Driving research inspiring collaboration transforming lives Annual Review 2018 Contents Foreword

Professor Matthew Walker Foreword Chair of Trustees remains one of the commonest serious neurological conditions with about one in twenty people developing epilepsy in their lives. Although many have their epilepsy controlled with medication, about one third of people with epilepsy continue to have despite optimum treatment, and unfortunately that has not changed significantly over the last few decades, despite the availability of many new antiepileptic drugs. People with drug-resistant epilepsy live with not only unpredictable seizures but also increased rates of depression, social isolation, and unemployment. There is also an increased mortality rate and a risk of sudden unexpected death.

Despite the high prevalence of this potentially devastating disorder, research into the causes, diagnosis and treatment of epilepsy remains chronically under- funded. This may partly stem from the stigma that epilepsy engenders, but also, in-between the seizures, people with epilepsy often appear well – epilepsy thus often remains a “hidden condition”. Epilepsy Research UK is a charity that is dedicated to funding research into Contents epilepsy with the mission of improving the lives of all people with epilepsy. Foreword 3 Epilepsy Research UK, however, aims to achieve more About epilepsy 4 than just funding, it aims to attract the best young scientists and clinicians and to encourage them to About Epilepsy Research UK 5 pursue a career in epilepsy research. We also aim to create a community of and dialogue between scientists, Driving research 6 clinicians and people whose lives have been touched by Inspiring collaboration 16 epilepsy in order that we support the best and most impactful epilepsy research. Transforming lives 20 On behalf of the trustees, I would like to thank our A good investment? 26 dedicated team in the ERUK office, the scientific advisory board and, most of all, our numerous Finance 28 supporters without whom none of this research would be possible. Governance 30 Professor Matthew Walker Chair of Trustees

2 3 About Epilepsy About Epilepsy Research UK

About epilepsy Epilepsy Research UK

Epilepsy is one of the most Epilepsy Research UK (ERUK) is the As well as funding research, we bring common neurological conditions in Epilepsy is one of only UK-based charity exclusively clinicians and scientists together for the most common technical workshops and scientific the world. There are approximately neurological conditions. dedicated to funding independent 600,000 people in the UK with a research into epilepsy. meetings at which we disseminate learning known diagnosis. This means and develop ideas for future innovations. Our mission is to drive investment into around 1 in every 100 people are We regularly join forces with partners who research, inspire collaboration across living with epilepsy. in are working with associated conditions to 1 103 clinical, scientific and academic disciplines, people in the UK have epilepsy. ensure our efforts are combined. We work The main symptom of epilepsy is repeated and transform the lives of people living in partnership with other epilepsy-related seizures that start in the brain, the effects with epilepsy and their families and carers. charities to share knowledge and skills and and impact of which vary depending on In the past year we invested over £1 million campaign for better treatments for people which part of the brain is affected. In 65 % in 12 projects ranging from basic science living with epilepsy. Over 65% of people do not know the of cases there is no known cause. and clinical research to patient data and cause of their epilepsy. The onset may be resources that will enable future research. at any age or stage of life. For some, it may Our projects and scientists are based be as a result of head injury, stroke or across the UK, from Exeter to Edinburgh brain tumour. 30 % – and the impact of their work is global. Whilst there are many drugs and of people with epilepsy live with therapies available, 30% of people live uncontrolled seizures that do not with uncontrolled seizures that do not respond to medication. respond to medication. The impact on families and carers can be significant if Every week in the UK: they face the challenge of managing round-the-clock care.

Shockingly, there are 21 epilepsy-related Over deaths in the UK every week. 600 people are diagnosed with epilepsy.

There are 21 epilepsy-related deaths.

4 5 Driving research Driving research

Driving research Our grant funding process

ERUK supports a wide portfolio of research that can be divided Epilepsy Research UK offers three types of research grant: into two broad streams: experimental studies of epilepsy, from fellowship awards (£250,000), project grants (£200,000) and laboratory research of the cellular and molecular mechanisms of pilot grants (£30,000). epilepsy, to novel diagnostics and treatments for epilepsy in the clinic, and more patient-focussed studies, for example on the Step Every year we run a competitive Step The SAC then rigorously impact of co-morbidities and antiepileptic drugs on quality of life. grant round that is open for reviews each full application, preliminary applications for ten taking into consideration the peer This research is funded after rigorous 1 weeks from mid-July until the 4 review comments. scrutiny of grant applications end of September. Applications in a multi-stage process that involves both are accepted from all areas of Step Finally, the SAC meets in March to experts on the Scientific Advisory epilepsy research, including basic recommend to the Board which Committee (SAC), external expert opinion, science and clinical research. applications should be funded. and, in the case of fellowships, involves a 5 This selection is typically made up three-panel interview. Through this Step In November, preliminary of a variety of fellowship, project process we can be assured of the quality of applications are shortlisted by our and pilot grants in epilepsy the proposal and the likelihood of delivery 2 Scientific Advisory Committee research, depending on what of novel insights into the causes, diagnosis, (SAC) – a panel of the UK’s leading funding is available. treatments and impact of epilepsy. neurologists, neuroscientists and expert epilepsy researchers. Our funded projects can be found all over the UK and are building epilepsy research Step Shortlisted applicants are then capacity in many universities and invited to submit a full application, hospitals. In addition to supporting the which is sent externally for research activities of established 3 independent consideration by academics and clinicians, our funding some of the world’s leading schemes, in particular our fellowships, are experts in epilepsy research. This encouraging the next generation of is a process known as peer review.* epilepsy scientists who will be able to take every £1 ERUK spends on research, our advantage of novel genomic, physiological scientists and clinicians can leverage an and imaging technology to deliver better additional £4.90 from other funding In 2018 we were able to fund 1 fellowship award, 7 projects grants outcomes for people with epilepsy. sources. This in itself is a testament to the and 4 pilot grants. This is the highest number of applications ever quality of the research that we identify to funded by ERUK. The research we fund is having fund, but that we can only do with your considerable impact. This can be support, and for which the SAC and I are * The smaller pilot grants follow a simpler single stage application process. Shortlisted measured through both the many extremely grateful. fellowship candidates are also interviewed. research publications that acknowledge our support, and in the additional funding Professor Bruno Frenguelli that our support enables; currently for Chair, Scientific Advisory Committee

6 7 Driving research Driving research

Current funding Grants awarded in 2018

We are We received 57 applications for the 2017/18 grant round. Following a currently funding: rigorous selection process, we were able to fund 1 fellowship grant, 7 project grants and 4 pilot grants. research projects at institutes and universities Study title Type of Institution Lead Amount Years of throughout the UK. award researcher funding 32 Surgical techniques to Fellowship Newcastle Mr Ashan improve control £173,924 2 grant University Jayasekera 3 Research areas funded after a brain tumour Vesicle reorganisation: Edinburgh Project University of Dr Vincenzo A new subcellular therapeutic £56,852 3 grant Leicester Marra 14 target for seizure prevention Predicting seizure occurrence Causes and Project King’s College Prof Mark using wearable device £149,372 2 diagnosis grant London Richardson 1 technology Newcastle Management of patients Royal London Project Dr Vasiliki with in Hospital, Barts £149,290 3 grant Tsirka 13 intensive care Health Treatment Imaging networks in the Project University of Dr Simon 5 brain to predict medication £73,220 1.5 grant Liverpool Keller Leeds Life-threatening seizure control

Can the relationship between 1 Project University Prof Kirill epilepsy and migraine help £149,931 2 grant College London Volynski identify therapeutic targets?

Absence epilepsy: Exploring Project University of Dr Jessica perineuronal nets as a new £149,633 3 Liverpool 1 grant Leeds Kwok 1 Manchester therapeutic target The Epilepsy Research UK Project University Prof Maria £47,000 2 Corsellis Brain Collection grant College London Thom Leicester 1 Do more experienced hospitals Birmingham Dr Tonny have improved outcomes in Pilot grant £5,000 1 (hospital) Veenith Birmingham status epilepticus?

2 Warwick 7 1 Electrical stimulation as a King’s College Dr David 5 potential treatment for juvenile Pilot grant £29,960 1 2 London Carmichael

A new role for epilepsy gene University of Prof Peter Pilot grant £20,000 1.5 1 TBC1D24 Oxford Oliver Oxford 2 Cardiff 3 Nicotine patch treatment King’s College 7 University College London for sleep-related hypermotor Pilot grant Prof Deb Pal £30,000 2 14 1 St George’s Hospital London London epilepsy 5 Kings College, London 1 Royal London St Barts Health

1 Exeter 8 9 Driving Research Driving Research

Focus on Unknown cause

Professor Kirill Volynski, from the relationship between seizures and Institute of Neurology at University migraine mechanisms, which may College London, is researching lead to new therapeutic targets for both whether the relationship between epilepsy and migraine. epilepsy and migraine can help identify new targets for antiepileptic drugs (AEDs).

“Epilepsy and migraine occur together more often than would be expected from chance: a diagnosis of epilepsy doubles the risk of migraine. The ‘aura’ of migraine is, however, very different from a seizure. Funding from ERUK is enabling us to investigate the enigmatic mechanisms that predispose cortical neuronal networks either to seizures or to a slowly propagating wave of inexcitability typical for migraine aura”. James Nelson has never discovered James Nelson has never discovered the cause of his epilepsy the cause of his epilepsy. He tells us Whilst some have a clear cause, his experience of developing the in 65% of cases there is no known reason condition and his hopes for profession but has an astute knowledge I may well be on medication for the rest of for the development of the condition. my life and the deterioration of my advances in research. of all things medical! An appointment However, epilepsy and migraine exhibit with my GP was made and I further memory is worrying but as my wonderful substantial similarities: both conditions are “I first developed a mild form of epilepsy embarked on a lifetime of scans, tests neurologist has mentioned to me, the episodic, several antiepileptic drugs are aged 16 whilst at school. Like the vast and consultant meetings. advances in technology and research are effective in migraine treatment, and both majority of the population, I had no idea in constant development; in 5 years’ time, I All of my investigations, scans and tests seizures and ‘migraine headaches’ can be what the word signified and what the may be able to have my complex-partial have shown my brain to be normal and induced by brain trauma. In addition, condition was. I ignored it for some time, seizures eliminated. Who knows?” herein lies the problem. In my case, like mutations of the same genes can lead thinking it might have been due to an either to epilepsy or to a severe form of 65% of people diagnosed with epilepsy, increase in A-level studies and an active migraine with aura. So why is it that the there is no known cause. I was offered lifestyle. These strange, indescribable excessive firing of neurons in some people surgery in more recent years but the feelings weren’t occurring every day, so I leads to epilepsy, and in others to the aura chances of success were relatively low and just brushed it off. I arrived home from associated with some forms of migraine? the danger of infection relatively high. I school one day and casually mentioned it decided against it. In 65 % In this project Professor Kirill Volynski to my mum, who immediately diagnosed of cases of epilepsy there and colleagues aim to understand the the condition. She’s not in the medical is no known cause.

10 11 Driving Research Driving Research

Focus on Uncontrolled seizures

Dr Simon Keller from the University of Liverpool tells us about his work in Uncontrolled seizures have been a research priority for ERUK since the understanding brain networks in those with epilepsy to see how the charity began. Research funded by ERUK into paediatric epilepsy surgery different parts of the brain are connected. and neuroimaging has led to crucial developments in surgical techniques. These techniques have benefitted patients such as Rachel Christian, “Being able to predict whether a patient whose seizures were not controlled by AEDs. with epilepsy will respond to antiepileptic drug (AED) therapy will increase the Nick Christian has first-hand experience likelihood of bringing seizures under 30 % of how research can change lives. control sooner, through an earlier of people with epilepsy live with His daughter Rachel, now 16, was first exploration of alternative or adjunctive uncontrolled seizures that do not diagnosed with epilepsy at the age treatments. Imaging the brain’s respond to medication. of three. structural and functional networks may “We started noticing that Rachel was offer that possibility”. having periods where she went The reasons why treatment fails in some completely vacant and would tense up patients are unknown, and there is and almost shut down. These absences currently no way of predicting which varied in duration from a few seconds to as patients will not respond to treatment. long as 10 minutes, during which time she This often means patients are required to would lose her hearing, speech and trial numerous medications for months at awareness. If she was in the midst of doing a time, without success. something she would fall over or just curl up into a ball. As a result she required Nick Christian and his daughter Rachel Dr Keller is investigating brain networks in constant supervision for fear that she those with epilepsy to see how the would have a seizure and injure herself. different parts of the brain are connected. In February 2010 a piece of tissue the size This work seeks to identify reliable Rachel was diagnosed with epilepsy at the of a 20 pence piece was removed from non-invasive brain imaging biomarkers of age of three and put on medication. Some Rachel’s brain and we saw a dramatic and drugs made her puffy and bloated; others instant transformation in her. Since her AED treatment. The hope is that the Dr Simon Keller from made her slow and confused, but they surgery Rachel has come off all her findings will enable us to predict, at the the University of Liverpool didn’t stop the almost daily seizures which medication and hasn’t had a seizure since. point of diagnosis, which patients will not hampered her development. respond to this treatment. This may lead Rachel’s successful operation was ground to earlier exploration of alternative or AED therapy is the first line of treatment Unfortunately, she was one of the 30% breaking and only possible because of adjunctive treatments, such as surgery, for for someone newly diagnosed with of people with epilepsy who live with research partly funded by Epilepsy these patients, to bring their seizures epilepsy. However, it fails to control seizures uncontrolled seizures, but luckily for us, Research UK, which has led to advances in under control sooner. in over 30% of people with epilepsy. surgery was an option. neuroimaging and surgical techniques.”

12 13 Driving Research Driving Research

Focus on The Trafford family Preventing deaths share their story of the sudden loss of Professor Mark Richardson, from King’s College London, tells us about his their son, Hector. work in predicting seizure occurrence using wearable device technology. “Hector was “Living with epilepsy involves living with smartwatch device that records diagnosed the uncertainty about when the next movement and heart rate. The researchers with absences seizure will happen. Research work has hope that outcomes from this study will when he was been going on for nearly 30 years, to find enable seizure forecasting within the next 10 and at aged ways to ‘forecast’ when an individual few years. This, in turn, may help people 12 had his first person will have their next seizure. with epilepsy to reduce their risk factors tonic-clonic Excitingly, some fantastic progress has for life-threatening epilepsy, such as seizure. We never managed to control been made in the last few years. We hope SUDEP (sudden unexpected death either his absence seizures or his to build on this progress, to find a way to in epilepsy). epilepsy with drugs. He was on his forecast seizures using the latest fourth set of medication, but nothing Professor Richardson’s project has been generation of home EEG and worked. At his worst he had one fit a supported by our memorial funds. Our smartwatches. We hope to see seizure week and sometimes there were heartfelt thanks go to all our memorial forecasting become a reality within the gaps of 4 or 5 weeks. Without us really fund supporters for their tremendous next few years.” understanding, he fell into a higher commitment to providing hope for others risk category for SUDEP, a young Uncontrolled seizures are one of the most for the future. Professor Mark Richardson, male with uncontrolled seizures. difficult and dangerous aspects of epilepsy from King’s College London and can increase the risk of death. This Hector was 13 when he had an project aims to find a way to forecast epileptic seizure just a few metres seizures using the latest generation of EEG away from us but in a different and smartwatches. Participants will be room. We don’t know exactly what asked to give information about sleep, happened, but when we found stress and medication, and will record him some minutes later he their own EEG at home for 10 minutes, wasn’t breathing.” twice every day. They will also wear a There are over 21 epilepsy-related deaths a week in the UK of which There are half are due to SUDEP. SUDEP is given as a cause of death when a person with epilepsy dies suddenly and prematurely and no other 21 cause is found. epilepsy-related deaths every week

14 15 Inspiring collaboration Inspiring collaboration

Inspiring collaboration Céline Stephanie Newman

Something incredible happens Researchers bring news of their recent “Our beautiful daughter Céline was her ups and downs, she was always popular when you bring together findings and ongoing projects, whilst eight months old when she started with both our friends and hers. supporters share their motivation for people who share a common to have noticeable seizures. On her One early morning in her hall of residence getting involved with the charity and their overall purpose. first birthday, we received the news far away in Berkeley, CA, where she lived hopes for how research will improve the that she had tuberous sclerosis. Like while studying in San Francisco, Céline That’s why at Epilepsy Research UK we quality of life for people living with epilepsy. everyone who has a child with passed away, having suffered an acute host specialist workshops and other Recent recipients of the ERUK Céline special needs, or a sick child, our nocturnal fit. events that connect clinicians, Newman Prize for Epilepsy Research: family life changed drastically, as we Céline was bilingual French-English, and researchers, scientists, patients and were doing what we could to give supporters as they share knowledge, 2017 Dr Andreas Lieb, although she had a very troubled first nine our daughter the best quality of life exchange ideas and build relationships. University College years of life, during the following sixteen possible. Anxiety, questions, worries We know that by doing this, we will London years, she packed in more than many were from then onwards our daily, drive further innovations and greater Closed-loop gene therapy investment in research into epilepsy. for intractable focal routine life. epilepsy - a potential We have many tactics for undertaking this As a family, we just had to adapt. At the future gene therapy that can detect and work, whether through regional ‘Meet the age of three, she was on skis; age four, she block seizures at a particular stage. Researcher’ events or expert workshops. was swimming like a fish. At the age of We also know that inspiring collaboration 2016 Dr Ryley Parrish, nine, Céline had brain surgery at Great helps many of our supporters to feel part Newcastle University Ormond Street Hospital to remove as of a better future for those affected by many of the lesions as possible and the Homeostatic conflict in epilepsy. For the Newman family, funding results were extremely positive. As a family, cortical interneurons: a scientific prize in memory of their we started to holiday-travel far away, and evidence from daughter and working with us on a everything was geared towards Céline’s gene-expression studies Céline Stephanie Newman programme to promote Anglo-French intense love of nature… - looking at a particular class of nerve cells collaborations is a way of saying thank that help to resist seizure activity and how Her wonderful consultant at Great Ormond people do in a normal life span. She is with you for the research that their daughter they may hold clues to determining Street, the late Professor Brian Neville, had us at all times, laughing, travelling, benefitted from and to achieve something whether someone might develop epilepsy to convince her that she really could not go of which she would have been proud. enjoying life, and bringing happiness and following brain trauma. scuba-diving, and so she joined a shark joy to everyone and everything around her. hunting expedition trip in South Africa, Bringing regional researchers together 2015 Dr Vincent Magloire, This was Céline. As proud parents of such a where she helped the divers to prepare. We kick-started the year with the first of University College girl, who was able to benefit so much from our regional ‘Meet the Researcher’ Our last family trip together was an London the developments of research science, we unforgettable week in the Galapagos. Her evenings in Leeds, followed by another Differential roles of absolute dream come true. are very happy to have been involved with successful event in Newcastle. These somatic inhibition in support for the ERUK Céline Newman events offer a great opportunity to share interictal and ictal Céline took a lot, but she gave back so much Prize for Epilepsy Research.” experiences between our supporters and discharges. more. With her smile, her humour and her funded researchers. bouncy and positive personality through all Paul and Fanette Newman

16 17 Inspiring collaboration Inspiring collaboration

The Epilepsy Research UK Corsellis Brain Looking ahead to our Collection – enabling future research expert workshop

“The Epilepsy Research UK and genetic methods can now be applied Corsellis Brain Collection is a to re-examine and re-classify these cases unique archive of brain samples to compare with modern surgical series. from patients with epilepsy, Over a two-year period, Professor Thom collected during the second half of and colleagues plan to restore this tissue collection, publish their findings and make Every two to three years, Epilepsy the last century. Restoration and Research UK brings together systematic cataloguing of this this archive available to researchers. The collection is particularly valuable because world-leading experts to address archive will facilitate modern day epilepsy post-mortem tissue samples are upcoming and important areas epilepsy research.” becoming scarce due to medical advances of epilepsy research at its expert Professor Maria Thom, UCL and changing attitudes. Furthermore, the workshop. Our March 2019 workshop archive was collected from people with will focus on neurodevelopmental Between 1950 and 1997, brain tissue epilepsy who were alive during the 19th disorders and epilepsy. samples from people with epilepsy who and 20th centuries, many with poorly Children with neurodevelopmental had died and had a post-mortem controlled seizures, before effective disorders often experience difficulties Professor John Corsellis examination were systematically studied medical and surgical treatments were with speech and language, motor by the eminent neuropathologist, available. This new collection will be skills, behaviour, memory, learning Professor John Corsellis. known as the Epilepsy Research UK and neurological functions. Many of Professor Corsellis published important Corsellis Brain Collection. them also have epilepsy that is studies based on what became known as extremely difficult to treat, and this the Corsellis Collection – one of the adds to an enormous burden of care foremost and largest brain tissue banks. and reduced quality of life. His epilepsy publications remain highly Workshop speakers and attendees regarded and relevant to this day, will develop an optimal research including seminal works on temporal lobe strategy for the development of more epilepsy and the brain alterations effective treatments and improved following status epilepticus. quality of life for children with University College London has recently neurodevelopmental disorders and acquired this historical tissue archive of epilepsy. Along with the UK’s leading Professor Maria Thom epilepsy cases, the restoration of which experts we will also be hearing from has been awarded £47,000 funding by Professor Ingrid Scheffer (University ERUK. Professor Maria Thom’s aim is to of Melbourne), Professor Dennis Lal restore, re-examine and catalogue the (Broad Institute of MIT and Harvard), Corsellis Epilepsy Collection for use in and Professor David Henshall (The modern research. Up-to-date pathology Royal College of Surgeons in Ireland).

18 19 Transforming lives Transforming lives

Transforming lives

As you can read in this report, the evidence is clear: scientific research How does sensory stimulation affect how Dr Jason Berwick, University of Sheffield transforms lives. But despite this knowledge, government investment in seizures spread across the brain? research remains under threat. Budget cuts, political uncertainty and Project grant: £147,758 Status: Completed reduced collaboration opportunities all have the potential to halt the progress of research into epilepsy. Dr Berwick and colleagues’ project has helped to illustrate how seizures spread and the role that At ERUK we are committed to sensory stimulation may play. ensuring that innovations and novel “This project enabled me to meet people with epilepsy as well as people who raise money for ERUK. ideas are advanced. It was a humbling experience. My job is to not let these people down.”

The scientists and clinicians you see Predicting risk of post-stroke epilepsy Dr Beate Diehl, National Hospital for Neurology profiled throughout this report are and Neurosurgery dedicated to finding ways to stop seizures, Pilot grant: £29,080 Status: Completed develop new therapies and ultimately find a cure. Their sole focus: to transform the lives of people living with epilepsy. Stroke is the most common cause of epilepsy in people over the age of 60. Using computerised Whether you give regularly or occasionally, analysis of the damage caused by a stroke and its extent and location, the researchers found that We know that, as one of our supporters, you have baked a cake or run a marathon, given people with post-stroke epilepsy had a considerably larger volume of damage than those without. want this too. And it is only through your your time or shared your story, made a gift In fact, the stroke was roughly double the size in people who developed post-stroke epilepsy. investment that we can safeguard the through a company or charitable trust, we Therefore, a larger stroke is a risk factor for developing post-stroke epilepsy.

progression of this vital work. are truly thankful. “I am very grateful that ERUK enabled us to investigate why some people with stroke develop epilepsy and others do not using a huge existing MRI database.”

Recent research Cutting-edge techniques to explore brain cell Dr Robert Wykes, Institute of Neurology, activity in epilepsy University College London

Investigating how epilepsy is triggered after a Professor Andrew Trevelyan, Fellowship award: £211,516 Status: Completed brain injury Newcastle University

Project grant: £147,334 Status: Completed Dr Wykes was among the first to apply optical imaging of neocortical network activity to study important questions in the field of epilepsy. Using a cutting-edge technique called fluorescence microscopy he examined the activity of large populations of brain cells to see how they behave In 65% of cases, the cause of a person’s epilepsy is not known. This recently completed project before and during a seizure. This method can now be used to help guide new treatments to explored how brain injuries (such as stroke or head injury) can lead to changes in how brain cells prevent seizures, and can also be applied to detect post-seizure spreading depression, which may function, causing epilepsy. This project may enable the development of future treatments and be important in the induction of sudden unexpected death in epilepsy (SUDEP). preventative measures. “The research fellowship awarded to me by ERUK has allowed me to develop a new technique for “Research is a slow process, that requires committed people who have been trained over many years. epilepsy research, consolidate and enhance my reputation in the epilepsy community, prepare me Only then can we start to make real inroads into understanding this difficult and complex condition. for the transition to independence, and secure further funding for epilepsy research. ERUK have This funding has enabled me to keep talented, key members of my research team.” been fantastic.”

20 21 Transforming lives Transforming lives

Transforming lives

We asked our supporters why they give to epilepsy research and we asked the researchers what they hope to achieve with the funding they receive.

“Epilepsy research is incredibly under-funded and has little “Through early genetic testing in children with seizures we can media attention and we hope that by raising funds we can choose the right medication, control seizures, give families start to change that a little at a time.” answers and help make the future less uncertain.” The Abba family Professor Sameer Zuberi, Royal Hospital for Children, Glasgow

“Pilot grant funding from ERUK has been invaluable in our goal to improve care of children with refractory epilepsy. We have been able to complete sufficient work to create a “A good friend’s son was born with severe epilepsy and was publication that will influence our field in the short-term.” having seizures from only a few weeks old. Six years on his epilepsy is still not under control. After being diagnosed with Professor Stefano Seri, Aston University epilepsy myself this has become more of an incentive to help fund vital research so one day everyone can live seizure free.”

Simon walking the Thames Path “Many individuals with epilepsy also suffer from depression, which adds to the burden of coping with seizures. Our research contributes to the understanding of the brain “Without research into the right medication, I would never mechanisms involved in depression in epilepsy and will help be able to do a trip like this. I spoke with so many people to identify those who may be more vulnerable to depression.” from different countries about epilepsy, most of whom Dr Jackie Foong, National Hospital for Neurology and Neurosurgery knew little about it.”

Francesca walking the Camino de Santiago

“My twin has lived with epilepsy for about 7 years now. We are still on the search for the root cause and await a complete “We as a family want to keep Elena’s memory alive by raising diagnosis in order to hopefully find ways to improve her life. vital funds for research which will help others.” I was so determined to do something amazing for her and Elena’s family other people with epilepsy.”

Annabel on running the Brighton Marathon

22 23 A massive thank you to everyone who has helped support our research.

24 25 A good investment? A good investment?

A good investment? Here’s all you need to know...

Research impact Quality hallmark – AMRC Using Researchfish – the independent research impact assessment Membership of the Association of Medical Research Charities (AMRC) is platform – we have tracked the successes of research we have the hallmark of quality and credibility. It means we fund high-quality funded in the last five years. research that is associated with a published research strategy and has a robust peer-review process and an exhaustive conflicts of interest policy. During this period we invested almost £3.5 million in research grants and these As members, our research procedures are Medical research charities contributed have leveraged a further £18.4 million in audited every five years to ensure they • £1.6 billion of research funding in the UK follow-on funding from other sources. meet the exacting membership standards. in 2017 For universities, government and other Every pound invested by Epilepsy funding bodies, AMRC membership is a • £13 billion in research in the UK since the Research UK has therefore generated a recognised indicator of quality. We also sector started collecting data in 2008 further £4.90 for epilepsy research. attend regular training alongside other • AMRC members fund nearly half Using Researchfish we can closely research charities to develop best practice of all publicly funded medical monitor the impact of our grants to approaches and share learning. research nationally ensure that your donations support the Here’s a summary of the investment highest quality research. Researchfish • Capital investments of £71 million were AMRC members make to improving enables our researchers to tell us where made in the UK by charities in 2017 health care: their findings have been disseminated • Over 17,000 researcher salaries were and the likely impact on future epilepsy Economic impact of research funded by medical research charities research. Often, the research we fund is • Every £1 invested in medical research in 2017 the first step in a long journey to delivers a return equivalent to around 25p developing vital new treatments. every year, for ever.

• Every £1 of public or charity investment in medical research is also associated with an additional £0.83-£1.07 of private sector R&D spend. This spill-over effect leads to a real annual rate of return on the investment of 15–18%.

• Combined, the total annual rate of return on public or charitable investment in £1 £4.90 medical research is 24-28%. Generated for epilepsy research

26 27 Finance Summary accounts

Finance Summary accounts Statement of Financial Activities (including the Income & Expenditure Account) for the year ended 31st March 2018. 2017–18 has been an unprecedented Income year, with Epilepsy Research UK investing over £1 million in 12 outstanding Unrestricted Restricted Total Funds Total Funds Funds (£) Funds (£) 2018 (£) 2017 (£) research studies. Income Our overall incoming resources were £2,227,790 Donations and legacies 2,139,553 5,000 2,144,553 1,250,991 due to an exceptional level of legacy income and a Charitable activities – research grants few generous bequests. This has enabled us to 30,065 – 30,065 104,454 not required increase our commitment to awarding research Other trading activities 29,962 – 29,962 31,438 grants by 64% compared with the previous year. Whilst recognising the income on a number of Investments 23,210 – 23,210 16,115 £781,620 £1,362,933 legacies will not give rise to realised funds for a Donations Legacies Total income 2,222,790 5,000 2,227,790 1,402,998 period of time, most of the surplus for the year has £23,210 £29,962 been allocated to a designated research reserve Investment Trading for awarding the coming year. income Expenditure

£30,065 Raising funds 240,907 – 240,907 299,202 Trustees’ statement Grants Charitable activities written back The financial information included in this report Research grants committed 1,029,182 5,000 1,034,182 629,980 is extracted and summarised from the accounts Other charitable activities 387,939 1,204 389,143 412,070 Expenditure of Epilepsy Research UK for the year ending Total charitable activities 1,417,121 6,204 1,423,325 1,042,050 31st March 2018. The summarised accounts may Total expenditure 1,658,028 6,204 1,664,232 1,341,252 not contain sufficient information for a full understanding of the financial affairs of the charity. For further information, the full annual Net (loss)/gains on investments (10,195) – (10,195) 12,487 accounts, the auditors’ report on those accounts and the trustees’ annual report should be Net income/(expenditure) for the year 554,567 (1,204) 553,363 74,233 consulted. Copies of these can be obtained from Net movement in funds for the year 554,567 (1,204) 553,363 74,233 Epilepsy Research UK, PO Box 3004, London W4 4XT. Reconciliation of funds Total funds brought forward £1,034,182 £240,907 763,425 31,199 794,624 720,391 The annual accounts were approved by the at 1 April 2017 Research Raising trustees on 21st June 2018 and the annual report grants funds Total funds carried forward 1,317,992 29,995 1,347,987 794,624 and accounts have been submitted to the Charity committed at 31 March 2018 Commission. The accounts have been audited £389,143 and have been given an unqualified report Other charitable The statement of financial activities includes all gains and losses in the year. All incoming by our auditors. activities resources and resources expended derive from continuing activities. Judith Spencer-Gregson, Honorary Treasurer

28 29 Governance

President Vice-Presidents Scientific Advisory Committee Professor Helen Cross OBE Mr John Bowis OBE Professor Bruno Frenguelli Dr John Livingston (Chair) Consultant Paediatric Neurologist Dr John Mumford Professor of Neuroscience Leeds Teaching Hospitals NHS Trust Trustees Mr Paul Newman University of Warwick Dr Graeme Sills Dr Adam Noble Chair (outgoing) Dr Jolyon Oxley Mr Alasdair Ball Lecturer in Psychology (Vice-chair and lay representative) University of Liverpool Lord Stevenson of Coddenham CBE Professor Matthew Walker Head of Collection Management Professor Mark Richardson Chair (incoming) British Library Professor in Epilepsy Mr Barrie Akin Chief Executive Dr Andrew Bagshaw King’s College London Ms Maxine Smeaton The Rt Hon Mr David Cameron Reader in Imaging Neuroscience Professor Stephanie Schorge University of Birmingham Professor Bruno Frenguelli Chair in Translational Neuroscience Professor Michael Cousin University College London Ms Mary Gavigan Chair of Neuronal Cell Biology Professor Matthew Walker Dr Yvonne Hart University of Edinburgh (ex-officio as Chair of Trustees) Dr John Hirst CBE Mrs Anne Coxon Head of the Department of Clinical and (lay representative) Experimental Epilepsy and Professor of Mr Simon Lanyon Currently studying for a health Neurology, UCL Institute of Neurology, Professor Mark Rees psychology doctorate and the National Hospital for Neurology and Neurosurgery Professor Mark Richardson Professor Mark Cunningham Professor of Neurophysiology of Epilepsy Mr Harry Salmon Trinity College Dublin Miss Judith Spencer-Gregson

30 31 Cover image credit: Dr Peter Taylor, University of Newcastle

Epilepsy Research UK PO Box 3004, London W4 4XT 020 8747 5024 [email protected] www.epilepsyresearch.org.uk

Registered in England charity number 1100394 Registered office: Chiswick Town Hall, Heathfield Terrace, London W4 4JN Epilepsy Research UK is a member of the Association of Medical Research Charities Registered with the Fundraising Regulator Annual Review 2017/18. Published December 2018