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Epilepsy Research UK Newsletter

Record funding for epilepsy research 2018 has been an unprecedented year with Epilepsy Research UK able to invest over £1 million in 12 outstanding research studies. This is an excellent achievement and also an exciting indication of what more we can achieve for epilepsy research throughout the UK with the further growth of the charity. The projects selected for funding cover a wide variety of topics, from understanding epilepsy at the most basic cellular and molecular level to developing new treatment options, to using the latest generation of home EEG and smartwatches to forecast seizures. As always, we received many research applications, and only the best projects were selected following a rigorous review process. At our reception at the Royal Society in National Epilepsy Week, our new grant awardees spoke passionately about their research and its potential to benefit those living with epilepsy. We are confident that the research funded will make a significant contribution to the understanding, diagnosis and treatment of epilepsy. The researchers’ evident commitment to their work was clearly matched by the determination of the supporters present to continue to help us work towards our goal: to transform lives through research.

It is only due to the immense generosity of all who support us, in whatever way they can, that we have been been able to fund so many potentially ground-breaking research projects this year. We are profoundly grateful to all our supporters. Research plays a key role in alleviating and hopefully curing this devastating condition.

Autumn 2018

RESEARCH GRANTS AWARDED IN 2018 Predicting seizure occurrence using wearable device technology Prof Mark Richardson King’s College London Project grant of £148,372 “Living with epilepsy involves living with the uncertainty about when the next seizure will happen. Research work has been going on for nearly 30 years, to find ways to ‘forecast’ when an individual person will have their next seizure. Excitingly, some fantastic progress has been made in the last few years. We hope to build on this progress, to find a way to forecast seizures using the latest generation of home EEG and smartwatches. We hope to see seizure forecasting become a reality within the next few years.” Prof Mark Richardson

Background Some people with epilepsy notice they are more likely to have seizures if they are tired, stressed, or have missed medication. If we could measure the influence of these factors on the brain, we might be able to use this information to forecast when seizures are more likely to happen. Recently, it has been shown that signals from EEG can forecast when the next seizure will happen. However, this approach requires EEG to be recorded all the time, which is not likely to be acceptable.

The study It is now possible to record your own EEG easily, using a cap attached to a miniature recording system. Prof Richardson believes that people with epilepsy could easily learn how to record their own EEG in a few minutes. In this project, researchers will study a group of people with epilepsy over several months. They will collect information about sleep, stress and medication. Participants will be asked to record their own EEG at home for 10 minutes, twice every day, and will wear a smartwatch device that records movement and heart rate. They will also note when they take medication and when seizures occur. The researchers aim to combine all of this information to see if it could be used to reliably forecast when seizures are likely to happen.

transforming lives through research

They will test whether signals in the twice-daily EEG, and signals from the smartwatch regarding sleep and stress, forecast when seizures will happen.

Significance One of the most difficult aspects of epilepsy is that seizures seem to strike ‘out of the blue’, with no warning. If we could forecast when seizures are more likely to happen, it could make a major difference for many people with epilepsy. The researchers hope that outcomes from this study will enable seizure forecasting within the next few years. Prof Richardson’s project has been supported by our memorial funds. Our heartfelt thanks go to all our memorial fund supporters for their tremendous commitment and generosity over the past year.

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

Dr Vincenzo Marra, University of Leicester Project grant of £56,852

“Epilepsy and migraine occur together more often than 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 will enable 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.” Prof Kirill Volynski

“I am interested in how the brain can handle an enormous amount of information with very little room for error. I believe that understanding how the brain can perform such an astonishing task can help us provide therapies to reduce the risk of seizures, which occur when the brain is incapable of maintaining its activity under control.” Dr Vincenzo Marra

Background Epilepsy and migraine exhibit substantial similarities: they are both episodic, several antiepileptic drugs are effective in migraine treatment, and both seizures and migrainous headaches can be induced by brain trauma. These similarities suggest that epilepsy and migraine share mechanisms in common. Indeed, mutations of the same genes can lead either to epilepsy or to a severe form of migraine with aura. However, the mechanisms that steer the brain to either a seizure or an attack of migraine remain very poorly understood.

The study Both focal seizures and some features of the aura (flashing lights or tingling sensations) that many people with migraine experience are due to excessive firing of neurons in the cortex.

Why is it that this excessive firing of neurons, known as hyperexcitabilty, rapidly invades other brain areas in epilepsy but not in migraine? This is an important question that the researchers will try to answer in this project. In particular, they will try to understand why some brains are susceptible to seizures whilst others are prone to auras. Can some patterns of excitation trigger a seizure whilst others trigger the correlate of aura in the same brain? How do genetic alterations that lead to both epilepsy and migraine change the relationship between seizures and spreading depression? To answer these questions they will use methods developed in collaboration with other UCL researchers based on calcium imaging of neuronal activity in awake mice to image the development, propagation and termination of seizures with unprecedented spatial and temporal resolution.

Significance Understanding the relationship between seizures and aura mechanisms will undoubtedly lead to new therapeutic targets for both epilepsy and migraine. It will also potentially shed light on the hypothesis that an aura-like mechanism plays a role in sudden unexpected death in epilepsy (SUDEP).

Dr Simon Keller, University of Liverpool Project grant of £73,220 “Being able to predict whether a patient with epilepsy will respond to antiepileptic drug therapy will increase the likelihood of bringing seizures under control sooner through an earlier exploration of alternative or adjunctive treatments. Imaging the brain’s structural and functional networks may offer that possibility.” Dr Simon Keller

Background The first line of treatment for people with epilepsy is antiepileptic drug (AED) therapy. AED treatment fails to control seizures in over 30% of people with epilepsy. The reasons why treatment fails in these patients are unknown, and there is currently no way of predicting which patients will not respond to treatment. If we knew which patients would not respond to AEDs from the point of diagnosis of epilepsy it may be possible to explore alternative or adjunctive therapies sooner for these patients. Bringing seizures under control as early as possible is the most important treatment factor.

The study Looking at brain networks is crucial in epilepsy as epileptic seizures arise because of abnormal

brain networks. Dr Keller and colleagues will use specialised magnetic resonance imaging (MRI) scans to investigate how each part of the brain is connected i.e. how the brain is networked, in people with epilepsy. Investigation of brain networks using MRI provides information on abnormal brain structure and function that cannot be detected using standard clinical investigations. This study will apply sophisticated brain network imaging methods to MRI scans from people with a new diagnosis of focal epilepsy and people with idiopathic generalised epilepsy and compare them to people without epilepsy. The main goal of the study is to investigate whether abnormal brain connectivity underlies persistent seizures after AED therapy, and whether network-based MRI analyses can



Epileptic seizures occur when too many nerve cells are active at the same time. All nerve cells communicate with their neighbours by releasing chemicals called neurotransmitters. Inside nerve cells, these chemicals are stored in small compartments called synaptic vesicles. Recently, we found that epileptic brains reorganise their synaptic vesicles and we believe this may be an attempt to stop the nerve cells from firing at the same time (synchronously). Dr Marra wants to investigate the direct link between vesicle reorganization and epileptic seizures.

Establishing the functioning of synaptic vesicles will greatly advance our understanding of the cellular and molecular bases of epilepsy. Most anti-epileptic drugs act on the electrical properties of nerve cells, affecting neuronal communication at all times. Organisation of synaptic vesicles is crucial only when activity becomes very high, which may be the brain’s strategy to reduce the risk of a seizure without affecting cognitive functions. In the long-term, researchers hope this study will provide new therapeutic targets for treatment of excessive neuronal activity in epilepsy and may prevent seizures.

The study

Imaging networks in the brain to predict medication seizure control

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A new subcellular therapeutic target for seizure prevention

First, the researchers will investigate whether vesicle reorganisation is a common phenomenon across different forms of epilepsy. To do so, they will study mice with genetic mutations known to cause epilepsy in humans alongside models of acquired epilepsy. They will then record electrical activity directly from nerve cells in brain tissue obtained from healthy and epileptic mice. Using drugs that cause vesicle reorganization, researchers will then manipulate the position of vesicles and record electrical activity directly from nerve cells. If their hypotheses are correct, these drugs will have little or no effect on healthy tissue but will reduce frequency and length of seizure-like activity in brain tissue obtained from animal models of epilepsy.

Do more experienced hospitals have improved outcomes in status epilepticus?

reliably identify the individual patients who will fail to respond to treatment. This work therefore seeks to identify reliable non-invasive brain imaging biomarkers of AED treatment, an important research benchmark in epilepsy.

Significance Brain imaging represents an ideal method for the identification of biomarkers of treatment outcome given that most people with epilepsy routinely receive MRI in the context of their clinical care. This research is important because if a reliable brain imaging biomarker of treatment outcome is identified, our methods could tell us which patients will not respond to first-line treatment. This information could be used by clinicians to counsel patients and consider alternative or adjunctive treatment options from an earlier stage.

transforming lives through research

This image comes from Dr Marra’s ERUK-funded preliminary study and shows the part of the synapse sending information (red) and the part receiving it (brown). Dr Marra is interested in the position of synaptic vesicles, the small circles in the red part of the synapse. The structure shown is over 100 times smaller than the very tip of an eyelash.


SYNAPTIC VESICLES In order to conduct the millions of tasks the human brain completes every day, nerve cells must communicate with each other. Neighbouring cells are connected by junctions, which are called synapses. Chemical messengers, called neurotransmitters, must travel from one cell to another across a synapse in order to deliver a message. Before travelling across synapses, these chemical messengers are stored inside nerve cells in sack-like compartments, called synaptic vesicles. Synaptic vesicles are tiny – over 100 times smaller than the very tip of an eyelash. Despite their small size, vesicles are thought to play an important role in epilepsy. In past work funded by Epilepsy Research UK, Dr Vincenzo Marra at the University of Leicester has discovered that vesicles reorganise themselves in brains with epilepsy. However the direct link between vesicle reorganisation and epileptic seizures is not yet fully understood. When developing new drugs and treatments for epilepsy, scientists must first identify where they think the drug should target. This year two of our new grants are investigating vesicles in epilepsy. We hope that the work of researchers Dr Vincenzo Marra and Prof Peter Oliver may lead to new drug targets in the next five to ten years.

Dr Tonny Veenith, Queen Elizabeth Hospital, Birmingham Pilot grant of £5,000

Background Prolonged seizures, known as status epilepticus (SE), have a significant morbidity and mortality, with survivors exposed to the risk of severe long-term cognitive deficits.

The study The researchers will investigate whether patient outcomes are affected by organisational expertise and familiarity with managing SE. Currently there are no studies which link outcomes from SE to institutional experience using quantity of patients (known as patient

volume). Patient characteristics data will be linked to ICU and hospital characteristics.

Significance If an association between volume and outcome is found, this would provide evidence for a further study linking structures, processes and outcomes leading to improved training or centralisation of services for patients with epilepsy. The researchers believe that, after more detailed research, improvements in patient outcomes would be likely over the next 5-10 years.

transforming lives through research

3D diagram of a synapse showing neurotransmitter being released

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Surgical techniques to improve seizure control after a brain tumour Mr Ashan Jayasekera, Newcastle University Fellowship grant of £173,924


“Seizures for patients with brain tumours are common, debilitating and difficult to treat. This project will define the role of a non-invasive scanning technique, magnetic resonance spectroscopy, in mapping the areas responsible for seizures and guiding surgical resections to improve seizure control for patients and limit morbidity”


Cells in the brain must communicate with each other to function correctly. They do this using chemical messengers called neurotransmitters. Neurotransmitters travel to neighbouring cells through junctions called synapses. Glutamate is the most common neurotransmitter in the body. Although glutamate is vital for the healthy functioning of the brain, research has found abnormal patterns of glutamate immediately before epileptic seizures. In fact, some epilepsy drugs target glutamate receptors in the brain in order to prevent seizures. When someone has a brain tumour, this sometimes causes seizures, even after surgery to remove the tumour. Mr Ashan Jayasekera, a neurosurgical trainee, will be investigating whether high levels of glutamate cause seizures in patients with brain tumours. If this is the case, surgeons will be able to map brain tumour removal surgery so that patients will have fewer seizures.

Management of patients with status epilepticus in intensive care Dr Vasiliki Tsirka Royal London Hospital, Barts’ Health Project grant of £149,290 “This study will help identify the most appropriate way to manage patients with status epilepticus, optimise the investigation methods and monitor response to treatment.” Dr Vasiliki Tsirka

Background Seizures are common in patients with a particular form of brain tumour. They are extremely debilitating, and have been shown to lower the quality of life of patients, both physically and mentally. They are also very difficult to treat. The most effective treatment remains resecting as much of the tumour as is possible and importantly removing the seizure generating ‘peri-tumoural’ region. However, current approaches to ‘map’ this region have had variable success and are invasive.

areas with high glutamate are indeed the seizure generating ‘epileptogenic’ tissue responsible for patients’ seizures.

The study


During this fellowship Mr Jayasekera will define the role of magnetic resonance spectroscopy (MRS), a non-invasive scanning technique, in identifying and ‘mapping’ the regions of brain around a tumour, which are responsible for patients’ seizures. His fellowship will investigate whether high levels of a molecule that excites brain cells, glutamate, can pick out the areas of the brain that generate seizures. By measuring how much glutamate there is in the tissue the surgeon is planning to remove pre-operatively, and then studying the electrical activity of that same tissue after it has been removed by the surgeon, Mr Jayasekera hopes to confirm that


We know that the more ‘abnormal’ tissue removed by the surgeon, the more likely a patient is to be free from seizures. However this carries with it the risk of disability from injuring healthy brain. What is needed is a more scientific approach to define which regions surrounding the tumour are responsible for patients’ seizures so that these can be removed and healthy brain spared. According to Mr Jayasekera the importance of this work is that it will allow surgeons to non-invasively map the ‘unhealthy’ seizure generating regions of the brain around these tumours and plan their surgeries to improve seizure control for patients and limit morbidity.

New purpose for historic epilepsy brain collection

Prolonged epileptic seizures, so called status epilepticus, are a medical emergency as they carry a high risk of brain damage and death. Patients in status epilepticus require rapid and effective management. When the seizures are not controlled with initial medication, patients are treated in the Intensive Care Unit (ICU). Sometimes it is not possible to tell if patients are having ongoing seizures or not, but an electroencephalogram can record subtle seizures that cannot be detected by clinical examination, which can then be treated. Continuous electroencephalographic (cEEG) monitoring, although widely recommended for cases of refractory status epilepticus, is not a routine practice in the UK. The use of cEEG is limited by resource implications, and there is also uncertainty about the patient benefit. Specifically, it is not clear if cEEG affects the final outcome e.g. survival, side effects, other injuries, and quality of life.

Professor John Corsellis

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Brain tissue samples from people with epilepsy who died and had a post-mortem examination were systematically studied by an eminent neuropathologist, Professor John Corsellis between 1950 and 1997. He published important studies based on what became known as the ‘Corsellis collection’, one of the foremost and largest brain tissue banks. His epilepsy publications remain highly regarded and relevant to this day including seminal works on temporal lobe epilepsy and the brain alterations following uncontrolled epilepsy (status epilepticus).

UCL have recently acquired this historical tissue archive of epilepsy cases. Professor Thom’s aim is to restore, re-examine and catalogue the Corsellis epilepsy collection for use in modern research. This collection is valuable as epilepsy post-mortem tissue samples are becoming scarce due to medical advances and changing attitudes. Furthermore, the archive was collected from people with epilepsy alive from the 19th and 20th centuries, many with poorly controlled seizures, before effective medical and surgical treatments were available.

Up to date pathology and genetic methods can now be applied to re-examine and re-classify these cases to compare with modern surgical series. Over a two year period, Professor Thom and colleagues plan to restore this tissue collection, publish their findings and make this archive available to researchers. This collection will be known as the Epilepsy Research UK Corsellis Brain Collection.

transforming lives through research

“Perineuronal nets have been well demonstrated in experimental conditions as a key regulator in synapse formation and functions. The results from this project will provide solid evidence on how the mal-formation of perineuronal nets contribute to abnormal connections and development of epilepsy.” Dr Jessica Kwok

This study aims to investigate if cEEG improves short and long term patient outcomes in cases of refractory status epilepticus (RSE). The researchers plan to assess the yield of cEEG as a diagnostic tool in ICU for patients with RSE, compared with the current standard practice and explore if the use of this monitoring can significantly change length of patient stay, time required to achieve seizure control, mortality, and quality of life up to 12 months after discharge. This project will determine the feasibility of a larger study. cEEG is expensive, mainly due to the specialist manpower required, and this is one of the main factors for not implementing this service. The researchers plan to determine the cost-effectiveness for a cEEG service in ICU, comparing the cost with standard medical care, whilst taking into account the possible reduced length of stay and clinical interventions.

“The Corsellis collection is a unique archive of brain samples from patients with epilepsy, collected during the second half of the last century. Restoration and systematic cataloguing of this archive will facilitate modern day epilepsy research.” Professor Maria Thom

The study

Dr Jessica Kwok University of Leeds Project grant of £149,633

The study

Professor Maria Thom, University College London Project grant of £50,000


Exploring a new therapeutic target in absence epilepsy

Background In the adult brain, specialised extracellular structures called perineuronal nets (PNNs) are responsible for synaptic stabilisation. They are involved in the control of cell excitation, growth, and projections as well as cognition. When PNNs are abnormal, atypical synaptic stabilisation can occur, which may lead to the development of epilepsy. Absence epilepsy is a common form of childhood epilepsy. Increasing evidence has shown that the duration and frequency of seizures are correlated with cognitive impairment. Traditional antiepileptic drugs are not effective and can exacerbate absence seizures.

The study The researchers will investigate how alteration of PNNs induces epilepsy, particularly in absence epilepsy. With the use of an experimental model of absence epilepsy, they will measure the change of PNNs in different areas of the brain during seizure development. Initial assessment has already shown abnormalities of PNN formation in some regions involved in absence epilepsy. Additionally, researchers will investigate the mechanism of how PNN removal affects neuron function.


Significance This project will add knowledge to the best management of patients with long seizures admitted in ICU, focusing on the use of cEEG monitoring. It may also inform us how best to use this technology to improve patient outcomes.

transforming lives through research

The results of this study will be important in guiding the design of new pharmaceuticals to restore PNN function. This project will highlight the role of PNNs in the development of epilepsy, and will further our understanding of absence epilepsy. New strategies to improve treatment of epilepsy and associated cognitive deficits will also be identified.

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Electrical stimulation as a potential treatment for Juvenile Myoclonic Epilepsy

Nicotine patch treatment for Sleep-related Hypermotor Epilepsy

Dr David Carmichael King’s College London Pilot grant of £29,960

Prof Peter Oliver, University of Oxford Pilot grant of £20,000 “Our work will help to understand the role of a new epilepsy-causing gene in neuronal cell communication. This new ERUK funding will allow us to investigate how changes in this gene that cause disease influence fundamental aspects of brain cell function that are also common to many other epilepsies.” Prof Peter Oliver

Prof Deb Pal King’s College London Pilot grant of £30,000

“This pilot grant will start us on the journey to understanding how to manipulate brain activity at a large scale to reduce epileptic activity and allow for the non-invasive optimisation of electrical stimulation therapy.” Dr David Carmichael

Background Epileptic events are more likely in certain states of stress or sleep depending on the type of epilepsy. These states are characterised by connectivity between brain regions that can be measured using techniques like EEG and functional MRI (fMRI). Dr Carmichael has been studying the connectivity of the brain before epileptic events in patients with Juvenile Myoclonic Epilepsy (JME), and has found that in these patients activity in the brain areas that plan and control movement are locked together. The question is, if this high motor network connectivity is disrupted, can we alter the chance of epileptic events occurring? Transcranial electrical current stimulation (TES) is a cheap and safe method where small currents are generated in the brain which interact with brain activity using electrodes on the scalp. The project team have been using TES to alter brain connectivity and measure its effect using functional MRI.

“What could be easier than wearing a skin patch to treat epilepsy? Some people with a certain rare genetic epilepsy, sleep-related hypermotor epilepsy (SHE), can be effectively treated with the same nicotine patch that smokers use to help quit their habit. We’d like to find anyone with SHE in the UK and ask whether they would like to try this treatment. It might turn out to be life-changing” Prof Deb Pal

Background People with sleep-related hypermotor epilepsy (SHE) experience seizures and sleep disturbance that seriously impact many aspects of their quality of life. Almost 80% never achieve relief from symptoms using conventional treatments. However, nicotine patches have been effective in studies around the world.

The study In order to trial this treatment in the UK, researchers need to find out how many people might benefit and how they feel about the design of a future trial. Prof Pal and his colleagues are trying to answer a number of research questions: How many people in the UK have this condition? How many of those people have variations in specific genes (known as CHRNA4 and CHRNB2), making them eligible for nicotine patch treatment? Can their medical history predict these gene changes? And finally, what are their thoughts on nicotine patch treatment, a clinical trial, and on what the most important outcome measures are?


The study The researchers will bring together their new understanding of JME and use of TES to obtain preliminary evidence that they can normalise brain activity and prevent or interrupt seizures noninvasively in a well-defined syndrome. They will initially study patients that either have not received medication or have a poor response to medication and so have electrical discharges on EEG. They will test a number of conditions that alter the connectivity and excitability of the motor cortex while recording EEG to monitor the effects of the stimulation. Following this they will adjust the stimulation protocol if required and then scan ten patients with EEG-fMRI while undergoing TES. They can then measure the correspondence between any alterations in connectivity in the motor network and epileptic events.

SHE was the first type of genetic epilepsy, discovered in 1995. However, despite this there have not been any precision medicine treatments to date. This study attempts to remedy this situation and prepare the ground for the next stage of research: a randomised controlled trial to evaluate evidence of effectiveness and acceptability of nicotine patch treatment for SHE. The results of this study will inform researchers as to which people with SHE have the specific gene mutations, whether genetic testing is necessary, and how feasible a precision medicine approach is to treating SHE. Results will be available within two years and may inform future research into treatment.

Significance Electrical stimulation is currently used as a treatment for epilepsy however its efficacy has been limited in part because we don’t understand how to use it to modify an individual’s brain activity. We aim to demonstrate a non-invasive approach to measure the effect of electrical stimulation and provide preliminary data to show how it might be used to develop treatments.

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A new role for epilepsy gene

transforming lives through research

Background It is now possible to sequence human DNA much more quickly and cheaply than 10 years ago, and as a result, new genes that cause epilepsy are being discovered. One of the first that was identified using this method is called TBC1D24. Changes in this gene in

some people cause a range of neurological disorders, including myoclonic epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). The function of this protein and why it causes epilepsy and other neurological problems is still not understood.

The study To investigate the role of TBC1D24 in the brain, the researchers have recently identified other proteins that can bind to TBC1D24 in neuronal cells. One of these is part of a

large group of proteins that control the content of cellular ‘packages’ called vesicles. These structures are essential for normal cell function and also for communication between neurons. The researchers suggest that changes in TBC1D24 alter the movement and size of these vesicles, which results ultimately in seizures. They will study this using neuronal cells in a dish in addition to mice that contain the same changes in the TBC1D24 gene that are found in humans.

ERUK at Parliament It has been a busy year for ERUK at the Houses of Parliament at Westminster. We have been involved in the All Party Parliamentary Group (APPG) on Epilepsy, the APPG on Brain Tumours and in launching Evidence Week. The most recent meeting of the APPG on Epilepsy involved discussion on the current debate around Personal Independence Payments (PIP). The meeting gave several people with epilepsy an opportunity to share their personal experiences of PIP payments with MPs and other attendees. ERUK’s 2018 Fellow, Mr Ashan Jayasekera, was able to attend the APPG on Brain Tumours meeting at Portcullis House in July, led by the Brain Tumour Research charity. During the meeting, we were able to hear from patients and their family members who have been affected by brain tumours. The March APPG on Epilepsy raised awareness of the condition and the work of the various charities in the sector, highlighting to MPs the issue that face people with epilepsy and their families. Representing ERUK, our Research Manager Caiomhe Bennett was able to speak to a number of MPs about the work that we do and the impact that research can have on the lives of people living with epilepsy.

Epilepsy Research UK was also invited to speak at the launch of Evidence Week in the Churchill Room at the House of Commons. Evidence Week, run by the organisation Sense About Science, aimed to convince politicians to make good use of evidence and expertise to help shape regulations and policies. The launch was attended by MPs, peers, and parliamentarians, as well as representatives from charities, businesses, and academia, who all came together to discuss the importance of evidence. Caoimhe gave a statement on behalf of ERUK about epilepsy, the work of the charity, and the recent media coverage on Billy Caldwell and medical cannabis.

transforming lives through research

Significance Errors in the communication between cells in the brain, are thought to cause the seizure events that occur in epilepsy. This project will help us understand a fundamental aspect of neuronal cell function common to all human disorders characterised by seizures. Investigating these shared pathways may lead to therapeutic targets applicable to patients in five to ten years.

Cannabis oil for epilepsy in the news Whilst there is evidence that medical-grade preparations of an active ingredient of cannabis, cannabidiol, can be beneficial in some types of epilepsy, cannabis oil itself cannot be considered a safe or effective treatment. This is due to the variety of compounds found in over-the-counter cannabis oils, some of which may have harmful effects. People with epilepsy and their families should consult with their epilepsy specialist doctor for advice as to treatment options. If you would like to read ERUK’s statement on the use of cannabis-based products as a treatment for epilepsy, please visit the page https://bit.ly/2NYplv9 in the news section on our website. The statement includes information on: • Why medical cannabis for epilepsy has been in the news recently • Clinical trials and observational studies • Effectiveness, side effects and short term safety • Comparison to other licensed antiepileptic drugs • Over the counter preparations

We would like to thank Scientific Advisory Committee member Professor Hannah Cock for her assistance with the statement.

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Thank you to Dr Graeme Sills On behalf of us all at Epilepsy Research UK we would like to express our deepest thanks to Dr Graeme Sills who, having served the maximum term of six years, stepped down as Chair of the Board of Trustees at the end of last year. Graeme first became involved with the charity in 2004 as a member, then as Chair of the Scientific Advisory Committee (SAC), before taking over as Chair of the Board of Trustees in 2011. During his time Graeme’s leadership and vision resulted in significant advancements of the charity’s profile and impact. Graeme also championed countless new initiatives, such as the introduction of our highly successful pilot grant scheme to support innovative early stage research.

We are enormously grateful to Graeme for his commitment to good governance and for his strategic, and sometimes daily, contribution to the charity over so many years. We hope he will never be far from reach and thank him for continuing his involvement with ERUK as a trustee this year. “I would like to thank Dr Graeme Sills for his inspired leadership and tireless work for ERUK over the last six years, culminating in a record-breaking year for research grants awarded. Graeme is a person of immense energy and charm, who is dedicated to improving the lives of people with epilepsy. We have benefited enormously from his wisdom, selflessness and hard work.” Matthew Walker, ERUK Chair of Trustees

5 minutes with...

Matthew Walker, ERUK’s new Chair of Trustees As you may already be aware, Professor Matthew Walker took up the position of ERUK’s Chair of the Board of Trustees at the beginning of this year. Matthew is Head of the Department of Clinical and Experimental Epilepsy and Professor of Neurology at UCL Institute of Neurology, and Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square, London, and is highly active in clinical and experimental epilepsy research. He is President Elect of the British Chapter of the International League against Epilepsy and is an ILAE Ambassador for epilepsy. Having served for five years on the SAC and been a trustee of the charity since 2011, Matthew is looking forward to taking ERUK forward in the next stage of its growth. Deborah Pullen, ERUK’s Director of Communications, explored in conversation with Matthew his vision for the charity:

Maxine Smeaton joins us as our new Chief Executive We are delighted to announce that Maxine Smeaton has joined us as our new Chief Executive. Maxine is an experienced commercial and not for profit business leader with a track record of successful delivery of transformational programmes, strategic fundraising development and communications campaigns. Her most recent roles have been as the Chief Executive of Blond McIndoe Research Foundation and interim Chief Executive of the Tuberous Sclerosis Association.

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“I am delighted to be joining ERUK at such a pivotal time. We have ambitious plans to increase our impact through greater investment, engagement with the research community and strategic collaborations. We are fortunate to have a talented and committed Team at ERUK, an engaged and forwardthinking Trustee Board and a Scientific Advisory Committee led by some the country’s leading scientific and clinical experts in epilepsy. I am currently getting out and about meeting our incredible supporters at ‘Meet the Researcher’ events across the country to talk about our plans for the future and to say an enormous thank you… without the involvement of our community, none of this research would be possible.”

“Epilepsy Research UK serves an immensely important role as the only charity in the UK dedicated to funding epilepsy research. It is critical that we ensure that the charity is in a position to continue to fund high quality research that will have an impact upon the lives of people with epilepsy. However, to fund the best research, the charity will need to expand, and to expand the charity will need to be bolder and more ambitious in the future.”

Our regional ‘Meet a Researcher’ events Our ‘Meet a Researcher’ events give you, our supporters, the chance to find out more about the charity, and to hear first-hand from some of our scientific and clinical researchers about theirprojects– research that you have helped us to fund. They are a great chance for the team here at ERUK to meet more of our supporters in person too.

Newcastle ERUK has funded four research projects at Newcastle University since 2009, so we were delighted at the opportunity to visit the Institute of Neuroscience in March to hear about some of their recent work. Speaking at the event Professor Andrew Trevelyan, Professor Mark Cunningham, Dr Rhys Thomas and Dr Rob Forsyth, described their work funded by Epilepsy Research UK, as well as some of their recent findings and ongoing projects, and the potential impacts on the lives of patients living with epilepsy. We also heard from Andy Trafford, Director of MacDonald Martin Ltd, who described his company’s fundraising partnership with the charity and the connection with epilepsy that has motivated them to get involved. Supporters were then able to look behind the scenes as we received a tour of the laboratories where the epilepsy research is conducted. Everyone was extremely impressed by the expertise and technical abilities on show, and by the high standard of research taking place. We were able to see and hear what electrical signals from the brain during normal activity and during an epileptic seizure look and sound like when they are picked up by a computer!

A huge thank you to all our speakers, to Dr Ann Fitchett for her help in organising the event, to the staff in the laboratory who showed us around, and to our supporters who attended the evening, and without whom this research would not be possible.

Exeter In early September, we visited The Living Systems Institute at The University of Exeter to host an evening together with some of our regional researchers and supporters. Professors John Terry and Adam Zeman put together a fantastic programme for us and we were keen to hear all about the research that has taken place, some of which Epilepsy Research UK has funded.

“Yes, I am very busy but I take this role at ERUK very seriously and I will make the time. As a first step, I will be giving up my role as Head of the Epilepsy Department at UCL to enable me to dedicate more time to the development of the charity.”

Professor John Terry chaired the event, and it was the first opportunity our supporters had to meet ERUK’s new CEO Maxine Smeaton who was delighted to join us and introduced the evening. We heard from Dr Piotr Slowinski whose research seeks to better understand the origin of focal epilepsies using both computational and experimental models.

On a lighter note, I asked Matthew, “What would the young you, think of you now?” His response? “I would probably be upset about the hair loss, but pleased that I was a neurologist as I was always fascinated by how the brain works”. In fact Matthew had never seriously considered being anything other than a doctor.

This was followed by Dr John Baker who described his research into epilepsy in dementia versus memory loss in epilepsy. People with dementia have about a 25% chance of developing epilepsy and John highlighted many challenges involved in delineating symptoms of early stage dementia from those of epilepsy.

transforming lives through research

We look forward to meeting you and really do hope you will be able to join us.

These interesting and informative evenings are open to all who are interested in finding out more about the work of Epilepsy Research UK. Keep an eye on our website for details of future events and let us know if you would like to come along.

“You already have a very busy schedule, so how will you fit this in with the rest of your demanding portfolio?”

I concluded our ‘interview’ with Matthew by asking him what was the best piece of advice he was ever given. It came from his father and would be useful for us all to remember: “without hard work any talent you have will be wasted”.

We have had two events this year, Newcastle and Exeter, and Edinburgh is next on our list to visit in spring 2019. To register your interest email jo@eruk.org.uk or call the office on 020 8747 5024, and we will send you further information when available.

Simon Privett was up next. Simon has epilepsy and he spoke about his experiences, and how he has gone on to help others, both by setting up two Coffee & Chat groups in Devon, and by liaising with Professor Terry and the team with his lived experiences work, and helping to shape research understanding for everyone.

It was an inspirational evening, and certainly very informative! Our guests also had the opportunity to look at the labs in situ around the building on a tour led by Dr Piotr Slowinski and hear more about the actual research and how it takes place.

Finally we heard from Dr Khalid Hamandi who gave us a fascinating overview of brain imaging and how things have developed with new technologies, and how he used funding from ERUK to better understand human epilepsies through imaging.

Our sincere thanks to all of our speakers who gave up their time and to Professors John Terry and Adam Zeman for putting the programme together. Also Silvia Bortolli and everyone at The Living Systems Institute and The University of Exeter who helped organise the evening.

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Sporting events

Fundraisers in action Fundraisers in the community

Running the Brighton Marathon Annabel Dando tells us why she took on the Brighton Marathon in April 2018 for Epilepsy Research UK. “My twin sister has lived with epilepsy for about seven years now. I was so determined to do something amazing for her and other people with epilepsy, so I decided to challenge myself and apply to do the Brighton marathon. I trained almost every day for about 3 months and ran 6 miles each day. Whilst I was doing this training I was in the middle of my second year of university meaning I was simultaneously juggling university assignments and my running routine. This was more mentally and physically challenging than I ever imagined, but I was not going to be defeated.

National Epilepsy Week We were delighted to announce the recipients of our 2018 research grants at our reception at the Royal Society in National Epilepsy Week in May (see back page). Around the country supporters organised and took part in various events to mark the week, from awareness raising activities, supermarket collections and cake sales to sponsored runs and challenges.

On the day of the run, I was very nervous as I had set myself an aim of 4 ½ hours, but with the support of my family and friends, I crossed the finish line after 4 hours 18 minutes and 18 seconds! I was incredibly proud and the support I had received over the months of preparation and on the day was overwhelming. The donations kept coming and in total I raised just over £1,500.

Our thanks go to Annabel and all her family and friends for such fantastic support for our research!

I believe epilepsy is not spoken about enough and a lot of people do not realise the struggles those with epilepsy can go through. So it was important to me to set myself a challenge, I will never forget my experience of running the marathon and I look forward to setting myself a new challenge in the near future! ”

Club Triumph’s Round Britain Reliability Run

BBC R4 Appeal Long term supporters Nick and Rachel Christian presented our Radio 4 Appeal on March 25th and again on 29th.

Here at Epilepsy Research UK we are delighted to have been chosen as the official charity of Club Triumph’s Round Britain Reliability Run 2018, taking place 5 – 7 October.

Rachel’s epilepsy was diagnosed at the age of three and she was put on medication which had severe side effects but did not stop her almost daily seizures. At the age of seven she underwent risky brain surgery.

This is an epic touring event, with over 140 Triumph cars, crewed by two or more drivers, setting off on a 48-hour non-stop drive around Britain, starting out from Knebworth House in Hertfordshire, to John O’Groats, then Land’s End and back to Knebworth – a gruelling 2,000 miles in total!

The impact was immediate as Rachel herself testifies, “When I woke up after the operation, I felt like a new person, once the headache disappeared!” Rachel’s life was transformed. Her school work improved and she became the charming, sociable teenager that she is today. Her candid, engaging and heart-warming account of her experiences told with honesty and openness cannot have failed to have moved those who heard it. As a result we raised a magnificent £8,000 for future research.

Club Triumph have chosen to support ERUK with this great motoring adventure in memory of two prominent club members, Martin Randle and John Snook, and we are honoured to be the beneficiary of all the sponsorship raised by all the crews this year. If you’d like to support any of the teams on this unique challenge, you can do so at www.justgiving.com/ companyteams/ RBRR2018.

Thank you to both Nick and Rachel for their sterling efforts and we all wish Rachel the very best in her studies.

Join Team ERUK and get involved in one of the many events coming up on our sporting calendar in 2019. •

Ultra Challenges 2019

Great North Run 2019

Leeds 10k 2019

and many more

To sign up or to view our full range of events, please see our website or email jo@eruk.org.uk. If you have your own place in any event you can still fundraise for us. Just contact Jo with your details for a fundraising pack and running vest or t-shirt. Your sponsorship really does make a difference to the research that we are able to fund!

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transforming lives through research

transforming lives through research

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Reception at the Royal Society As part of National Epilepsy Week, we announced details of the the 12 new grants we are funding in 2018 at a reception at The Royal Society, London, attended by many of our supporters and researchers. Before introducing the researchers, Professor Matthew Walker, Chair of ERUK, first thanked the guests and all donors to the charity for their hard work and all they have done to make this an exceptional year for research funding.

Each of the new grant recipients gave a short talk about their work and what funding from Epilepsy Research UK means for them. After the presentations supporters had the opportunity to speak with the researchers about their work, and to share some of their motivations for supporting ERUK. All present drew huge inspiration from such an informative and uplifting evening and we would like to thank all our guests for their contribution to such an enjoyable event.

Christmas card shop volunteers needed We’re looking for volunteers to help in charity Christmas card shops later in the year in central London, Stamford, Altrincham, Hale, Wilmslow, York and Durham. If you would like to help and can spare a morning or afternoon most weeks from mid-October through to mid-December, please contact Shona for further information on 020 8747 5024 or email shona@eruk.org.uk.

EVAN STONE QC 1928-2018 We are sad to report the death of Evan Stone, a founder trustee for the Fund for Epilepsy (FFE) in 1992 and supporter of ERUK since the FFE merged with the Epilepsy Research Foundation in 2007. Evan was a distinguished barrister and also a former Chairman of the City and Hackney Health Authority, which included St. Bartholomew’s Hospital. Evan had a strong family connection with epilepsy, and so dedicated a large part of his time to epilepsy charities. With his legal and health background, and supported by his wife, Gisela, who predeceased him in 2015, Evan provided valuable legal advice in establishing the FFE and with his extensive legal and medical network was personally instrumental in raising hundreds of thousands of pounds for epilepsy research, initially at the Institute of Epileptology at King’s College, and latterly in support of ERUK. For example in 1993 he hosted a very successful fundraising reception in the Lord Chancellor’s Rooms in the House of Lords. He last attended the ERUK reception on the 25th anniversary of the foundation of FFE in May 2017, shortly before his terminal illness. All who knew Evan will miss his charming friendship and gifted powers of persuasion on behalf of people with epilepsy. Ted Reynolds

“Research into epilepsy is the only way that things will get better for those who live with it.” Mark Blackshaw

The selection process for our next research grant awards has just begun with our 2018/19 grant round opening for preliminary applications. We would like to thank all the supporters who contributed to 2018’s grant awards by making a regular monthly gift. If you would like to support 2019’s awards, please do get in touch or visit our website: www.epilepsyresearch.org.uk.

Thank you.

PO Box 3004, London W4 4XT T: 020 8747 5024 E: info@eruk.org.uk W: www.epilepsyresearch.org.uk • Registered charity number: 1100394 Designed and printed by Eclipse Creative Ltd: 01252 517341 www.eclipse-creative.co.uk

Profile for Epilepsy Research UK

Focus Newsletter - Autumn 2018  

Focus Newsletter - Autumn 2018