD (resigned March 2020) Ms Mary Gavigan BBS MA FCA Dr John Hirst CBE BA FCA MCT CCBIM DSc Mr Simon Lanyon Professor Mark Richardson MA BMBCh MRCP PhD CCST FRCP Mr Harry Salmon BA Professor Stephanie Schorge BSc, PhD, SFHEA Ms Judith Spencer-Gregson FCA MSc Dr Rhys Thomas BSc, MBChB, MRCP, MSc, PhD Ms Sue Usiskin (resigned December 2020)

President

Professor Helen Cross MB ChB PhD FRCP(UK) FRCPCH

Chief Executive

Ms Maxine Smeaton MSc PGDip MInstF

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 and Company Secretary

A J Lutley, Springfield, Rookery Hill, Ashtead Park, Ashtead, Surrey, KT21 1HY

Registered and Head Office

Charity number 1100394 Company number 4873718 CAN Mezzanine, 7-14 Great Dover Street London SE1 4YR

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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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: • to promote, encourage and finance research into epilepsy and associated conditions and their underlying causes; • to promote and improve the treatment, care and welfare of persons affected by epilepsy and associated conditions; and • to advance the general education and understanding of the public concerning the nature and causes of epilepsy and associated conditions and the treatment thereof.

In shaping our objectives for the year and planning our activities, the trustees have considered the Charity Commission’s guidance on public benefit, including the guidance ‘public benefit: running a charity (PB2)’. The objectives set out in the charity’s business plan for the year are shaped by these aims with a view to funding an increasing programme of research, encouraging collaboration amongst researchers and raising awareness of the need for more funding for epilepsy research.

Achievement and performance

The Trustees are pleased with the progress being made to achieve and expand the mission of the charity. We refer you to pages 6-27 of this report where further information may be found on work undertaken this year.

Volunteers

We are grateful for the significant support we receive from the members of the Trustee Board and the Scientific Advisory Committee who all provide their skills and experience in order to further the objects of the charity.

Going concern

The Trustees are confident that whilst the pandemic has seriously impacted our income, this has not affected our going concern as we were holding unrestricted funds at 31 March of £2,483,244. The reserves policy has therefore proved to be adequate to enable Epilepsy Research UK to meet its commitments during the pandemic without any advertise impact on our research activities.

Plans for future periods

In October 2020, Epilepsy Research UK released the report ‘ALifeInterrupted – Shaping the Future of Research into Epilepsy’. The figures shared are stark; funding for epilepsy research lags considerably behind other neurological conditions affecting far smaller patient populations. The report also highlights the disruptive, interruptive impact of epilepsy and the need to engage directly with people with epilepsy to help shape the future of research.

In addition to the continued work in research funding and capacity building, we will be developing our SHAPE EPILEPSY RESEARCH NETWORK to involve people with epilepsy in in planning and prioritising research focus areas and leveraging our knowledge with key institutional funders and policy makers.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

Research grants in 2020 This year we awarded 10 research grants totalling £1,340,440 each one looking at a particular aspect of the cause, prevention or treatment of epilepsy.

Summary of research grants awarded PRINCIPAL INVESTIGATOR, TITLE INSTITUTION

AMOUNT

Dr Wessel Woldman University of Birmingham

Quantifying the effect of treatment using non-invasive recordings and computational modelling

£298,776

Dr Charlotte Tye King’s College London

Neural markers of emerging autism in infants with epilepsy Co-funded with Autistica Mental health treatment for children with epilepsy: outcomes for education, health and parents

£299,987

Volatile non-invasive biomarkers of epilepsy seizures (VIBES) study

£188,666

DNM1 Epileptic encephalopathy -mechanism and therapy Seeing inside: non-invasive brain mapping of epileptic activity (SINIMA)

£154,537

Dr Sophie Bennett UCL Great Ormond Street Institute of Child Health Professor Matthew Walker UCL Institute of Neurology Professor Michael Cousin University of Edinburgh Professor Khalid Hamandi Cardiff & Vale University Health Board and Cardiff University Dr Simon Keller University of Liverpool

Professor Richard Baines University of Manchester Dr Laura Mantoan Ritter King’s College London

Professor Andrew Trevelyan Newcastle University

Total grants awarded

£128,578

£165,055

Assessment of the mechanical properties of epileptogenic lesions using magnetic resonance elastography : a new diagnostic approach for people with epilepsy Targeting neuronal homeostasis to treat epilepsy

£28,802

Dissecting somatic mTOR pathway mosaicism in focal cortical dysplaisall A/B to develop minimally invasive screening tools and to test mTOR inhibitor efficacy in refractory epilepsy Multimodal telemetry of mouse behaviour: developing new tools for assessing epilepsy phenotypes and treatments

£30,073

£25,966

£20,000

£1,340,440

In addition, we are currently funding 31 other projects, approved in prior years, at institutes around the country, examples of which include investigating new methods of diagnosing and treating epilepsy such as gene therapies.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

Research value and impact

The Association of Medical Research Charities (AMRC) membership is the hallmark of quality research funding. It means that we fund highquality, peer-reviewed 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.

In the last five years we have invested almost £3.8 million on research grants and these have leveraged a further £21.2 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. This investment in epilepsy research demonstrates our ability to identify

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innovative research at an early stage that will ultimately benefit people with epilepsy.

Another indicator of the quality of the research we fund is the number of publications that arise from the work. A total of 205 journal publications have resulted from ERUK grants during the 2009 – 2019 period, 39 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 205 publications have been cited over 3,000 times.

Fundraising performance in 2019/20

Overall income from fundraising (excluding legacies) was £805,927 compared to that raised in 2018/19 of £812,873. The reduction in overall income is due to the exceptional amount of legacies received in 201819 of £1,784,801 compared to £1,312,711 in 2019-20.

During the year we concentrated on developing a fundraising strategy to engage our supporters in our plans for increasing our impact and reach whilst maintaining the level of income necessary to fund our research grants.

Better systems have been implemented to engage with our supporters, and cohesion between communications and fundraising teams is already starting to show benefits.

Our fundraising approach

Last year, 99% of all ERUK 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.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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 a range of places and 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. We employ, on a freelance basis, a trusts and foundations fundraiser for one day per week. This use of specialist support has proved to be cost effective.

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 reviewed our practices against the new guidance from the fundraising regulator and are satisfied we are compliant. We have had no complaints about our fundraising approach in the past year.

General Data Protection Regulation (GDPR)

We undertake regular reviews of our systems, processes and data to ensure we are GDPR compliant.

As we moved to home working mid-March due to COVID-19, we developed a plan to ensure we remained compliant. As part of this plan we worked with our external IT provider to install VPN licences to safeguard access to our donor database and stored all post in a fireproof, locked safe until the offices reopened.

Financial review

In 2019/20, our overall incoming resources were £2,255,094 and the costs of raising funds were £198,461 leaving £2,056,633 available for charitable activities. The total spent on charitable activities was £1,871,379. This is the second year when we have been in receipt of exceptional legacies. This year grant awards amounted to £1,340,440. Whilst recognising the legacy income in 2019/20, 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 2020/21 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 £2,962,503 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, need to ensure that funds are available to meet our commitments. Current deposit rates are very low and during the year the trustees agreed to place a further £1m in our low/medium risk portfolio that is managed by Sarasin & Partners, following initial investments of £0.5m in October 2016 and a further £0.5m in September 2018. Investments have performed well against the investment objectives.

However, there was a decrease in value in March 2020 as a result of COVID-19 affecting investment values globally.

Structure, governance and management Governing document

Epilepsy Research UK (ERUK) is a charitable company

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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.

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 reappointment. 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

Following a governance review undertaken by Cass Business School this year, Epilepsy Research UK will aim to standardise its induction process for new trustees, so each new trustee receives a job description outlining a trustee’s responsibilities and is briefed 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.

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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 Supervisory Committee comprising 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.

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 experts by experience. 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 Supervisory 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 Annual Report and Financial Statements - year ended 31 March 2020

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 2020/21 business plan, with identified risks embedded in our strategic and operational processes. Governance of the Group’s 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):

not absolute assurance that major risks have been adequately managed. Overall, we are confident our risk position remains within acceptable levels.

Key financial and non-financial risks are monitored throughout the year and reported to the Trustees on a quarterly basis.

The impact of COVID-19 is outlined in the post balance event note 21.

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 1. Business plan and budget which has regular Board maintain free reserves to manage the risks to which of Trustees oversight the Charity is exposed in the course of its business, 2. Financial controls and policies (such as reserves, including, but not limited to, safeguarding against investment policies and ethical fundraising) the volatility of voluntary income. The trustees 3. Disaster recovery and business continuity planning initially considered that in order to meet these 4. Strategic partnership work. needs, and to operate effectively, the Charity needs reserves of around £650,000. However, in view of There are three key strategic risks which cover both the financial implications of COVID-19, free reserves external and internal risks: at 31 March 2020 have been increased to £988,645.

Due to the exceptional legacy donations for 2017/18 Risk 1: Insufficient resources to deliver the 2020/21 and 2018/19 it was agreed that in order to safeguard strategy funds for the 2020/2021 grant rounds, £1,494,579 Risk 2: We do not have the right trustees, would be allocated to a designated research reserve. management, employee and volunteer capacity or Designating funds will enable to the charity to capability Risk 3: Our actions or behaviour damages the charity focus on developing a sustainable fundraising plan and activities to support the development of the reputation with key stakeholders refreshed strategy.

The Board of Trustees are satisfied that the major Statement of trustees’ responsibilities risks have been identified and processes for The charity trustees (who are also the directors of addressing are in place. It is recognised that any Epilepsy Research UK for the purposes of company control systems can only provide reasonable but

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

law) are responsible for preparing a trustee annual report and financial statements in accordance with applicable law and United Kingdom Generally Accepted Accounting Practice.

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 The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charitable company and to enable them to ensure that 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

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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.

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: • there is no relevant information, being information needed by the auditor in connection with preparing their report, of which the auditor is unaware, and • the 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

Professor Matthew Walker Chair, Board of Trustees

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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 2020 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).

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 This report is made solely to the Charity’s trustees, financial statements section of our report. We are as a body, in accordance with section 144 of the independent of the Charity in accordance with the Charities Act 2011 and the regulations made under ethical requirements that are relevant to our audit section 154 of that Act. Our audit work has been of the financial statements in the UK, including the undertaken so that we might state to the charity’s FRC’s Ethical Standard and we have fulfilled our other trustees those matters we are required to state to ethical responsibilities in accordance with these them in an auditor’s report and for no other purpose. requirements. We believe that the audit evidence To the fullest extent permitted by law, we do not we have obtained is sufficient and appropriate to accept or assume responsibility to anyone other than provide a basis for our opinion. the Charity’s trustees as a body, for our audit work, for this report, or for the opinions we have formed.

Conclusions relating to going concern We have nothing to report in respect of the following matters in relation to which the ISA (UK) requires us Opinion on financial statements to report to you where.

In our opinion the financial statements: • give a true and fair view of the state of the Charity’s affairs as at 31st March 2020 and of its income and The trustees’ use of the going concern basis of

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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’ 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 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

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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; • we 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.

Responsibilities of trustees

As explained more fully in the Trustees’ Responsibilities Statement, set out on page 38-39, 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.

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Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

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

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 regulation made under section 154 of that Act. 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.frc.org.uk. This description forms part of our auditor’s report.

A Davies ACA (Senior Statutory Auditor) F A Magee & Company, Chartered Accountants & Statutory Auditors Wimborne House, 4-6 Pump Lane, Hayes, UB3 3NB

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

43

Statement of Financial Activities (including the Income & Expenditure Account) for the year ended 31st March 2020

Unrestricted Funds £

Restricted Funds £

Total Funds 2020 £

Total Funds 2019 £

2,073,040 87,704 28,598 48,752

17,000 -

2,090,040 87,704 28,598 48,752

2,571,640 18,067 26,034 36,348

2,238,094

17,000

2,255,094

2,652,089

5

198,461

-

198,461

162,488

6 7

1,320,440 529,565 1,850,005

20,000 1,374 21,374

1,340,440 530,939 1,871,379

1,024,525 456,777 1,481,302

2,048,466

21,374

2,069,840

1,643,790

(67,948)

-

(67,948)

16,592

121,680

(4,374)

117,306

1,024,891

17,000

(17,000)

-

-

138,680

(21,374)

117,306

1,024,891

2,344,544

28,334

2,372,878

1,347,987

2,483,224

6,960

2,490,184

2,372,878

Note

Income from: Donations and legacies Charitable activities research grants not required Other trading activities Investments

2 6 3 4

Total Income Expenditure on: Raising Funds Charitable Activities: Research grants committed Other charitable activities Total Charitable Activities Total Expenditure Net (Loss)/Gain on investments

11

Net Income/(Expenditure) for the year Transfers between funds

16

Net Movement in Funds for the year Reconciliation of Funds: Total funds brought forward on 1 April 2019 Total funds carried forward at 31 March 2020

17

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

The notes on pages 46 to 59 form part of these financial statements.

44

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

Balance Sheet at 31st March 2020

Fixed Assets

Note

2020 ÂŁ

2019 ÂŁ

11

2,016,232

1,056,210

2,016,232

1,056,210

Current Assets Debtors Cash at bank and in hand

12 13

1,131,994 2,962,503 4,094,497

984,700 3,373,391 4,358,091

Creditors: Amounts falling due within one year

14

(1,553,440)

(1,777,291)

Net Current Assets

2,541,057

2,580,800

Total Assets less Current Liabilities

4,557,289

3,637,010

14

(2,067,105) 2,490,184

(1,264,132) 2,372,878

15 15

1,494,579 988,645 2,483,224

1,690,000 654,544 2,344,544

16

6,960 2,490,184

28,334

Creditors: Amounts falling due within one year Total Net Assets The Funds of the Charity Unrestricted Funds Designated Funds General Fund

Restricted Funds Total Charity Funds

The financial statements were approved by the Board of Trustees on 16 December 2020 and signed on its behalf by:

Prof Matthew Walker Judith Spencer-Gregson FCA Chair Treasurer

The notes on pages 46 to 59 form part of these financial statements.

2,372,878

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

45

Statement of Cash Flows for the year ended 31st March 2020 Note

2020 ÂŁ

2019 ÂŁ

19

568,330

1,282,515

(1,000,000) (27,970)

200,000 (700,000) (20,126)

48,752

36,286

Net Cash (Outflow) Investing Activities

(979,218)

(483,840)

(Decrease)/Increase in Cash and Cash Equivalents in the Year

(410,888)

798,675

Cash and Cash Equivalents at the Beginning of the Year

3,373,391

2,574,716

2,962,503

3,373,391

Cash Inflow/(Outflow) from Operating Activities Cash Flows from Investing Activities Sale of investments Net purchase of investments Income reinvested Dividends and interest received

Cash and Cash Equivalents at the End of the Year

46

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

Notes

forming part of the financial statements 1 Accounting policies

running costs of the organisation and it is written off in the year of purchase.

c) Incoming resources Voluntary income and donations are taken into the accounts when received. The income from fundraising ventures is shown gross, with the associated costs included in fundraising costs.

Legacy income is included in the Statement of Financial Activities to the extent of cash received a) Basis of preparation or a clear indication regarding amounts receivable The financial statements have been prepared in has been given by executors. No endowments accordance with Accounting and Reporting by have been received in the period.

Charities: Statement of Recommended Practice

applicable to charities preparing their accounts d) Resources expended in accordance with the Financial Reporting All expenses are accounted for on an accruals Standard applicable in the UK and Republic of basis. Wherever possible costs are allocated Ireland (FRS 102) (effective 1 January 2015) – directly to the appropriate activity; other Charities SORP (FRS 102), the Financial Reporting costs common to all activities are apportioned Standard applicable in the UK and Republic of between those activities based on the Ireland (FRS 102) and the Companies Act 2006. proportion of staff time spent during each year in

connection with each activity (see note 8).

Epilepsy Research UK meets the definition of a

public benefit entity under FRS 102. Assets and Fundraising expenditure comprises costs liabilities are initially recognised at historical cost incurred in asking people and organisations to or transaction value unless otherwise stated in donate to the charity’s work. This includes the the relevant accounting policy note(s). cost of advertising for donations and the staging

of special fundraising events.

Reconciliation with previous Generally Accepted

Accounting Practice: in preparing the accounts, Expenditure incurred in connection with the the trustees have considered whether in applying specific objects of the charity is included under the accounting policies required by FRS 102 and the heading Charitable Activities. the Charities SORP FRS 102 the restatement of comparative items was required. e) Donated services

Donated services are recognised as income when b) Fixed assets the receipt of economic benefit from the use Investments: The charity holds investments and by the charity of the item is probable and that these have been valued at market value as at the economic benefit can be measured reliably. year end.

Office equipment: The trustees consider the f) Interest receivable provision of all office equipment to be part of the Interest on funds held on deposit is included

The charity is a company limited by guarantee and has no share capital. In the event of the charity being wound up the liability in respect of the guarantee is limited to ÂŁ1 per member of the charity.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

when receivable and the amount can be measured reliably

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 shortterm 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 The charity has no current operating leases.

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.

Restricted funds are funds which are to be used in accordance with specific restrictions

47

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.

48

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

2 Donations and Legacies

Charitable trusts In memoriam donations Other donations Fundraising events Legacies

Unrestricted Funds £

Restricted Funds £

Total 2020 £

Total 2019 £

83,399 95,353 287,569 294,008 1,312,711

17,000 -

100,399 95,353 287,569 294,008 1,312,711

17,488 112,486 239,446 417,419 1,784,801

2,073,040

17,000

2,090,040

2,571,640

Income from fundraising events arises from events organised by the charity and its supporters. Online advertising to the value of £82,064 (2019 £90,137) 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

Sale of Christmas cards

Unrestricted Funds £

Restricted Funds £

Total 2020 £

Total 2019 £

28,598

-

28,598

26,034

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

49

4 Investment Income

Realised gain on investments Dividend and investment income Interest on deposits

Unrestricted Funds £

Restricted Funds £

Total 2020 £

Total 2019 £

37,587 11,165

-

37,587 11,165

62 26,523 9,763

48,752

-

48,752

36,348

Unrestricted Funds £

Restricted Funds £

Total 2020 £

Total 2019 £

99,517 70,491 22,985 5,468

-

99,517 70,491 22,985 5,468

70,362 57,797 30,683 3,646

198,461

-

198,461

162,488

2020 £

2019 £

2,990,146 1,340,440 (87,704) (660,645)

2,503,241 1,024,525 (18,067) (519,553)

3,582,237

2,990,146

5 Costs of generating funds

Direct fundraising Staff costs Other overhead expenses Governance costs

6 Research Grants Committed

Committed as at 31 March 2019 Authorised during year (see Trustees’ report) No longer required Paid in year Committed as at 31 March 2020

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 Trustee report on page 34. Details of all grants awarded are available on the website: www.epilepsyresearch.org.uk. Research grants no longer required relate to projects that were completed without the original total grant being spent.

50

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

7 Other Charitable Activities

Staff costs Scientific workshop Research network Research prizes Research Activities Overhead expenses Governance costs

Unrestricted Funds £

Restricted Funds £

Total 2020 £

Total 2019 £

246,513 18,503 165,907 80,285 18,357

1,374 -

246,513 18,503 1,374 165,907 80,285

186,566 31,163 11,037 1,661 119,114 95,845

-

18,357

11,391

529,565

1,374

530,939

456,777

Unrestricted Funds £

Restricted Funds £

Total 2019 £

Total 2018 £

186,566 31,163 11,037 119,114 95,845 11,391

1,661 -

186,566 31,163 11,037 1,661 119,114 95,845 11,391

197,230 780 1,204 113,022 61,878 15,029

455,116

1,661

456,777

389,143

Other Charitable Activities 2019

Staff costs Scientific workshop Research network Research prizes Research Activities Overhead expenses Governance costs

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

51

8 Support and Governance costs

Staff costs Office rent and facilities Office running costs IT and bank charges Investment fees Audit Trustee meetings & expenses Legal & professional fees

Support Costs £

Governance Costs £

Total 2020 £

Total 2019 £

32,780 31,389 28,983 10,118 -

8,313 4,620

8,313 32,780 31,389 28,983 10,118 4,620

14,103 23,397 70,933 17,939 6,898 4,880

2,327 8,565

2,327 8,565

2,609 806

103,270

23,825

127,095

141,565

22,985 80,285

5,468 18,357

28,453 98,642

22.95% 77.05%

103,270

23,825

127,095

100%

Support Costs £

Governance Costs £

Total 2019 £

Total 2018 £

8,470 23,397 69,824 17,939 6,898 -

5,633 1,109 4,880 2,609 806

14,103 23,397 70,933 17,939 6,898 4,880 2,609 806

8,912 19,651 47,306 25,389 4,005 2,922 4,549

126,528

15,037

141,565

112,734

30,683 95,845

3,646 11,391

34,329 107,236

24.25% 75.75%

126,528

15,037

141,565

100%

Basis of Allocation Allocated to fundraising costs Allocated to charitable activities

Support and Governance costs 2019

Staff costs Office rent and facilities Office running costs IT and bank charges Investment fees Audit Trustee meetings & expenses Legal & professional fees

Basis of Allocation Allocated to fundraising costs Allocated to charitable activities

52

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

9 Net incoming resources are after charging the following:

Operating leases - office rental and office machinery Auditors’ remuneration Payroll fees

2020 £

2019 £

4,620 1,136

5,464 4,880 860

2020 £

2019 £

287,095 26,502 11,720

219,295 20,384 10,317

325,317

249,996

10 Staff Costs

Salaries Social security costs Pension costs

One employee (2019/20) earned between £70,001 and £80,000 No employee (2018/19) earned between £70,001 and £80,000 The average number of full-time equivalent employees (including part-time staff) during the year as follows:

Charitable activities Fundraising Governance

2020

2019

5.7 1.8 0.1

3.0 1.9 0.1

7.6

5.0

The trustees do not receive any remuneration for their duties but during the year 1 trustee received expenses for travelling to meetings amounting to £1,459 (2019: £769 – 5 Trustees). 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.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

53

11 Investments 2020 £

2019 £

1,056,210 1,000,000 (9,617) 37,587

519,430 700,000 (200,000) (6,398) 26,523

2,084,180

1,039,555

Net (loss)/gain realised and unrealised Market value 31 March 2020

(67,948) 2,016,232

16,655 1,056,210

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

1,306,439 709,793

1,056,199 11

2,016,232

1,056,210

2020 £

2019 £

11,491 1,120,503

23,868 960,832

1,131,994

984,700

Market value 1 April 2019 Acquisitions Sales Investment charges Income reinvested

12 Debtors

Gift Aid recoverable Prepayments & accrued income

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.

54

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

13 Cash Movements

Balance at 31 March 2019 Cash inflow/(outflow) flow Balance as at 31 March 2020

Cash Deposits £

Cash at Bank £

Total

1,852,819 805,311

1,520,572 (1,216,199)

3,373,391 (410,888)

2,658,130

304,373

2,962,503

£

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.

Cash Movements 2019

Balance at 31 March 2018 Cash inflow/(outflow) flow Balance as at 31 March 2019

Cash Deposits £

Cash at Bank £

Total

1,343,935 508,884

1,230,781 289,791

2,574,716 798,675

1,852,819

1,520,572

3,373,391

2020 £

2019 £

1,515,132 9,075 29,233 1,553,440 2,067,105 3,620,545

1,726,014 21,779 29,498 1,777,291 1,264,132 3,041,423

£

14 Liabilities

Research grants not yet claimed Accruals Other creditors Due within 12 months Research grants due after 12 months

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 Annual Report and Financial Statements - year ended 31 March 2020

55

15 Unrestricted Funds These represent amounts expendable at the discretion of the trustees. The balance of the charity’s resources represents free reserves 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 1 April 2019 Net incoming resources Transfer between funds Balance as at 31 March 2020

Designated Research Fund £

General Fund

Total

£

£

1,690,000 (195,421)

654,544 138,680 195,421

2,344,544 138,680 -

1,494,579

988,645

2,483,224

A total of 3 grants were awarded from designated funds amounting to £518,653, plus an amount of £323,232 was transferred to designated funds to cover possible cost extensions to current grants due to COVID-19.

Unrestricted Funds 2019

Balance as at 1 April 2018 Net incoming resources Transfer between funds Balance as at 31 March 2019

Designated Research Fund £

General Fund

Total

£

£

768,000 922,000

549,992 1,026,552 (922,000)

1,317,992 1,026,552 -

1,690,000

654,544

2,344,544

56

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

16 Restricted Funds

Research Grants Intercapital prize

1 April 2019 £

Incoming Resources £

Resources Transfers to Expended Unrestricted £ £

31 March 2020 £

28,334

17,000 -

(21,374)

(17,000) -

6,960

28,334

17,000

(21,374)

(17,000)

6,960

£20,000 was awarded from the Intercapital Prize as the Céline Newman Bursary to a research project at Newcastle University (as identified in the 2019/20 grant round). The remaining funds will be restricted to the Céline Newman Basic Science Prize awarded each year at the ILAE annual conference.

Restricted Funds 2019

Intercapital prize

1 April 2018 £

Incoming Resources £

Resources Expended £

31 March 2019 £

29,995

-

(1,661)

28,334

29,995

-

(1,661)

28,334

Unrestricted Funds £

Restricted Funds £

Total Funds £

6,103,769 (1,553,440) (2,067,105)

6,960 -

6,110,729 (1,553,440) (2,067,105)

2,483,224

6,960

2,490,184

Unrestricted Funds £

Restricted Funds £

Total Funds £

5,385,967 (1,777,291) (1,264,132)

28,334 -

5,414,301 (1,777,291) (1,264,132)

2,344,544

28,334

2,372,878

17 Analysis of Net Assets between Funds

Total Assets Current liabilities Creditors falling due after more than 1 year

Analysis of Net Assets between Funds 2019

Total Assets Current liabilities Creditors falling due after more than 1 year

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

57

18 Related Party Transactions 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 the 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. Grants awarded in March 2020 included £188,666 to University College, London for a grant to Professor Matthew Walker, and £154,537 to University of Edinburgh towards a grant to Professor Michael Cousin. A payment of £10,861 was also made to University College London towards a grant to Professor Stephanie Schorge. This grant was approved prior to Professor Schorge’s appointment as a trustee.

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

Net movement in funds Deduct Investment income shown in investing activities Add/Deduct investment (loss)/gain (Increase) in debtors (Decrease)/Increase in creditors due within 1 year (Decrease)/Increase in creditors due after more than 1 year Net cash used in operating activities

2020 £

2019 £

117,306 (48,752) 67,948 (147,294) (223,851) 802,973

1,024,891 (36,348) (16,592) (193,601) 516,501 (12,336)

568,330

1,282,515

58

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

20 Post Balance Sheet Events

As a consequence of the COVID-19 pandemic the fundraising activities and income of the charity have been significantly reduced since 1 April 2020. Research activities in connection with grants awarded in prior years have been affected as institutions were closed during lock down in March. Research activities have subsequently begun to resume, although at reduced capacity due to institutions limiting the number of scientists able to work at their premises.

The designated funds balance of £1,494,579 as at 31 March 2020 (see note 15) are for future research grants.

We are forecasting a 50% drop in income in 2020/21 but will be able to fund grants from this balance although this year we have taken the decision to fund only capacity-building fellowship awards.

Cash reserves currently cover 83% of the total grants committed to 2023 and are expected to increase during 2020/21 due to the receipt of accrued legacy income.

The value of our investment portfolio, whilst suffering a loss during 2019/20, has now recovered in value and was £2,139,615 at 31 October 2020.

As such, the trustees are confident that whilst the pandemic has seriously impacted our income, this has not affected our going concern as we were holding unrestricted funds at 31 March of £2,483,244. The reserves policy has therefore proved to be adequate to enable Epilepsy Research UK to meet its commitments during the pandemic without any adverse impact on our research activities.

In October 2020, Epilepsy Research UK released the report ‘ALifeInterrupted – Shaping the Future of Research into Epilepsy’. The figures shared are stark; funding for epilepsy research lags considerably behind other neurological conditions affecting far smaller patient populations. The report also highlights the disruptive, interruptive impact of epilepsy and the need to engage directly with people with epilepsy to help shape the future of research.

In addition to the continued work in research funding and capacity building, we will be developing our SHAPE EPILEPSY RESEARCH NETWORK to involve people with epilepsy in in planning and prioritising research focus areas and leveraging our knowledge with key institutional funders and policy makers.

Epilepsy Research UK Annual Report and Financial Statements - year ended 31 March 2020

59

21 Statement of Financial Activity for the year ended 31 March 2019 (prior year) (Including the Income & Expenditure Account)

Note

Total Funds 2019

Unrestricted Funds £

Restricted Funds £

2,571,640 18,067 26,034 36,348

-

2,571,640 18,067 26,034 36,348

2,652,089

-

2,652,089

5

162,488

-

162,488

6 7

1,024,525 455,116 1,479,641

1,661 1,661

1,024,525 456,777 1,481,302

1,642,129

1,661

1,643,790

16,592

-

16,592

Net Income/(Expenditure) for the year

1,026,552

(1,661)

1,024,891

Net Movement in Funds for the year

1,026,552

(1,661)

1,024,891

Reconciliation of Funds: Total funds brought forward on 1 April 2018

1,317,992

29,995

1,347,987

2,344,544

28,334

2,372,878

Income from: Donations and legacies Charitable activities research grants not required Other trading activities Investments

2 6 3 4

Total Income Expenditure on: Raising Funds Charitable Activities: Research grants committed Other charitable activities Total Charitable Activities Total Expenditure Net Gain/(Loss) on investments

Total funds carried forward at 31 March 2019

11

17

£

Epilepsy Research UK CAN Mezzanine 7-14 Great Dover Street London SE1 4YR T 020 3096 7887 E info@eruk.org.uk epilepsyresearch.org.uk A company limited by guarantee Registered in England number 4873718 Registered charity number 1100394