Epilepsy Research UK is entirely dependent on donations to fund its grant awards, and we are hugely indebted to all our supporters for their generosity. Whether you have made a single or regular donation, asked for contributions in lieu of gifts or to honour the memory of someone special, or you are a company or charitable trust that has donated, we thank you all. Whatever the size of donation you give, it makes an enormous difference to the amount of research we can fund.

Those who have actively fundraised for us during the year have done so with incredible drive and ingenuity. People have walked, run, cycled, kayaked, swum, waded through mud, and embraced the thrill of skydiving or bungee-jumping, across the UK and abroad! Others have fundraised for us by organising activities from coffee mornings to golf days. Gifts of time have been given by volunteers for cheering teams, in Christmas card shops and for collections. The dedication and time given to make these events possible, and the generous support of those who sponsor or help organise these activities, are immense.

Invariably people choose to support Epilepsy Research UK because epilepsy has had an impact on their own lives or on the lives of people close to them. This is particularly true for those who support us because they have lost a loved one to

epilepsy. The commitment they show, in the hope that their efforts will help to prevent others from going through what they have endured, is truly inspiring. This year monies raised by our memorial funds will be allocated to Dr Wright’s research, described overleaf.

Some people choose to support us by remembering Epilepsy Research UK in their will. This simple but exceptionally thoughtful act makes a significant difference to the amount of research we can fund every year, and it is very much appreciated.

We would like to thank all our supporters for their contributions, however they were made, over the past year. It is only through your efforts and generosity that we can hope to make a real difference to the lives of people with epilepsy.

PRESIDENT

Professor Brian Neville (retired December 2015)

TRUSTEES

Dr Graeme Sills (Chairman)

Mr Barrie Akin

The Rt Hon Mr David Cameron MP

Professor Helen Cross OBE (retired December 2015)

Dr Yvonne Hart (appointed March 2016)

Dr John Hirst CBE

Professor Mike Kerr

Mr Simon Lanyon

Mrs Mary Manning

Dr Lina Nashef (retired December 2015)

Professor Mark Rees

Professor Mark Richardson

Mr Harry Salmon

Miss Judith Spencer-Gregson

Professor Matthew Walker

SCIENTIFIC ADVISORY COMMITTEE

Professor Mark Richardson (Chairman)

Mr Alasdair Ball

Mrs Anne Coxon

Dr Mark Cunningham (appointed November 2015)

Professor Bruno Frenguelli

Professor Liam Gray (retired June 2015)

Dr John Livingston

Dr Adam Noble

Dr Stephanie Schorge

Dr Graeme Sills

Dr Amanda Wood

VICE-PRESIDENTS

Rabbi Lionel Blue (retired March 2016)

Mr John Bowis OBE

Mrs Judy Cochrane (retired March 2016)

Sir Graham Hart KCB (retired March 2016

Mrs Isabel Little (retired December 2015)

Dr John Mumford

Mr Paul Newman

Dr Jolyon Oxley

Lord Stevenson of Coddenham CBE

Mr Hugh Thompson (retired December 2015)

Mr Graham Ward CBE (retired December 2015)

Trustees Financial summary for the year ended 31st March 2016Unrestricted

Funds (£)Restricted

Funds (£)Total Funds

2016 (£)Total Funds

2015 (£)

INCOME

Donations & gifts 394,216 - 394,216 662,255

Fundraising events 328,704 - 328,704 241,810

Legacies 426,045 - 426,045 440,935

Interest 24,818 - 24,818 26,388

Research grants not required 62,426 - 62,426 7,042

TOTAL INCOME 1,236,209 - 1,236,209 1,378,430

EXPENDITURE

Research grants committed 687,179 - 687,179 839,791

Other charitable activities 368,381 1,056 369,437 341,969

Fundraising 205,082 - 205,082 203,135

TOTAL EXPENDITURE 1,260,642 1,056 1,261,698 1,384,895

Net incoming/(outgoing) resources (24,433) (1,056) (25,489) (6,465)

Transfer between funds - - - -

Net incoming/(outgoing)resources after transfer (24,433) (1,056) (25,489) (6,465)

Balance brought forward at 1 April 2015 711,375 34,505 745,880 752,345

Balance carried forward at 31 March 2016 686,942 33,449 720,391 745,880

Total assets 3,264,564 33,449 3,298,013 3,455,535

Total liabilities (2,577,622) - (2,577,622) (2,709,655)

TOTAL FUNDS 686,942 33,449 720,391 745,880

2015/16 was a successful year in fundraising terms, with total charity income from all sources of £1,236,209.

This enabled us to award £687,179 in research grants. Expenditure on our other charitable activities also increased, as we held a scientific workshop; contributed to research networks; and continued to develop our social media activity to raise awareness of epilepsy and the need for research into the condition. We continued to keep our fundraising costs and expenditure under tight control. During the year we allocated £25,000 from the

designated research fund to support research. This designated fund was set up to ensure that monies are available to maintain an acceptable level of research grants should we experience an unexpected drop in income in any given year.Legacies are the main area where income can vary substantially from year to year. During the year the office relocated, which resulted in a substantial annual saving on office costs.

Financial summary

The financial information on this page is a summary extracted from the accounts of Epilepsy Research UK for the year ending 31st March 2016.

The summarised accounts may not contain sufficient information for a full understanding of the financial affairs of the charity. For further information, the full annual accounts, the auditors’ report on those accounts and the trustees’ annual report should be consulted. Copies of these can be obtained from Epilepsy Research UK, PO Box 3004, London W4 4XT. The annual accounts were approved by the trustees on 16th June 2016 and the annual report and accounts have been submitted to the Charity Commission. The accounts have been audited and have been given an unqualified report by our auditors.

Signed on behalf of the trustees

Judith Spencer-Gregson Honorary Treasurer 16th June 2016

income

expenditure

Individuals £305,762

Legacies £426,044

Fundraising events £328,704

Trusts & companies £88,455

Interest £24,818

Research grants not required £62,426

£1,236,209

Research grants £687,179

Other charitable activities £369,437

Fundraising costs £205,082

£1,261,698

25%

35%

27%

7%

2% 5%

55%

29%

16%

transforming lives through research in 2016

Chairman’s report

IN 2015-16, WE HAVE, ONCE AGAIN, MADE A SIGNIFICANT INVESTMENT IN EPILEPSY RESEARCH OF THE HIGHEST CALIBRE. A TOTAL OF SIX AWARDS WERE MADE THIS YEAR AND WE ARE GENUINELY EXCITED ABOUT THE CONTRIBUTION THEY WILL MAKE TO THE FIELD OF EPILEPSY.

Topics include brain cell transplantation as a possible treatment for epilepsy, the effects of sleep problems in infants with epilepsy on their cognitive development, and improving access to surgery for people with tuberous sclerosis. You can read more about these studies later in this review and we look forward to updating you as they progress.

I am particularly encouraged that we were able to support two fellowships this year. These are our flagship awards and allow us to invest in promising young clinicians and scientists at the start of their research careers. Previous experience suggests that support from Epilepsy Research UK at this stage is highly influential in

keeping these talented individuals involved in epilepsy research in the longer term. I wish Dr Sukhvir Wright, at Aston University, and Dr Alfredo Gonzalez-Sulser, at the University of Edinburgh, every success for their fellowships and for a long and fruitful career in epilepsy research.

We were proud to have the opportunity to announce these fellowships, along with our new pilot and project grants, at a supporter reception held at No. 11 Downing Street in May, during National Epilepsy Week 2016. These high-profile events have now become an annual fixture in the Epilepsy Research UK calendar. The energy and enthusiasm when our supporters and researchers meet is palpable,

Trustees’ statement

Auditors’ statement

and there is a genuine sense of shared goals.

In other news, the UK Medicines and Healthcare products Regulatory Authority (MHRA) launched a new toolkit in February 2016 to raise awareness about the risks of taking valproate medicines during pregnancy. These are commonly prescribed drugs for epilepsy but are associated with abnormalities in children exposed to them in the womb. Epilepsy Research UK funded some of the early research in this field and made an important contribution to the development of the MHRA toolkit, which is already impacting upon clinical practice.

March 2016 witnessed our 11th international expert workshop on tumour-associated epilepsy, which you can read about in more detail elsewhere in this review. It has been my great privilege to attend many of

our expert workshops over the years and, in my view, this was the most successful to date in terms of interaction and commitment of the participants. I look forward to their continued efforts to raise awareness and funding in this important area.

2015-16 was another good year in terms of overall income, thanks entirely to the dedication of our staff and the unstinting commitment of our incredible supporters. We continue to fund high quality, ground-breaking science and have ambitions to fund even more in future. In that sense, epilepsy research needs you now more than ever. Your continued efforts are crucial to improving epilepsy care – because together we really can transform lives.

Dr Graeme Sills Chair of Trustees

As auditors for Epilepsy Research UK we have reviewed the summarised accounts and consider that they are consistent with the full accounts on which we gave our opinion.

A Davies ACA Senior Statutory AuditorF A Magee & Company, Chartered Accountants and Statutory Auditors, Wimbourne House, 4-6 Pump Lane, Hayes, UB3 3NB

16th June 2016

PO Box 3004 London W4 4XTt 020 8747 5024e info@eruk.org.uk w www.epilepsyresearch.org.uk

Registered in England charity no.1100394

Epilepsy Research UK is a member of the Association of Medical Research Charities

Fundraising a huge thank you to all our supporters

Epilepsy Research UK is the only organisation that is dedicated to funding research into all aspects of epilepsy, across the UK. We support the best quality research through an annual grant round, prioritising areas of urgent need such as diagnosis, treatment, prevention and quality of life. This year we awarded six exciting new grants, which you can read about below.

Even with controlled seizures, life for people with epilepsy can be unpredictable and restricted. Only through research can more effective therapies be discovered and lives improved.

Recent developments in drug therapy and medical scanning, along with major breakthroughs in the study of the human genome, have greatly improved our understanding of the causes of epilepsy; however so much more work needs to be done. Epilepsy Research UK funding is crucial to future advances, which will only be possible with your generous support. Together, we can transform lives.

This year we awarded six grants, details of which are outlined below.

Dr Alfredo Gonzalez-Sulser University of Edinburgh Fellowship awarded of £250,000

BackgroundTemporal lobe epilepsy (TLE) is the most common form of epilepsy seen in adults, and it is characterised by seizures that originate within a unit of structures (including the hippocampus) known as the hippocampal formation. This network plays a crucial role in memory, spatial awareness and the control of attention.

TLE is difficult to treat with existing anti-epileptic drugs, and surgical methods are too often neither appropriate nor effective. Current therapies also carry a significant risk of adverse side effects, which can impact greatly upon a person’s quality of life. There is an urgent need for better, more targeted, treatments for TLE that are more widely effective and have fewer unwanted effects.

Optogenetics is a cutting-edge technique that allows researchers to control the activity of specific sets of neurons using light. It is a highly skilled method that is being used around the world to increase our knowledge

of epilepsy. Clinical trials using optogenetics to treat other conditions, such as blindness, are also underway.

The studyDuring this fellowship, Dr Gonzalez-Sulser will focus on an area of the brain called the medial septum, which has a powerful influence over the activity of the hippocampal formation. He will use optogenetics to control select populations of medial septal neurons, to try and block seizures in the hippocampus of animals with TLE. One of the advantages of targeting the medial septum is that it could be used to modulate the entire network of neurons that generate seizures in TLE, not just the seizure focus (where seizures originate). This will potentially yield a more effective treatment with fewer adverse effects.

SignificanceIf successful, the findings from this fellowship could potentially lead to a new treatment for TLE in the next 15-20 years. The study will also increase our knowledge of brain circuits in epilepsy, which could improve existing treatments such as gene therapy and deep brain stimulation.

A new approach to treating temporal lobe epilepsy

Investigating a new model of genetic epilepsy

Professor David Wyllie University of Edinburgh Project grant awarded of £137,230

BackgroundNeurons communicate with each other using special chemicals known as neurotransmitters, which are classified as being either excitatory (meaning that they cause neurons to ‘fire’), or inhibitory (meaning that they cause neurons to stay ‘silent’). The main excitatory and inhibitory neurotransmitters in the brain are called glutamate and GABA respectively, and they act via protein structures called receptors (which they ‘activate’). A fine balance between excitation and inhibition is needed for the brain to function properly. If, for some reason, there is too much excitation, signalling becomes uncontrolled and there is a risk of seizures.

The studyMutations in a gene called GRIN2A, which encodes a protein called GluN2A, can lead to a reduction in a type of receptor that is activated by glutamate. This can make people more susceptible to epileptic seizures, but the underlying mechanisms are not clear.

Professor Wyllie and his colleagues have managed to genetically engineer a rodent model that mimics the effects that a loss of GluN2A has. They now plan to use this model to record the small electrical signals generated when glutamate acts at its receptors, in order to:

• investigate how signalling is altered when GluN2A is reduced

• determine what interventions can be used to correct this altered signalling and potentially reduce the incidence of seizures

SignificanceThis research will give detailed insights into how neurons communicate in the hippocampus (an important memory structure in which seizures frequently originate), at both single cell and circuit levels. It is a knowledge-gaining project, but the findings could potentially pave the way for the development of new epilepsy treatments in the next 10-15 years.

Proceedings of SUDEP workshop published

Is inflammation in tuberous sclerosis a sign of epileptic activity?

Dr Manuela Pisch University College London Pilot grant awarded of £29,938BackgroundSleep problems early in life are linked to poorer cognitive (thinking skills) and social development (socio-cognitive development). Infants with epilepsy often experience sleep problems, but so far the association between epilepsy-related sleep problems and socio-cognitive development has not been investigated in this age group.

The studyDr Pisch, with colleagues at Great Ormond Street Hospital, aim to explore 1) whether epilepsy type influences the nature of the sleep changes seen in infants, and 2) whether different types of sleep change have different effects on socio-cognitive development.

The researchers will recruit the families of infants with newly-diagnosed epilepsy, and will visit them twice during the project: once within two weeks of diagnosis and again when the child is 12 months old.

At both visits the infant’s cognitive, language, movement, memory and information processing abilities will be assessed. Details

about the child’s epilepsy, including their seizure frequency and treatment regimen, and information about the parents’ well-being, will also be obtained. At visit one, parents will be asked to complete a questionnaire asking about their social and economic circumstances. This will be used to help ensure that any associations made during the project are due to sleep variation and not the other factors.

At the first visit parents will be trained to use an actigraph (a wrist-watch/ankle device that monitors the nature and quality of sleep), and they will be asked to record their child’s sleep over one week. They will also be shown how to complete a sleep diary for their baby. All sleep information will be sent to the investigating team.

The researchers will examine the data for patterns of abnormal sleep in different forms of epilepsy, and links between any sleep variations found and socio-cognitive development scores. They will use existing ‘normal’ sleep data from infants without epilepsy for comparison.

SignificanceThe findings of this pilot grant could ultimately lead to the development of sleep interventions that significantly improve outcomes for infants with epilepsy.

The link between sleep problems in epilepsy and socio-cognitive development

The research that we fund is often the first step in a long journey to developing new treatments. One way in which we gauge the success of these early-stage projects is to assess the amount of funding they attract from other funders, to progress the work.

In 2015 we conducted a study of the research funded by ERUK between 2009 and 2014, and found that, whereas we had invested in £2,784,854 on these grants, they had leveraged a further £9,234,337 in follow-on funding from other organisations. Therefore, every pound spent by ERUK on epilepsy research had generated a further £3.32 for the field.

This huge return on our investment demonstrates our ability to identify, at an early stage, innovative research that will bring real benefit to people with epilepsy.

As a member of the Association of Medical Research Charities, our research meets the gold standard; qualifying for support from Government’s Charity Research Support Fund. This gives universities a 28% (maximum) uplift on our grants to cover their overheads, meaning that all of our funding goes directly to research.

Professor Matthew Walker, at University College London, said: “The grant from Epilepsy Research UK has had an enormous impact on my research. It enabled us, not only to carry out experiments that have given us fundamental insights into the regulation of brain excitability, but also to secure funding from the EU, MRC and Wellcome Trust to expand our findings and hopefully to develop novel strategies for the treatment of epilepsy.”

Another indicator of the quality of the research we fund is the number of publications that arise from the work. Our study showed that 72 journal publications had resulted from ERUK’s 2009-2014 grants, 12 of which were in very high impact journals such as Brain, Nature and Journal of Physiology.

You can read more about these findings, along with the latest grant results and thoughts from our grant holders, in our ‘Research Reports 2016’. This can be downloaded from our website, or you can contact info@eruk.org.uk or 020 8747 5024 to request a copy.

In March 2016, Epilepsy Research UK hosted an expert international workshop, in Oxford, to identify key research priorities for the field of tumour-associated epilepsy (TAE).

The event, entitled ‘Tumour-associated epilepsy: bridging the translational gap’, brought together 27 leading experts from the fields of epilepsy and brain tumour, to examine the latest evidence surrounding TAE and identify research and clinical priorities to improve the management of the condition. Topics covered included risk factors; how epileptic activity arises; interactions between anti-tumour and anti-epileptic drugs; imaging and surgical techniques; and end of life care.

The meeting was a great success, and it generated many fruitful discussions and ideas. There was a fantastic interaction between the clinicians and scientists from both epilepsy and brain tumour disciplines, and a number of research priorities for TAE were identified.

The workshop delegates will now contribute to the development of a white paper for UK Government, requesting the necessary funds to address these priorities, and we also hope to

publish a synopsis of this white paper in a prestigious medical journal. In addition, the event has forged a number of collaborations, which we are confident will greatly assist in the advancement of the TAE field.

We look forward to updating you with further developments.

Dr Mark Cunningham (Newcastle University), who chaired the workshop alongside Dr Robin Grant (Western General Hospital in Edinburgh), commented:

“The workshop was a real success in that it brought together scientific and clinical experts to address the topical issue of tumour associated epilepsy. In addition to a number of illuminating presentations, we had a series of excellent discussion sessions that helped us identify the key areas that need to be urgently tackled by both clinicians and scientists working in this area of research. By addressing these key areas we hope that patients suffering from tumour-associated epilepsy will benefit in the future.”

A good investment

Research grants awarded in 2015/16

ERUK international expert workshop helps to advance the field of tumour-associated epilepsy

Cell transplantation to treat epilepsy

The immune system and epilepsy

Dr Sukhvir Wright Aston University and Birmingham Children’s Hospital Fellowship awarded of £211,011

BackgroundThe immune system protects the body from harmful agents, but occasionally it mistakenly produces antibodies that destroy normal, healthy cells/tissues. This is called ‘autoimmunity’, and the antibodies are known as ‘autoantibodies’.

Autoimmune diseases are often treated with drugs that dampen the body’s immune response (immunotherapy), such as steroids. Some people with epilepsy respond well to steroids, and this has led scientists to believe that some forms of epilepsy might be autoimmune.

To date, a number of epilepsy ‘autoantibodies’ have been identified, but how they cause epilepsy is not known. The ways in which immunotherapy works to control seizures are also not clear. Steroids have a lot of unwanted side effects that limit their use, particularly in young children, and more targeted treatments are needed. These can only be developed once a better understanding of autoimmune epilepsy has been gained.

The studyDr Sukhvir Wright’s fellowship will focus mainly on an epilepsy-linked antibody known as ‘NMDAR-Ab’, which targets protein structures called NMDARs that are crucial to making neurons ‘fire’. Current thinking is that NMDAR-Abs particularly target NMDARs on inhibitory neurons in the brain, blocking their function. The effect is too much excitation of neurons and a risk of seizures.

Dr Wright and her team will use a range of methods, in both epilepsy models and human brain tissue, to examine how NMDAR-Abs affect NMDARs and cause epileptic activity. They will then take a number of steroid compounds and examine how these ‘rescue’ NMDARs and control seizures.

SignificanceThe findings from this fellowship will hopefully lead to the refinement of immune-targeting drugs, so that they are effective but with minimal side effects. This could happen in as little as 3-5 years, and it will greatly improve quality of life.

Dr Wright’s fellowship has been supported by our memorial funds. We would like to thank all our memorial fund supporters for their tremendous commitment and generosity over the past year.

Professor Liam Gray Cardiff University Pilot grant awarded of £30,000

BackgroundThe loss/dysfunction of inhibitory neurons called interneurons in the hippocampus of the brain is one of the earliest changes in temporal lobe epilepsy (TLE). In theory, it should be possible to replace lost/damaged interneurons with new ones, and experimental attempts to do this have been promising. Researchers have successfully transplanted human stem cells that generate interneurons into the brains of epileptic mice, and they have seen a 90% reduction in seizures.

However, the animals used in these studies did not have functioning immune systems, which was necessary to ensure they did not reject the transplanted cells. In human TLE the hippocampus is very inflamed, and long-term suppression of the immune system is not feasible. If this is to become a realistic treatment for TLE, researchers must understand what signals are exchanged between the inflamed hippocampus and transplanted cells in humans, and how this affects the survival, development and integration of the new interneurons.

The studyA 3D cell culture is an artificially-created environment, in which cells are permitted to grow or interact with their surroundings in three dimensions. It is a very useful tool for studying the functions and interactions of different cells/tissues in health and disease. Professor Gray and colleagues have recently developed 3D cultures of human epileptic brain tissue. These survive healthily for 6-8 weeks and show all of the hallmarks of inflammation seen in TLE. The team has added human stem cells to these cultures, and has found that, although many die, some survive and show signs of early maturation.

During this grant the group will try and identify the optimum conditions for survival and development of the transplanted cells.

SignificanceThis study will be vital to the progress of this treatment to human clinical trials of TLE, which Professor Gray believes could potentially be in the next 3-5 years.

Professor Alexander Hammers King’s College London Pilot grant awarded of £30,000

BackgroundTuberous sclerosis is a rare genetic condition that causes growths called tubers to form in different parts of the body. Due to the frequent involvement of the brain, most people with tuberous sclerosis also develop epilepsy, and this is often resistant to anti-epileptic drugs.

If a seizure-causing tuber is identified, it can potentially be removed surgically; however the process of identification is complex and invasive. This limits the number of people who are referred for surgery.

The studyStudies have revealed that tubers removed during surgery show signs of long-standing inflammation. Here, Professor Hammers and his colleagues want to find out if inflammation in tubers is in fact a marker that can be used to pinpoint those that are capable of inducing seizure activity. This would be a lot easier and less arduous for the patient than looking for signs of epileptic activity in tubers directly.

The team will use a combination of imaging techniques called PET and MRI to look for inflammation in brain tubers, in 12 people with tuberous sclerosis and drug-resistant epilepsy, aged between 10 and 45 years. For each subject, tubers that show evidence of inflammation will be carefully mapped, and information from detailed EEG scans (which record electrical activity in the brain) will be used to find out if the locations of the inflamed tubers correspond with the areas in which seizures are occurring.

SignificanceIf the results of this pilot grant suggest that inflammation in tubers is a reliable marker of epileptic activity, and these findings are confirmed in further studies, PET-MRI imaging could potentially give many more people with tuberous sclerosis the chance to benefit from surgical treatment. The impact of this funding could be seen in the next 3-5 years.

Epilepsy is one of the most common neurological conditions.

z Epilepsy is a tendency to have recurrent seizures caused by disruptions to the normal electrical activity of the brain.

z Over 600,000 people in the UK have a diagnosis of epilepsy – that’s nearly 1%.

z 32,000 people are newly diagnosed with epilepsy in the UK each year – that’s about 87 people every day.

z Each year approximately 1,100 people die as a result of epilepsy.

z Epilepsy can be caused by a stroke, a head injury or an inherent genetic defect, but in over 60% of cases there is no known cause.

z About 30% of people with epilepsy have seizures that cannot be controlled by medication.

z There are over 40 different types of seizure, ranging from momentary blank spells to major convulsions.

Other research activities and outcomes

“This research will increase our understanding and knowledge of how the immune system may be implicated in the production of seizures.”

“Our data will indicate whether offering a standard sleep intervention would be a low-cost and effective way to avoid cascading consequences of early sleep problems on subsequent socio-cognitive development.”

“This is an exciting project that will give significant insights into the feasibility of cell transplantation for treating seizures and cognitive problems in patients with temporal lobe epilepsy.”

“Individuals who carry mutations in genes that encode receptors activated by glutamate can suffer from a variety of disorders, many of which are associated with epilepsy. This project funded by ERUK allows us to extend our (previous) work to a pre-clinical model that is a direct correlate of epileptic encephalopathy.”

“Forward-thinking strategies for the most difficult-to-treat types of epilepsy are desperately needed. I will test whether controlling the activity of entire seizure-generating networks, as opposed to just the seizure foci, can be a more effective treatment to block seizures,”

“If the new PET-MRI scanner methods help us find where these patients’ seizures come from, many more will be able to undergo surgery in the future.”

In January of this year, we were delighted to see the proceedings of our 2014 expert workshop, ‘SUDEP: time for prevention. Evidence and clinical translation’, published in a special supplement of the eminent journal, Epilepsia.

The publication explores the very latest evidence surrounding sudden unexplained death in epilepsy (SUDEP)* - including who is at risk; the role of genes; the effectiveness of current interventions (e.g. seizure alarms); how and when people should be informed about SUDEP; and the impact that SUDEP has on both families and physicians – and it is likely to be the seminal work in the SUDEP field for many years to come. Our sincere thanks go to Dr Lina Nashef, at King’s College London, who was responsible for the scientific content of the workshop and oversaw the publication.

If you wish to be sent a copy of the proceedings, please email info@eruk.org.uk with your full name and address. Alternatively, you can find them online by searching for: Epilepsia, 57(Suppl. 1): 1-53, 2016.

In recent years, Epilepsy Research UK has awarded three research grants to advance our understanding of SUDEP and other causes of epilepsy-related death:

• Dr Robert Delamont, at King’s College London, was awarded a £27,998 pilot grant in 2013 to look for risk factors associated with SUDEP.

• Professor John Jefferys, at the University of Oxford, was awarded a £149,752 project grant in 2014 to explore why SUDEP happens and whether or not it can be prevented.

• Dr Susan Duncan, at Western General Hospital Edinburgh & Muir Maxwell Epilepsy Centre, was awarded a £143,872 project grant in 2015 to look for traits that may be associated with an increased risk of epilepsy-related death.

You can read more about these grants on the Epilepsy Research UK website: www.epilepsyresearch.org.uk

transforming lives through research in 2016

*Sudden unexpected death in epilepsy (SUDEP) is the unexpected death of a person with epilepsy, who was otherwise healthy, and for whom no other cause of death can be found. It is a rare, but devastating, outcome for between 500-600 people in the UK each year.