Chairman’s Report have also undertaken an overhaul I would like to welcome Judith of our webpages to better showcase Spencer-Gregson as our new THE PAST 12 MONTHS PROVED TO The 2015 awards covered a broad range the work that we fund and its wider treasurer and who joins us from BE ONE OF THE MOST SUCCESSFUL of science, from fundamental studies of implications for . I am told by Muscular Dystrophy UK, where she YEARS EVER FOR EPILEPSY how epilepsy develops in an otherwise our Director of Communications that was previously finance director. normal brain to a clinical study attempting RESEARCH UK. WE ALLOCATED the profile of Epilepsy Research UK, The achievements of Epilepsy to understand why people with epilepsy NEARLY £840,000 TO EPILEPSY as measured by likes, shares, tweets Research UK in 2014-15 are all the also often experience depression. One RESEARCH PROJECTS AROUND THE and engagements (whatever those more impressive as they come at notable additional to our portfolio this year UK IN OUR ANNUAL GRANT ROUND, are!), has increased exponentially a time of increased investment in was a project on epilepsy-related deaths, WHICH IS SECOND ONLY TO OUR since the new communications strategic areas of the organisation led by Dr Susan Duncan at the Western 20TH ANNIVERSARY YEAR IN 2012. programme started. Unsolicited such as communications, designed General Hospital in Edinburgh. For many donations over the same period are Our portfolio of research is now larger to raise the public profile of epilepsy years, it was a source of dismay to me up, suggesting that we are converting and more diverse than it has ever been. and the urgent need for greater that we did not support any projects website visitors and those who We awarded 5 project grants and 4 research into this devastating condition. on deaths associated with epilepsy. engage with our social media pilot grants this year to add to 3 This success can be attributed to a We now have two world-leading studies content into supporters. fellowships, 15 project grants, and 6 number of factors, including the SayYes in this important area. pilot grants that were ongoing in 2014-15. I would like to take this opportunity campaign that has been running In monetary terms, our total commitment A new development at Epilepsy Research to extend my sincere gratitude to on our website for the past year. It also to advancing the understanding of UK in the past year has been additional Martin Stevens, who left the Board reflects the continued dedication of our epilepsy through research is currently investment in our communications, of Trustees of Epilepsy Research UK staff but perhaps most significantly, the in excess of £3.5 million. particularly through social media. We at the end of 2014, having served as ongoing commitment and unstinting our treasurer for 17 years. Martin kept enthusiasm of our supporters. As ever, a safe hand on our finances from the I thank you all for your efforts. In monetary terms, our total commitment to advancing very earliest days of the charity but is the understanding of epilepsy through research is now enjoying a well-earned and long- Dr Graeme Sills currently in excess of £3.5 million. overdue retirement. In his stead, Chair of Trustees transforming lives through research in 2015

a huge thank Fundraising you to all our supporters

People across the country have been busy organising events and collections.

As always our supporters have As always our Memorial Fund demonstrated extraordinary supporters have shown great dedication and imagination in their dedication to supporting our research Pamela Hetherington and Nancy Bettelley Pete Skarparis and friends Catherine Booth and Rose Bartlett Keith Wisdom climbing Everest fundraising efforts on our behalf, in the name of their loved ones with a at the Blackheath Toy Fair. at the Big Fun Run. collecting on Purple Day. on a versaclimber. taking on a huge variety of physical huge variety of fundraising initiatives. and organisational challenges. People This year the money they have raised across the country have been busy will go towards Dr Duncan’s project organising events and collections concerning epilepsy related deaths. whilst others have walked, run, cycled Some people chose to support us and swum all manner of distances by remembering Epilepsy Research and courses both here and overseas. UK in their will. This simple but Our SayYes campaign which we exceptionally kind act makes a launched last year to encourage significant difference to the amount people to donate regularly to the of research we can fund every year charity via direct debit has been and is much appreciated. very successful. Our increased social We would like to thank all our media activity has drawn more people supporters for their contribution, to the charity and into supporting however it was made, over the past the SayYes campaign. This regular year. It is only through your efforts support is particularly important and generosity that we can hope as it helps us plan for the future to make a real difference to the lives Lorraine Hughes-Gage with family and friends at the end of the London to Brighton Cycle Race. Philippa Miller bungee jumping Martin Kemp reading our Radio 4 Appeal. with increased certainty. of people with epilepsy. dressed as a minion.

0.5% 2% Financial summary income 15.5% 32% Individuals £446,748

An increase in income allowed us to Legacies £440,935 allocate more to research projects with 18% the final sum committed being up 34% Fundraising events £241,810 on the previous year. Trusts & companies £215,507

Research grants not required With income close to £1.4 million, control and expenditure decreased £7,042 32% 2014/15 was the charity’s second slightly on last year without any Interest £26,388 Lisa Tong, Lisa Scott and Zara Qema Picking the winning ticket at the Zoe most successful year ever in adverse effect on income. During holding a Purple Day Cake Sale Mayne ‘Dance for Life’. fundraising terms. Trust income the year we took the decision to increased significantly thanks to the place £170,000 into a designated £1,378,430 very generous support of the James research fund to ensure that 1% Lewis Foundation. Income from monies are available to maintain 14% fundraising events also increased an acceptable level of research expenditure markedly on last year.The increase grants should we experience an 61% in income allowed us to allocate more unexpected drop in income in Research grants £839,791 to research projects with the final any given year. Legacies are 24% sum committed being 34% up on the main area where income Other charitable activities £328,427 the previous year. Expenditure on can vary substantially from year our other charitable activities also to year. In order to mitigate Fundraising costs £197,531 increased as we developed our social against this we will be media activity to raise awareness of implementing a legacy campaign Governance £19,146 epilepsy and the need for research in the coming year which we hope into the condition. We continued to will ultimately result in a more £1,384,895 keep our fundraising costs under tight regular income stream. Samantha Porter presenting ERUK The Rogers and friends getting President Brian Neville with a cheque. muddy at the Spartan Race.

Financial summary for the year ended 31st March 2015 Trustees’ Auditors’ Unrestricted Restricted Total Funds Total Funds Trustees Funds (£) Funds (£) 2015 (£) 2014 (£) statement statement INCOME The financial information on this page As auditors for the Epilepsy PRESIDENT Mrs Anne Coxon Donations & Gifts 512,503 149,752 662,255 468,584 is a summary extracted from the Research UK we have reviewed Professor Brian Neville (appointed September 2014) Professor Bruno Frenguelli Fundraising events 241,810 - 241,810 169,149 accounts of Epilepsy Research UK the summarised accounts and TRUSTEES Professor Liam Gray Legacies 440,935 - 440,935 463,271 for the year ending 31st March 2015. consider that they are consistent Dr Graeme Sills (Chairman) Dr John Livingston Interest 26,388 - 26,388 38,506 The summarised accounts may not with the full accounts on which we gave our opinion. Mr Barrie Akin (appointed September 2014) Research grants not required 7,042 - 7,042 13,623 contain sufficient information for a full The Rt Hon David Cameron MP Dr Adam Noble understanding of the financial affairs TOTAL INCOME 1,228,678 149,752 1,378,430 1,153,133 A Davies ACA Professor Helen Cross OBE Dr Stephanie Schorge of the charity. For further information, Senior Statutory Auditor Dr John Hirst CBE Mrs Sarah Shenow EXPENDITURE the full annual accounts, the auditors’ F A Magee & Company, (resigned June 2014) Research grants committed 839,791 - 839,791 625,697 report on those accounts and the Professor Mike Kerr Chartered Accountants Dr Graeme Sills Other charitable activities 327,541 886 328,427 278,305 trustees’ annual report should be Mr Simon Lanyon and Statutory Auditors 197,531 - 197,531 214,994 Mrs Mary Manning Dr Amanda Wood Fundraising consulted. Copies of these can be Wimbourne House, 4-6 Pump Dr Lina Nashef Dr Sameer Zuberi (retired June 2014) Governance 19,146 - 19,146 18,087 obtained from the Epilepsy Research Lane, Hayes, UB3 3NB UK, PO Box 3004, London W4 4XT. Professor Mark Rees VICE-PRESIDENTS TOTAL EXPENDITURE 1,384,009 886 1,384,895 1,137,083 18th June 2015 The annual accounts were approved Professor Mark Richardson Rabbi Lionel Blue Net incoming/(outgoing) by the trustees on 18th June 2015 Mr Harry Salmon (155,331) 148,866 (6,465) 16,050 Mr John Bowis OBE resources and the annual report and accounts Miss Judith Spencer-Gregson 149,752 (149,752) - Mrs Judy Cochrane Transfer between funds - have been submitted to the Charity (appointed September 2014) Sir Graham Hart KCB Net incoming/(outgoing) (5,579) (886) (6,465) 16,050 Commission. The accounts have been Mr Martin Stevens Mrs Isabel Little resources after transfer (retired September 2014) audited and have been given Dr John Mumford Balance brought forward 716,954 35,391 752,345 736,295 Professor Matthew Walker at 1 April 2014 an unqualified report by our auditors. Dr Jolyon Oxley Balance carried forward 711,375 34,505 745,880 752,345 PO Box 3004 London W4 4XT at 31 March 2015 Signed on behalf of the trustees SCIENTIFIC ADVISORY COMMITTEE Mr Paul Newman t 020 8747 5024 Total assets 3,421,030 34,505 3,455,535 3,182,964 Professor Mark Richardson Lord Stevenson of Coddenham CBE e [email protected] (2,709,655) (2,709,655) (2,430,619) Judith Spencer-Gregson (Chairman) Mr Hugh Thompson Current liabilities - w www.epilepsyresearch.org.uk Honorary Treasurer Mr Alasdair Ball Mr Graham Ward CBE TOTAL FUNDS 711,375 34,505 745,880 752,345 18th June 2015 Registered in England charity no.: 1100394 Epilepsy Research UK is the only national Epilepsy is one of the most common organisation exclusively dedicated to neurological conditions. funding research into the causes, treatment and prevention of epilepsy. Epilepsy is a tendency to have recurrent , caused by disruptions to the normal electrical activity We give priority to those areas which have the potential to produce of the brain. results in immediate problem areas, including: research leading to improvements in the accuracy of diagnosis; and research into Over 600,000 people in the UK have a diagnosis of improving the treatment and quality of life of the patient. epilepsy – 1 in every 103 people. Even with control of seizures, life for people with epilepsy can be unpredictable and restricted. However, new research offers 32,000 people a year are newly diagnosed with epilepsy the very real possibility of developing therapies that could help in the UK – that’s about 87 people every day. transform the lives of those affected. Every year 1,100 people die as a result of epilepsy. Developments in drug therapy and medical scanning, along with major breakthroughs in the study of the human genome, mean that Epilepsy can be caused by a stroke, a head injury or an great progress has been made in understanding the causes of inherent genetic defect, but in over 60% of cases there epilepsy in recent years. Even greater advances will be made in is no known cause. the coming years and the research that Epilepsy Research UK funds will be at the forefront of developments to control, and Epilepsy can take many forms from a momentary blank perhaps even cure, epilepsy. spell to a major . This year we awarded nine grants, details of which are outlined below. transforming lives through research in 2015 Research Grants Awarded in 2014/15

Investigating how Validating computer models Exploring the balance epilepsy is triggered for understanding the underlying between excitation and after a brain injury networks of onset inhibition in epilepsy

Dr Andrew Trevelyan animals, to identify how Professor John Terry ‘resting state’ periods of routine clinical Dr Vincenzo Marra The latest technology allows synaptic Newcastle University an episode of intense seizure-like University of Exeter EEGs and successfully identify whether University of Leicester vesicles to be labelled according to Project grant awarded of £147,334 activity causes neurons to change Project grant awarded of £149,500 a person has epilepsy in almost 80% of Pilot grant awarded of £29,996 their behaviour, and for individual which genes they express (the way cases. In this study the group will validate vesicles be studied. The group will take Neurons in the brain communicate Epileptogenesis is the term used in which they assimilate the information The diagnosis of epilepsy currently and optimise their computer models in a rodent model of epilepsy, and healthy with each other via small contact to describe how epilepsy arises following a encoded in their genes), which in relies on a description of the event(s) order to progress them towards a fully controls for comparison, and they will points called synapses, using special brain insult, for example turn will affect how the neurons supported by the results of hospital automated system that can be used apply this technology to different types a stroke, a traumatic brain injury or an molecules known as neurotransmitters. function. They believe that these tests, particularly EEG. Conventional clinically. To achieve this, they will work of synapse in the brain. They will be episode of . It involves a Neurotransmitters are either excitatory gene changes are the start of the EEG too frequently ‘misses’ epilepsy with an experimental epilepsy team looking for an imbalance between long and complex cascade of events, and (meaning they try to activate connected epileptogenic cascade. cases or falsely shows epilepsy to be based in Switzerland to repeatedly excitatory or inhibitory synaptic vesicles what little is known about it mainly present, and it is therefore an unreliable neurons) or inhibitory (meaning they Identifying the gene changes that refine their models and test their ability in the epilepsy models. concerns the final stages. Identifying what diagnostic test. EEG recorded during try to silence connected neurons). In occur at the beginning of the to identify different treatment outcomes happens at the very start of this cascade, a seizure is reliable, but it is inconvenient epilepsy there is often a disruption to Establishing the role of synaptic vesicles epileptogenic cascade will transform in rodents. They will then apply the however, could lead to important and expensive to obtain. the normal balance between excitation in epilepsy will greatly increase our how the subsequent stages are optimised models to human data breakthroughs and, and inhibition in the brain, but the understanding of the cellular and studied (providing more useful Professor Terry and colleagues plan collected at King’s College London. ultimately, to treatments that stop structural changes that contribute to molecular bases of epilepsy. This will results). Even more importantly, it to find out if it is possible to identify epileptogenesis. Currently no such If this study is successful it could, within this are not fully understood. be particularly important in could highlight drug targets within treatments are available. whether a person has focal epilepsy, 5 years, start to improve the accuracy where there is no ‘obvious cause’ the cascade, which will potentially Dr Marra and his team plan to and whether or not they have responded of focal epilepsy diagnoses and allow (e.g. an underlying brain injury). Dr Trevelyan and his team will focus lead to the development of new investigate whether small compartments to treatment, without having to observe more prompt identification of the most In the long-term (approximately on the beginning of the cascade, and they treatments. The team hopes that called synaptic vesicles, which are seizures via clinical recordings. effective treatment(s). 5 years), synaptic vesicles could prove plan to identify how a brain insult can lead such therapies will be available in responsible for storing and releasing The team’s ongoing research, funded to be a viable new drug target for the to early changes in neuronal function. The the next 15 years. neurotransmitter molecules, play a key by Epilepsy Research UK, has developed control of seizures. group will use brain slice preparations, role in altering the balance. which are easier to study than whole computer models that can analyse short

How does stimulation of the Looking back at the causes of senses affect the way epileptic death of people in Scotland with Cortical electrical stimulation for seizures spread across the brain? epilepsy, over a five-year period the treatment of focal epilepsy

Dr Jason Berwick allow them to spread. The group plans to Dr Susan Duncan the subjects’ medical records, focusing Dr Antonio Valentin video EEG monitoring, until they have experienced a certain number of University of Sheffield investigate how this happens. Western General Hospital Edinburgh particularly on their epilepsy type, King’s College London seizures, and they will then receive and Muir Maxwell Epilepsy Centre socio-economic class, standard of care Project grant awarded of £140,107 Project grant awarded of £147,758 Continuing their work with rodents, the several intervals of cortical electrical (according to Scottish Intercollegiate Project grant awarded of £143,872 Dr Valentin and his team are currently Epileptic seizures can start in a small team will use a range of methods to stimulation over 48 hours. For the first Guidelines – SIGN), access to epilepsy developing a new treatment called interval, half of the participants will in fact part of the brain before quickly measure changes in brain cell behaviour It is widely recognised that adults with services, and the presence of additional cortical electrical stimulation, which is receive ‘pretend’ stimulation (although and in the way in which they are fed by epilepsy have a shorter life expectancy spreading to others, but very little is disorders (co-morbidities) such as designed for people whose epilepsy neither they nor the people analysing blood during the spread of seizures. than the ‘general’ population, but the known about how or why this happens. depression. They will then compare the originates in one part of the brain, who the results will be aware of this). This Finding exactly how and where seizures By carrying out these measurements in reasons for this are unclear. Evidence data from the two groups to see if there are not eligible for surgery. The technique will serve as a control/comparison group. spread will lead to the development of different conditions (exposing the suggests that some epilepsy related deaths are any significant differences. involves ‘blocking’ the abnormal area The researchers will record the number models to different stimuli), they hope may be preventable, but so far there has using an electrical current, and it has new anti-epileptic drugs (AEDs), This study will provide accurate estimates of seizures each person has during the to build up a picture of how neurons not been enough research to confirm this, already been trialled in two people at meaning that people who don’t respond of the frequency, causes and risk factors stimulation period, and they will also or indeed to put it into practice. King’s College Hospital, London. The to current drugs will have a chance of are recruited to seizure activity. for deaths in adults with epilepsy. Hopefully make a note of any side effects initial results were promising, but further treatment. Studying the way in which Dr Duncan and her team believe that experienced (both during and after This work in animals will increase our it will also highlight which of these factors research is needed before the treatment adults with epilepsy who are at a greater seizures spread is also important to understanding of how and when could be modified or even prevented can be offered more widely. treatment). Once they have collated their understanding how a person can feel seizures spread across the brain. In the risk of preventable death may have social through improvements in epilepsy care. data, the team will analyse it to find out The researchers plan to find out how safe if electrical cortical stimulation reduces and act during a seizure longer term (approximately 5-10 years) and clinical traits that could allow them to A UK-wide study of epilepsy services in be identified early on. In this project they children (called Epilepsy12) resulted in and effective electrical stimulation of the seizure frequency. The control group In a previous study, Dr Berwick and his the findings can hopefully be will try to find out what these traits are. improved epilepsy services within 3-5 years. epileptic focus is. They are particularly (that didn’t receive the initial interval investigated in humans and, if interested in how stimulation affects colleagues discovered that stimulating Based on this information, Dr Duncan of stimulation) will help the researchers applicable, these will help neurologists The team will use existing databases to seizure frequency and any epilepsy-like the whiskers of rodents caused seizures anticipates that the results of this project to judge whether any apparent benefit to more accurately pinpoint where identify all adults with epilepsy in Scotland activity in between seizures. of stimulation is actually because of it that had been induced in particular could lead to improvements in care (and seizures begin using techniques such as who died between 2009 and 2014. They and not something else. areas of the brain to spread more easily hence fewer deaths) within 3-5 years. The team will recruit at least 25 people will then source another group of adults than in rodents that did not receive this functional magnetic resonance imaging who have been assessed for epilepsy If this study is successful, cortical electrical with epilepsy who are very similar in terms Dr Duncan’s project has been supported by stimulation. In light of this finding, they (fMRI). Not only will this improve existing surgery (and are still in-patients), at stimulation could soon become a of age and gender but have not died. our memorial funds. We would like to thank believe that stimulation of the senses treatments such as epilepsy surgery, but King’s College Hospital and the National standard treatment for people with Having established the two groups, Dr all our memorial fund supporters for their ‘weakens’ certain parts of the brain so that it will potentially highlight new targets Hospital for Neurology and Neurosurgery. AED-resistant focal epilepsies (which Duncan and her colleagues will examine great generosity over the past year. All subjects will undergo a period of they ‘succumb’ to seizure activity and for the development of novel AEDs. are notoriously difficult to manage).

Finding brain imaging measures Prolonging the experimental Investigating the mechanisms that help to predict memory lifetime of human epilepsy tissue of depression in temporal outcomes in children after lobe epilepsy epilepsy surgery Professor Roland Jones to determine whether or not it is possible Dr Jacqueline Foong The team will use brain imaging University of Bath to preserve live human tissue in a similar University College London techniques in combination with Pilot grant awarded of £29,582 way, and the optimal conditions with Pilot grant awarded of £29,977 psychological tests to investigate Professor Stefano Seri a memory task. They will also measure which to achieve this. how the frontal areas of the brain work Aston University the children’s overall ability level, memory Our understanding of epilepsy and Depression is common in people with in a small group of people with TLE and attention skills. The children with The team will explore the effects of Pilot grant awarded of £21,666 its treatments has depended a lot on (TLE), but too who have also been diagnosed with epilepsy will undergo testing both before using animal models. However, the different culture media on the life and often it goes unrecognised and Epilepsy surgery in children offers depression. They will also examine a and after surgery, and the results will be relevance of these to human epilepsy usability of human epilepsy surgery treatment is delayed. Depression not the prospect of fewer seizures and small group of people with TLE but no compared. All of the data collected will is questionable. It would be highly tissue (from both adults and children). only adds to the burden of coping with improved overall quality of life; however history of depression – or any other be used to try and identify parameters unethical for scientists to experiment Specifically they will look to find a epilepsy, it can have a negative impact there is a risk that brain regions that medium that will allow the functionality psychological disorder – and compare that will help to predict children’s directly on people with epilepsy, but on relationships and employment – are important for cognition (thinking, of human tissue slices to be investigated the two. cognitive outcomes after epilepsy surgery. it is possible for them to study living thereby significantly decreasing the learning and memory) will be affected. for 2-4 days (or possibly even longer). human tissue that has been removed person’s quality of life. Suicide rates The results of this pilot project will In adults, imaging-based techniques This small pilot study will help to during epilepsy surgery. The problem Prolonging the life of human tissue in this are also increased amongst people increase our understanding of the have emerged that can help to predict determine whether non-invasive scanning with this is that there are a limited number way will allow scientists to make full use mechanisms involved in depression who will suffer cognitive effects after prior to epilepsy surgery in children with epilepsy compared to the general of tissue samples available for each of valuable human tissue with minimal in TLE, and in the future they will epilepsy surgery, but it is not clear how can predict cognitive problems later on. population, and this is likely to be subject, and the tissue only stays alive wastage (making it more economically hopefully help doctors to identify applicable these are to children (whose It will also help to define the best brain a result of depression. activity measures to use in order to make for 12-15 hours meaning that a lot of viable). This will not only increase the rate people with TLE who may be more brains are still developing). However despite many people being this assessment. The information gained tissue is wasted and the accumulation at which we learn about how human vulnerable to it (allowing more prompt affected, the mechanisms that underlie Professor Seri and his team will examine will enable Professor Seri and his team of data is slow. epilepsy arises, but having more tissue diagnosis and treatment). Ultimately new ways to help the prediction of depression in TLE are still unclear. this study may even help scientists to apply for further funding for a larger The experimental life of animal brain available will also make the investigation cognitive problems after epilepsy surgery study, and they hope to develop tissue can be extended by weeks, by of new treatments easier. In the longer The function of the frontal regions of to develop new, more effective in children. evidence based imaging tools for keeping it in a nutrient culture medium term (5-8 years) the knowledge gained the brain can be affected in TLE, but treatments for depression. The group will use non-invasive brain clinical use in the medium term (a gel or liquid that contains the nutrients about human epilepsy as a result of this it is not known if and how this scans to assess activity in the brains of (approximately 4 years). necessary to keep tissue alive). study may lead to new or improved contributes to depression. Dr Foong children with and without epilepsy during Professor Jones and his colleagues aim epilepsy treatments. and her colleagues will explore this.