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Developments in drug therapyDevelopments in drug alongand medical scanning, with major breakthroughs humanin the study of the greatgenome, mean that made inprogress has been causes understanding the years.of in recent will Even greater advances yearsbe made in the coming and the research that Epilepsy Research UK funds will be at the forefront of developments to control, and perhaps even cure, epilepsy.

don’tobviously affect their daily life, so a non-invasive approach very be would welcome. During the study the team will recruit children with a diagnosis of BCECTS, who are not taking any medication. Each child will undergo baseline a 24-hour EEG assessment. Their EEG activity will be analysed and it will then be used to drive video a game, which will be displayed on a screen for the child to see. The child will then be asked to ‘work the video with their the brain’, system being set up so that the video game moves faster when the brain is relaxed. In this way the child will be trained to maintain a state of brain relaxation (less prone to seizures), and they will be able to see when they are achieving this state. The children will attend regular training sessions and they will receive video every researchers The week. feedback will compare the ‘current’ EEG to the baseline 24-hour EEG at specific time points, in order to measure progress. They will also compare the frequency of EEG abnormalities during the 24-hour recording and at the end of the study, to see if there has been any reduction. If successful, this pilot grant will hopefully prompt larger studies into EEG-biofeedback as a new, non-invasive treatment for BCECTS.

been awarded a three-year fellowship in which he will apply of £211,516 these cutting-edge techniques to his neocortical chronic of model epilepsy. His main focus will be on how brain cells behave just before a , and what happens to their activity when a seizure is taking place. The findings from this study will potentially lead to the identification therapies new of development and that prevent seizures from starting or spreading. both pro-epilepticboth anti-epileptic and changes to neuronal networks. Studying a chronic model of epilepsy increase undoubtedly therefore, will, condition. this of understanding our Recent technical advances in microscopy mean that it is now possible to capture, in real time and exquisite detail, the activity of large animals whilst neurons of populations are awake. this However, technology has not yet been used in the field of epilepsy research. Dr Wykes has which

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We give priority to those areas We give priority to to producewhich have the potential problem areas,results in immediate leading toincluding: research accuracy improvements in the research intoof diagnosis; and and improving the treatment patient.quality of life of the seizures, Even with control of life for people with epilepsy can be unpredictable and restricted. However, new research offers the very real possibility of developing therapies that could help transform the lives of those affected. epilepsy Focal neocortical epilepsy(in which seizures arise in a specific part the of neocortex – folded surface) often is resistant toanti-epileptic drugs, and there an is urgent need for new treatment strategies. Dr Rob Wykes, at University London College neocortical focal chronic epilepsy, which has become a powerful tool for and mechanisms seizure investigating evaluating novel treatment options. Previous research into focal neocortical epilepsy has largely focused on acute induced seizures; however it is clear that in chronic epilepsy there are developed an animal model of shown to be a safe and effective adults some for option therapeutic with epilepsy, but as yet there are A no data available forchildren. Mrs Gina Parker and colleagues, at Birmingham Children’s Hospital Trust, NHS for a year-long pilot grant in which they will assess the feasibility of using EEG-biofeedback as a therapeutic tool in children with benign childhood epilepsy with centro-temporal spikes (BCECTS). BCECTS Rolandic (or epilepsy) is the most common childhood epilepsy often seizures because but syndrome, occur at night, and are usually ‘outgrown’ in adolescence, it is often left untreated. Research now suggests that disruption to sleep during BCECTS can cause memory problems, and so the need to treat is being reviewed. Many parents are reluctant to have their child take have can anti-epileptic drugs (which side effects), especially when their

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lead to a new test that predictswhether a person will respond to initial AED treatment. This will help to avoid unnecessary trials of aggressive AEDs, and help to reduce more (potentially other before delays successful) therapiesare explored. seizures have stopped in response to initial AED treatment, compared to continuing. are seizures whose those The team now wants to see if it can take this further, and actually predict who will respond to drug treatment (when it is being started for the first based time), on how the brain is connected. At this stage they don’t have enough data to design a definitive but study, they have been to conductawarded an initial £29,172 two-year study. pilot During the project the group will use two methods (EEG and fMRI) to find out as much information as possible about brain networks (in healthy brains and newly diagnosed IGE), and decide whether there are likely to be any brain network ‘markers’ that are easy to locatea) can and b) treatment predict accurately response. If the answer is yes, the researchers will then work out which tests and analyses will be best to identify these markers. If successful, this grant could ultimately

8

an AED and inadvertently cause harm. Dr Rachel Charlton, at the University of Bath, and colleagues in Bath, Birmingham, Liverpool, Manchester, Newcastle and Cork, have been awarded months over 18 £98,160 routinely using methods whether investigate to collected healthcare data are as reliable as direct clinical observation for studying the effects of AEDs on child development. During the study, the team will take existing anonymised electronic data from a database of general practice (GP) records, called the Clinical Practice Research Datalink, and they will use it to estimate the risk following problems neurodevelopmental of exposure to different AEDs in the womb. They will then compare their results to those from a previous study led researchers by in methods. traditional used which Liverpool, This project will help doctors to provide women who have epilepsy with the most reliable and accurate information about their treatment options during pregnancy. It will also serve as a guide to researchers who are planning effects neurodevelopmental the explore to of AEDs in the future. advantages, including lower cost and access to larger numbers of exposed children, it is not clear whether it is a reliable way of detecting important is This problems. developmental to know, because if risks are overestimated, an AED that is in fact safe and effective may not be recommended doctors; by but if they are underestimated, doctors may recommend

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Dr Rob Wykes, Dr Rachel McNamara, Rachel Dr Wykes, Rob Dr Epilepsy can be caused by a head a stroke, injuryor an inherent geneticdefect, cases 60%but of over in there no is known cause. Epilepsy can take many a momentary from forms blankspell to a dramatic . major Over600,000 people in the a diagnosis have UK epilepsyof – 103 people. 32,000people a year are newlydiagnosed with epilepsy the in – that’s UK about people 87 every day. people yearEvery 1,100 epilepsy. as a resultdie of The

outcomes methods There are currently no tests to tell person a whether will neurologists respond to AED treatment, and this would be extremely useful. Professor Mark Richardson at King’s London, and collaborators College at University College London, have studied groups of people with IGE using EEG. They have used their findings to develop new methods, which have provided clues about how brain regions are connected in IGE. Importantly, these methods have revealed that the brain is connected differently in people whose • • The most common type epilepsy of idiopathicis (meaning unknown of IGE. or epilepsy generalised cause) When IGE first is diagnosed,most peoplewill be treated with an anti- epileptic drug (AED), but only half will find their seizuresstop completely in the following year. • • • of work and they are very expensive. In recent years, databases that contain electronic routinely patient collected medical records have been increasingly used to study these effects. However, offers approach this many whilst For women with epilepsy pregnancy requires very careful anti- several because planning, epileptic drugs (AEDs) have been shown to increase the chance of birth defects in theunborn child Exposure to certain AEDs before birth can also have effects upon a child’s behaviour and development, but the nature of these is not fully understood and further research is needed. evaluating for methods Traditional behaviour and development (i.e. face-to-face interviews) require a lot

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of steroids, to find out whether stress- related seizures can be reduced or even prevented. If successful, this grant could potentially lead to the development of new treatments for epilepsy. awarded £29,208 over two years to investigate how stress hormones triggercan seizures. During the study the team will use mathematical and animal models to examine precisely how changes in electrical the cortisol alter levels activity of neuronal circuits in the brain that are known to be associated with seizures. They will later use synthetic compounds that regulate the activity lead to better awareness and identification of AED side effects in adults with a learning disability, and ultimately facilitate large studies of treatments with fewer side effects, thus improving quality of life for this group of people. side effects seen in adults with learning disability, and investigate their association with challenging behaviour and quality of life. This project will hopefully one for carers to complete and the other for patients to complete (where possible). These will be based on existing measures of side effects that are used for adults with epilepsy in the development The population. general of the questionnaires will involve small focus groups of patients, carers and whose experiences will professionals; help the team to examine the AED developed an animal model of epilepsy and new recording methods, which they have been using to test how affect seizures epileptic spontaneous processes.these vital Initial experiments have revealed that significant changes in heart function that and activity, seizure accompany the heart may even stop for several Jefferys Professor seconds. been has awarded over three £149,752 years to investigate: how breathing and heart function are affected seizures by and other changes in brain waves related to seizures repeated whether epilepsy; cause structural damage to the heart, and whether drugs can control seizure-related changes in heart and lung function. This research will provide direct evidence on likely causes of and it may ultimatelySUDEP, help in the identification of preventative strategies. University Bristol of and at Purdue University in the USA, 5 6

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p A at the University Bristol, of and colleagues in Bristol Professor Stafford Lightman effects on both neuronal activity and on the ways that brain cells communicate, so it could plausibly play a role in seizures. The steroid hormone cortisol steroid The is secreted the by body in spurts over the course and of the its day, levels increase dramatically during stress. Cortisol is known to have major People with epilepsyfrequently reportemotional stress in the lead-upto a seizure; but although the association between stress well recognised, is and seizures the mechanisms for this still Jefferys, at the University of Oxford, and colleagues at the The underlying mechanisms of of underlyingThe mechanisms SUDEP are not fully understood, but with more than 500 people in the UK dying in this way it each is a year, concern. for serious cause Researchers believe that SUDEP occurs when a seizure stops the heart and/or breathing for a certain length of time. Sudden unexpected death in epilepsy defined is (SUDEP) as the sudden death a person of with epilepsy, whichcannot be attributed to any cause such as traumaor drowning, and for which no toxicological or anatomical cause found. is and carers, to accurately identify have been for awarded a £97,924 two-year enable will that project them to develop a questionnaire that professionals can use in patients with both consultations and their impact on well-being. and McNamara Rachel Dr colleagues, at Cardiff University, However, itHowever, is unclear how best to identify and measure these side effects Epilepsy more is commonin adults with learning disability than in the ‘generalpopulation’, and there concern is amongst about carers and professionals the physical and behavioural side effects anti-epileptic of drug treatment(AED) inthis group.

Annual Review 2013-2014 Annual Review , of experience to the team. Deborah first This year we signed up to a new journal Epilepsia. This instituted a series of changes to our platform called ResearchFish, which volume will be the seminal s has become the tool of choice for all work in the SUDEP field ay Chairman s existing communications activity that Moving y we hope make Epilepsy Research UK major funding agencies in the UK. It for many years to come e allows us unique access to personal, and I am delighted that s a more outward-looking organisation. you epilepsy eport She has since developed an entirely professional and scientific outcomes Epilepsy Research UK can science R forwards... new social media programme that of the work that we support. In the take the credit for that. fullness of time, ResearchFish will went live in April 2014; early indications It has been an interesting year at give us a more accurate picture suggest that this could become a game- Epilepsy Research UK and one that of the impact of what we do. Another 12 months has changer in terms of our public profile. has seen us embark on some exciting passed; how time flies! In some On the research front, we continue to In other research news, March 2014 new initiatives. We continue to thrive ways, 2013-14 was a period of support high quality science through our saw the tenth edition of our expert in an otherwise challenging financial consolidation at Epilepsy Research various grant schemes. This year we workshop series. The theme for environment, not least because of the UK but it also saw developments funded a diverse portfolio of research, this year’s workshop was “SUDEP: dedication of our staff and the unstinting and events that promise long- with topics ranging from the activity of time for prevention – evidence and efforts of our remarkable supporters. 13 12 term benefits for our balance individual brain cells during a seizure, clinical translation” and it attracted On behalf of the Trustees of Epilepsy sheet, efficiency and profile. the effect of seizures on respiratory and experts from across the globe to Research UK, I extend my admiration St Anne’s College, Oxford for two and appreciation to you all for your One development was the launch of cardiac function and the possible link to days of in-depth discussion on the continued commitment to our cause. the SayYes campaign, which has SUDEP, the side effects of anti-epileptic important issue of SUDEP. Sincere encouraged unprecedented numbers drug exposure during pregnancy, and thanks go to my fellow Trustee, Dr of visitors to our website to become the role of stress in triggering seizures. Lina Nashef, who was responsible regular supporters of Epilepsy We expect that all seven of the for the scientific content of the Research UK. The campaign is projects we funded this year will workshop and for publication of the ongoing and is still generating new make a significant contribution to our Graeme J Sills PhD, Chair, Board of Trustees proceedings in the prestigious Epilepsy Research UK, September 2014 income that will help us to fund even understanding of epilepsy in future. Annual Review 2013-2014 more research in future. Summer of One of the long-standing challenges has 2013 also saw the appointment of for Epilepsy Research UK has It has been an interesting year... and one that Deborah Pullen, our new Director of been how to measure the new initiatives Communications, who brings a wealth success of our funding. seen us embark on some exciting Annette Newman on her Vietnam to Cambodia Cycle 14

achieving this. By making a donation we can SayYes to more research Fundraising projects that could bring new hope. Encouragingly the campaign is Over the last year, the level of proving effective in converting visitors commitment demonstrated to our website into regular donors. by our supporters in their As always our Memorial Fund fundraising efforts on our behalf supporters have shown great has been truly extraordinary. dedication to supporting our research

Phill Jupitus, Sofie Hagen and Tim Wells People have run, cycled and in the name of their loved ones with a at the Squat Betty spoken word charity Fred Corbett on the Everest Base Camp Trek huge variety of fundraising initiatives. night at the Duchess of Cambridge pub swum all manner of distances and supporting the Ellen Mezzetti Memorial Fund courses. We have had supporters The year the money they have Carol Brown, Carli Burbridge raised will very aptly go towards taking on Mount Everest, cycling 15 and Andrea Richardson at 16 Professor Jefferys’ project the Newcastle Big Fun Run Mark Randall at the 2014 Tough Mudder across Vietnam, and some have literally walked over hot coals for us. investigating the causes of SUDEP. To solicit commitment of a slightly Some people choose to support us less demanding, but equally by remembering Epilepsy Research valuable, kind we launched our UK in their will. This simple but SayYes campaign which focuses on exceptionally kind act makes a encouraging people to donate significant difference to the amount regularly to the charity via direct of research we can fund every year and is much appreciated. debit. Yes is a memorable acronym (You. Epilepsy. Science) We would like to thank all our that encapsulates the donor’s supporters for their contribution, relationship to our work. You, or however it was made, over the past someone close to you, is affected by year. It is only through your efforts Ross Walker and Carla Boyles after firewalking Epilepsy. Ultimately you wish there and generosity that we can hope Tracey and Michael Clifton taking on The Mighty Deerstalker Jo Bailey at the 2013 London Triathlon was a cure – or at least the hope to make a real difference to the 17 for one. Science is the catalyst to lives of people with epilepsy.•

Despite the continued challenging 3% fundraising environment, income 5% 1% from individuals and legacies was INCOME 40% It is only equal to last year. Income from 16% through Legacies £463,271 your FINANCIAL fundraising events was down efforts and generosity on the previous year and we Individuals £408,270 that reduced our expenditure on mass we can hope to SUMMARY participation events that were not Fundraising events £169,149 make a real producing a sufficient return to difference Trusts & companies £60,314 to the reflect this, hence the reduction lives of people Overall income and expenditure in our fundraising costs. Interest £38,506 with epilepsy were roughly in line with the During the year we launched our previous year. The most marked Research grants £13,623 SayYes regular giving campaign not required Jake and Rob Scott on the difference was in ‘other that is proving an effective tool Manchester to Blackpool Cycle Ride charitable expenditure’ which 35% in converting website visitors into £1,153,133 21 increased due to the scientific direct debit donors. Due to the workshop held in March, unexpected saving made on 2% the appointment of our new research grants, the reserves held Communications Director and EXPENDITURE 19% by the charity are slightly in excess the initial expenditure on our of its prescribed twelve months of planned social media campaign. Research grants running costs, but these additional £625,697 Expenditure on research grants monies will be available to spend Other charitable £278,305 was projected to be on par with in the 2015 grant round. activities 2013, but one funded project was • withdrawn when the principal we Fundraising costs £214,994 investigator moved to a new post During the year Trusts & companies £18,087 in Australia and savings were SayYes launched our The Graham family on their annual 10km walk/run/ made on another project leading campaign £1,137,083 triathlon for the Andrew Graham Memorial Fund to a reduction in expenditure. regular giving 24% 55%

18 22 20

Financial summary – year ended 31st March 2014 SCIENTIFIC ADVISORY COMMITTEE Trustees’ Auditors’ Unrestricted Restricted Total Total Trustees Professor Mark Richardson (Chairman) Statement Statement Funds (£) Funds (£) 2014 (£) 2013 (£) Mr Alasdair Ball Professor Bruno Frenguelli The financial information on this page As auditors for the Epilepsy Research INCOME PRESIDENT Professor Liam Gray is a summary extracted from the UK we have reviewed the summarised Donations and gifts 468,584 - 468,584 466,260 Professor Brian Neville accounts of Epilepsy Research UK accounts and consider that they are (appointed September 2013) Dr Adam Noble (appointed November 2013) Fundraising events 169,149 - 169,149 197,484 for the year ending 31st March 2014. consistent with the full accounts Mrs Sarah Shenow Legacies 463,271 - 463,271 415,603 on which we gave our opinion. TRUSTEES The summarised accounts may not Research activities - - - - Dr Graeme Sills Dr Graeme Sills (Chairman) contain sufficient information for a full Interest 38,506 - 38,506 41,343 Dr Stephanie Schorge Mr Barrie Akin understanding of the financial affairs of Research grants not required 13,623 - 13,623 23,649 Dr Amanda Wood A Davies ACA (Senior Statutory Auditor) The Rt Hon David Cameron MP the charity. For further information, the full Dr Sameer Zuberi F A Magee & Company, Chartered TOTAL INCOME 1,153,133 - 1,153,133 1,141,339 Professor Helen Cross annual accounts, the auditors’ report on Accountants and Statutory Auditors Dr John Hirst CBE VICE-PRESIDENTS those accounts and the Trustees’ annual EXPENDITURE report should be consulted. Copies of Wimbourne House Research grants committed 625,697 - 625,697 687,349 Professor Mike Kerr Rabbi Lionel Blue 4-6 Pump Lane, Hayes, UB3 3NB

19 these can be obtained from Epilepsy Mr John Bowis OBE 19th June 2014 Charitable activities 276,004 2,301 278,305 184,312 Mr Simon Lanyon Research UK, PO Box 3004, London Fundraising 214,994 - 214,994 224,305 Mrs Mary Manning Mrs Judy Cochrane W4 4XT. The annual accounts were Governance 18,087 - 18,087 19,056 Dr Lina Nashef Sir Graham Hart KCB approved by the Trustees on 19th June Professor Brian Neville Mrs Isabel Little 2014 and the annual report and accounts 1,134,782 2,301 1,137,083 1,115,019 TOTAL EXPENDITURE (retired September 2013) Dr John Mumford have been submitted to the Charity Net incoming resources 18,351 (2,301) 16,050 26,320 Dr Jolyon Oxley (retired September 2013) Mr Paul Newman Commission. The accounts have been audited and have been given PO Box 3004 London W4 4XT Balance brought forward 698,603 37,692 736,295 709,975 Professor Mark Rees Dr Jolyon Oxley (appointed September 2013) at 1 April 2013 Professor Mark Richardson Lord Stevenson of Coddenham CBE an unqualified report by our auditors. t 020 8747 5024 f 0870 838 1069 Balance carried forward 716,954 35,391 752,345 736,295 (appointed September 2013) Mr Hugh Thompson Signed on behalf of the Trustees at 31 March 2014 Mr Harry Salmon e [email protected] Mr Graham Ward CBE Total assets 3,147,573 35,391 3,182,964 3,360,672 Mr Martin Stevens w www.epilepsyresearch.org.uk Current liabilities (2,430,619) - (2,430,619) (2,624,377) Professor Matthew Walker Registered in England charity no.: 1100394 Dr Helen Wilkins (retired June 2013) Martin Stevens, Honorary Treasurer TOTAL FUNDS 716,954 35,391 752,345 736,295 19th June 2014