Focus newsletter - Autumn 2021 by Epilepsy Research Institute

Focus NEWSLETTER AUTUMN 2021

INSPIRING THE NEXT GENERATION OF RESEARCHERS Professor Cathy Abbott, joint lead researcher at our new Doctoral Training Centre at the University of Edinburgh, explains how these ‘PhD hubs’ will support the development of future leaders in epilepsy research. In 2020, Epilepsy Research UK set a challenge to “go further” with the research it funds - to create an environment in which the research could flourish, and to nurture and expand talent in the field of epilepsy. One way in which the charity proposed to build capacity was by setting up Doctoral Training Centres (DTCs) dedicated to epilepsy research. While many of us will be familiar with the way undergraduate students are funded in the UK, fewer know how PhD students fund their studies and living costs (stipends). They largely obtain studentships via recruitment to DTCs, funded by government or charities. Importantly, PhD students are the lifeblood of medical research labs, and although they are trainees, they play a vital role in moving research forward. There are a number of DTCs in the UK with a neuroscience theme, but

INSIDE THIS ISSUE: 4

Epilepsy Research UK Doctoral Training Centres

these will be the first with an exclusive focus on epilepsy. Before I come to the specifics of the DTCs and the training they’ll provide, I must first pay tribute to Epilepsy Research UK and the innovative way the charity set up this funding scheme. Any university applying for a DTC had to provide matched funding. So, if a university was applying for three studentships (made up of stipend, fees and running costs), it had to also source additional funding from elsewhere for three more, resulting in six students researching epilepsy for the price of three. As a way of building capacity in epilepsy research, this is little short of genius. The overall aim of the DTCs is to carry out research into the causes and treatment of epilepsy, but the other, equally important goal is to inspire a new generation of epilepsy researchers. There are two new centres in Newcastle and Edinburgh, each of which will recruit

Epilepsy Priority Setting Partnership

and train at least six PhD students. Doing a PhD can be quite an isolated experience as an individual project becomes more and more specialised, but through the DTCs we will build cohorts with shared training that spans the whole field of epilepsy research. This will also allow students to place their own research in the wider context of everything, from genetic diagnosis to predicting how seizures develop, from technology to drug development. The two DTCs are even going to work together to share training, building an even bigger and better cohort effect. Crucially, the experience of people with epilepsy will be embedded throughout this training - their input is vital to ensuring that research is appropriately focused, and who better to inspire the next generation of researchers? We can’t wait to get started. Professor Cathy Abbott University of Edinburgh

Meet Yvonne - “Epilepsy is like having a stalker.”

#BrainathlonHalf LIFE CHANGING LIFE SAVING RESEARCH epilepsyresearch.org.uk

BUILDING RESEARCH CAPACITY TO ACCELERATE PROGRESS As we navigate through and beyond the COVID-19 crisis, our aim is for epilepsy research to come out stronger than it’s ever been. To do that we need to change the landscape of epilepsy research. That’s why our approach to halt the devastating interruption of epilepsy is embedded in our capacity building programme. We are adopting a systematic, focused and evidenceled approach that will build epilepsy research capacity in the UK. Capacity building is about creating an environment for research to thrive, and by doing this, we won’t just have an impact on the researchers we fund, but on researchers across the world. By strengthening capacities and skills, by fostering effective collaborations and by involving people affected by epilepsy, we will capacity build epilepsy research to accelerate progress. At the core of our capacity building efforts is our programme to attract the best and brightest minds to epilepsy research. Through our Fellowship Awards we attract the best clinicians and develop their scientific expertise. Through our Doctoral Training Centres (DTCs) we’re supporting the next wave of researchers, who in turn will become tomorrow’s future leaders. Alongside attracting the best and brightest minds, we will build capacity by fostering collaborations to maximise the impact of our collective efforts. Now that restrictions have eased, our workshops and seminars will once again provide opportunities

for researchers to exchange ideas and build new collaborations. We are also collaborating with the wider epilepsy community on a Priority Setting Partnership with the James Lind Alliance, to develop priority areas for researchers to focus on. This process will provide a valuable opportunity for patients and clinicians to shape future health research. Underpinning our capacity building programme is our SHAPE NETWORK, which places people affected by epilepsy quite rightly at the heart of research. It will also become an important asset in our efforts to beat epilepsy by providing a new national Patient and Public Involvement (PPI) service to all researchers undertaking research into epilepsy.

Our capacity building programme has so much potential to transform epilepsy research. Thank you for your support in making this happen. Together, we can stop epilepsy interrupting lives.

Maxine Smeaton CEO, Epilepsy Research UK

WHAT’S AT STAKE? LIVES

The lives of 600,000 who are currently living with epilepsy in the UK.

BILLIONS

The £1.5 billion epilepsy costs the NHS every year.

BREAKTHROUGHS SO FAR Treatments and surgical techniques for specific types of epilepsy Developments in anti-epileptic drugs – there are now around 28 drugs commonly used. Surgical techniques have been successful in reducing seizure frequency in suitable patients. Devices that can modulate brain activity to reduce seizure frequency Including vagus nerve stimulation (VNS), which was identified following decades of extensive research. Advanced neuroimaging to identify brain abnormalities Developments in brain imaging mean that we can not only pinpoint the source of seizures, but predict seizure freedom and cognitive outcomes. Around 1,000 protein-coding genes have been linked to epilepsy Identifying the specific genetic causes of epilepsy can help ensure personalised treatments with fewer side effects.

YET TO BREAK THROUGH Underlying causes For 65% of people there is still no known cause for their epilepsy. Drug-resistant epilepsies 30% of people with epilepsy still have uncontrolled seizures that do not respond to medication. Underlying mechanisms of SUDEP Tragically, there are 21 epilepsy-related deaths every week, of which SUDEP (Sudden Unexpected Death in Epilepsy) accounts for half.

WE NEED TO TAKE URGENT ACTION NOW Each and every breakthrough demonstrates the huge potential of research to achieve our vision of a life free from epilepsy. There have been a number of important developments in epilepsy therapies that have improved the quality and length of life for many. This is heartening, but we still have a way to go to prevent epilepsy from interrupting, disrupting and, tragically, ending lives.

EPILEPSY RESEARCH UK DOCTORAL TRAINING CENTRES Launched last year, our Doctoral Training Centre (DTC) Grant Scheme will support PhD students to become future leaders in epilepsy research. Newcastle University and University of Edinburgh are the first ever DTCs focused exclusively on epilepsy. PILEPSY RESEARCH UK NEWCASTLE UNIVERSITY DTC Professor Andrew Trevelyan & Dr Rhys Thomas

PILEPSY RESEARCH UK UNIVERSITY OF EDINBURGH DTC Professor Cathy Abbott & Professor Richard Chin

£250,000 with matched funding from Newcastle University

£250,000 with matched funding from University of Edinburgh

MEETING THE CHALLENGE OF EPILEPSY THROUGH COMPUTATIONAL AND TECHNOLOGICAL SOLUTIONS

IMPROVING OUTCOMES FOR CHILDHOOD ONSET EPILEPSIES: FROM MECHANISMS TO TREATMENT

Rapid advances in computing and technology offer huge potential to epilepsy research, allowing analysis of the complex origins of seizures and offering novel solutions to monitor and treat epilepsy. The team at Newcastle University are experts in molecular biology, computer programming and engineering. The PhD students will work on cutting-edge research projects focused on three areas of epilepsy research: how seizures happen; how to predict when seizures may occur; and how to prevent seizures.

Epilepsy has significant consequences to a child’s quality of life, affecting them into adulthood, even if seizures are well-controlled. Around 30% of childhood-onset epilepsies (COE) are unresponsive to current treatments and the same percentage of children will continue to have seizures into adulthood.

The DTC will also place strong emphasis on career development and mentorship - creating a highly supportive work environment that will nurture future leaders in epilepsy research, enrich research outcomes and ultimately, improve the lives of the epilepsy community.

The cause of epilepsy is unknown in most children, however recent advances in gene sequencing have revealed a considerable number of cases result from an abnormality in a single gene. This provides an opportunity for researchers since it allows the study of causes and treatment of COE in a simplified experimental system. This DTC will bring together experts in basic science and clinical skills to lead PhD research projects to improve understanding of how seizures occur and improve methods of diagnosis.

EMERGING LEADER FELLOWSHIP AWARDS Our fellowships awards allow us to attract the best early career researchers, develop their scientific expertise and place them at the heart of epilepsy research. Our commitment to supporting the careers of researchers through these awards is helping to strengthen epilepsy research capacity in the UK. MERGING LEADER FELLOWSHIP AWARD

Dr Gareth Morris

£299,141 University College London Department of Neuroscience, Physiology and Pharmacology

miRsense – USING MICRORNA BIOSIGNATURES AS SENSORS FOR PRECISION GENE THERAPY Sadly for around 75% of people with temporal lobe epilepsy, their seizures remain largely uncontrolled. Even when medication does control seizures, people can experience severe side effects. Dr Morris will investigate which types of brain cell are active in seizures, and how the molecules inside these cells change in epilepsy. Using this knowledge he will design a gene therapy that is only switched on when these molecules are present during seizures. The rest of the time it will be switched off and do nothing to the brain. This new technique could hugely refine how we treat temporal lobe epilepsy and other drug-resistant epilepsies. It could represent a ‘one-off’ treatment, and may mean that people with epilepsy no longer require medications to control their seizures.

RUK & YOUNG EPILEPSY FELLOWSHIP AWARD

Dr Tim Tierney

£293,942 University College London Wellcome Centre for Human Neuroimaging

BEDSIDE BRAIN IMAGING There are over 100,000 young people with epilepsy in the UK and in some cases, neurosurgery is the only treatment option. Surgical planning relies heavily on brain imaging and the younger the person is, the more likely the surgery will be successful. However, younger children often have difficulty remaining still in conventional brain scanners and this movement severely degrades image quality, meaning that essential neurosurgery can be delayed. Dr Tierney’s team have developed a wearable brain scanner that can deliver enhanced quality images, even when a child is not still. Unfortunately, these scanners can only function in specialized and expensive magnetically shielded rooms, which few hospitals have. This study will develop a sensor, known as the radio frequency magnetometer, that can be worn in a normal hospital ward or residential setting while being sensitive to the brain activity produced in epilepsy. A precise and wearable brain scanner would eliminate the need for invasive assessments and ultimately provide enhanced surgical planning at a much younger age for many more children, and reduce both the cost and risk.

EPILEPSY RESEARCH UK FELLOWS NAVIGATOR SERIES 2022 We are delighted to announce a new series of seminars, hosted and chaired by the Epilepsy Research UK Fellows. Each seminar will focus on a different theme and will cover the very latest in epilepsy research developments. To achieve our vision of a life free from epilepsy we need to foster collaborations and facilitate the exchange of knowledge and information. For the last 12 years our International Expert Workshops have acted as a catalyst for collaborative research activity by bringing together hundreds of researchers from around the world. The COVID-19 pandemic has temporarily halted our Workshop programme, but we are committed to continuing to drive forward the development of new therapies and precision treatments through the launch of the Navigator Series.

THE FIRST NAVIGATOR SERIES TO BE ANNOUNCED IS: Epilepsy and Autism Charlotte Tye Kings College London

Refractory Epilepsy Vincent Magloire University College London

Genetic Therapies Gareth Morris University College London

Surgical Techniques Ashan Jayasekera Newcastle University

Paediatric Early Diagnosis Tim Tierney University College London

Big Data Wessel Woldman University of Birmingham

Each Fellow will be mentored by an Epilepsy Research UK Trustee who are leaders in their field. Fellows will be supported to ensure the engagement of experts in their research topic during the day-long seminar of presentations and discussions. Bringing together experts in this way to share information and ideas fosters national and international collaborations and sparks new insights that will help to advance the science of epilepsy. Even after the event the sharing of information continues with the publication of seminar outputs in a journal detailing the research discussed, delegate reviews and recommendations for future research.

RESEARCH FINDINGS – GETTING THE WORD OUT Science is built on earlier knowledge. By sharing research findings we also share learnings and outcomes that will influence other researchers’ work or influence policy and practice. In September the International League Against Epilepsy (ILAE) will host its Annual Scientific Meeting to bring together researchers, doctors, health professionals and scientists working in the field of epilepsy to facilitate this exchange of information. Epilepsy Research UK plays an active part in the conference and runs the Neurobiology of Epilepsy session, where we hear from five short-listed early career researchers who compete for the Céline Newman Basic Science Award. This award is generously sponsored by the Newman Family in memory of their daughter. PhD student Paula Rocktaeschel was the recipient of last year’s Céline Newman Basic Science Award. Based at the Nuffield Department of Clinical Neurosciences at the University of Oxford, Paula won the award with her presentation of glucose-dependence of neural differentiation in a stem cell model of Tuberous Sclerosis Complex.

Paula Rocktaeschel

MEET THE RESEARCHER EPILEPSY RESEARCH UK ON TOUR Join us this November when – pandemic permitting – we will be hitting the road for another series of Meet the Researcher events at three of our funded institutions around the country. Back in March 2020, the pandemic put a halt to our face-to-face meetings and we moved all our events online. After more than a year of virtual events, this is finally your chance to meet the researchers who carry out the vital research our supporters make happen. These local events will feature lab tours and presentations to allow you to take a closer look at the projects we’re funding. This will be followed by a meet and greet at a drinks reception. The Epilepsy Research UK team will also be on hand to guide you through the tour and discuss the work of the charity. After 18 months of distance, we very much hope to reconnect with you and talk to you about the cutting-edge research you’ve enabled us to do.

SAVE THE DATE November 3rd – Newcastle University Join Professor Andrew Trevelyan, Dr Rhys Thomas, Dr Rob Forsyth and Mr Ashan Jayasekera and hear more about their study ‘Investigating epilepsy, from laboratory to clinic: meeting the challenge of epilepsy through computational and technological solutions’ at our newly formed Doctoral Training Centre (DTC).

Edinburgh Nov 4th

Newcastle Nov 3rd

November 4th – University of Edinburgh Join Professor Mike Cousin, Professor Cathy Abbott, Professor Richard Chin, Dr Alfredo Gonzalez-Sulser and Akanksha Jain and hear about their study ‘Improving outcomes for Childhood Onset Epilepsies: from mechanisms to treatment’ at our second DTC.

London Nov 24th

November 24th – University College London Come along to this event and get a ‘three for one’ deal. You’ll be able to tour three laboratories at UCL where our funded research takes place. Join Dr Tim Tierney and Dr Umesh Vivekananda at the Wellcome Centre for Human Neuroimaging, Dr Gabriele Lignani at Queen Square Institute of Neurology and Dr Sophie Bennett and Dr Torsten Baldeweg at the Great Ormond Street Institute of Child Health. Following the tours everyone can attend a panel discussion and Q&A, with Professor Matthew Walker, Professor Helen Cross and Professor Mark Richardson and hosted by Andrew Peaple.

REGISTER YOUR INTEREST Visit our website or scan the QR code to register your interest for our Meet the Researcher events.

SHAPE NETWORK Last year we launched our SHAPE NETWORK as part of our #ALifeInterrupted campaign to provide an opportunity for people affected by epilepsy to get involved in all aspects of epilepsy research.

SHAP

EPILEP SY RESEARCH NETWORK

Since its launch, we’ve been working with a dedicated Steering Group of people with personal experience of epilepsy to develop the strategy. Our strategy is broken down into five key areas.

PRIORITIES:

Build

We are building the UK’s largest ever population of people affected epilepsy who want to be involved in research.

Connect

To inform and enhance research, we are working to connect our research community with this large and diverse network.

Involve

We aim to set the gold standard for involvement in all epilepsy research. We will also leverage our annual grant round to encourage researchers to involve and engage with the network.

Advocate

Through our influencing and lobbying activities we will increase awareness of epilepsy and the potential of epilepsy research to improve lives.

Collaborate

We will work in partnership with organisations and groups to ensure that a wide range of epilepsy experiences is reflected in the network.

“OUR VOICES SHOULD BE INCLUDED IN RESEARCH” Rebecca has been living with drug-resistant focal epilepsy for the past 30 years. In April, Rebecca joined our SHAPE NETWORK Steering Group to help develop the strategy for the network. Here she explains why she wanted to be part of this network and why it is so important to involve those affected by epilepsy in research. “I’m excited to be involved in the SHAPE NETWORK because it offers a great opportunity for people living with epilepsy to have a direct impact on the type and quality of research that is carried out. As someone living with epilepsy, it turns a negative into a positive - taking my years of lived experience into concrete forward motion. Living with epilepsy gives you the insight of walking in the epilepsy shoes every day. So, you know where they are tight, where they rub and how you want to cast them off. You also have the first-hand individual experience of medication side effects. Both these things give you relevant knowledge and coping strategies that can inform and shape research. You’re an expert in your own epilepsy and your voice should be included in research direction and decisions. I hope research can provide those of us living with epilepsy more effective treatments with less side effects. A third of people still live with uncontrolled epilepsy. I hope this can be markedly reduced.” If you would like to join our SHAPE NETWORK please contact our Head of Research, Caoimhe Twohig-Bennett: caoimhe.bennett@eruk.org.uk.

EPILEPSY PRIORITY SETTING PARTNERSHIP Epilepsy Research UK is thrilled to announce the launch of a James Lind Alliance Priority Setting Partnership (JLA PSP) to establish future research priorities for epilepsy. The JLA PSP will bring together clinicians, patient groups and people affected by epilepsy to identify and prioritise questions in particular areas of healthcare that can be answered by research. This process results in a top 10 research questions, with the aim to make sure health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives. The scope of the UK epilepsy PSP is defined as the Health research priorities of people with epilepsy: • Causes: to include prevention, co-morbidities • Diagnosis: to include access to health services • Treatments: to include anti-epileptic drugs, surgery, treatment side effects, co-morbidities (including those as a consequence of treatment), and epilepsy that does not respond to treatment • Clinical management of epilepsy: to include risk of epilepsy related deaths, service access, neurodevelopment, co-morbidities, social and psychological factors, and emerging areas such as epilepsy in older people • Dissemination of research breakthroughs to influence epilepsy care, practice and policy: to include medical education and pathways to improved care

The last JLA PSP was undertaken over 12 years ago by Dr Rhys Thomas, Consultant Neurologist and Neuroscientist, with the Wales Epilepsy Research Network. Dr Thomas will once again lead the steering group. Epilepsy Research UK has committed the funds and resource to undertake the programme with a steering committee including key patient groups, people affected by epilepsy, clinicians and epilepsy charities Epilepsy Action, Young Epilepsy, SUDEP Action and Epilepsy Society.

Maxine Smeaton, Chief Executive of Epilepsy Research UK said “A new study is long overdue, the outcomes for which will provide benefit for all the epilepsy charities and clinical and scientific researchers and will provide evidence of need for funding applications. We know that PSPs can lead to increased funding from NIHR, which is so urgently needed for epilepsy given the shocking inequalities in research funding.”

MEET MATT: “THE SMALL MARGINS YOU FIGHT FOR ARE WHAT MAKE THE DIFFERENCE” Matt is a physiotherapist working with elite professional rugby teams, cyclists, triathletes, runners, and he also supported athletes in the London 2012 Olympic games. He had his first seizure in August 2020, aged 38. Matt spoke to us about how his life has been interrupted since receiving his unexpected diagnosis, and about joining #TeamERUK for this year’s London Marathon. “I was in my bedroom when the first seizure happened in August last year. It was around 6.00am, my son had come in for his usual cuddle and the seizure happened while he was in my arms. My wife was there to see it all. The initial incident was followed by a cluster of seizures and I was taken by ambulance to the hospital for emergency treatment. The results for the CT scan, MRI scan, and EEGs all came back appearing normal. They ruled out a brain tumour or any vascular causes. I had around six or seven months of trying various anti-epileptic medications. Eleven months later there are still many questions to answer. The cause and triggers are still unknown, and I haven’t found a medication that works effectively. I’ve realised I knew relatively little about epilepsy. Like many people, I mostly associated it with photosensitivity. Through my work as a physiotherapist and playing rugby when I was younger, I had encountered the condition before. I’ve known players who had to retire due to epilepsy and I’ve since learned that other people I was at school with have also been diagnosed. Epilepsy is certainly more common than many people realise. Despite all this, I didn’t ever really expect it would arise later in my life. Due to my career, I’m used to staying active and I like to go running with my dog, often in remote places, but this could now create its own issues. I ran the London Marathon in 2017, which I think was the hottest on record. But joining #TeamERUK for the 2021 race feels like a bigger challenge due to my diagnosis - it’s given this race a personal meaning and given me focus. From what I’ve read, there is a growing body of evidence around epilepsy, but there are still huge areas we’re still unsure about, such as identifying the causes. If we don’t know the cause of a condition then it’s a lot harder to prevent it. We need to fill in these gaps. In sport, we’re always pushing for those small margins; what can we learn from last season? How can we do what we’ve done better? In many ways, I think research is like this. When all added together, the small margins you fight for are what make the difference.”

GRAB THE MERCH, WEAR IT PROUDLY, START THE CONVERSATION Epilepsy can affect anyone. Yet, despite 600,000 people in the UK living with the condition, considerable stigma remains around epilepsy and many people just don’t want to talk about it. We need to raise awareness of epilepsy, we need to focus attention on the devastation it causes to help us increase the amount of funding invested in epilepsy research. One simple way you can help to raise awareness is to wear our special edition #ALifeInterrupted t-shirts and tote bags featuring beautiful shots from our campaign film. How wonderful it would be to see these items worn across the UK. And, as well as raising awareness, all profits will go directly towards supporting life changing, life saving research. Purchase our #ALifeInterrupted t-shirts and tote bags from our shop: epilepsyresearch.org.uk/shop

MEET YVONNE: “EPILEPSY IS LIKE HAVING A STALKER” Yvonne experienced absence seizures as a young child, but lived seizure-free from the age of nine until last year. While at home with her family during the first COVID-19 lockdown, she experienced a series of frightening seizures which left her hospitalised. She was later diagnosed with temporal lobe epilepsy. Here, Yvonne shares her epilepsy and Crohn’s journey and discusses the awareness-raising work she has done to combat stigma. “I’ve had one hell of a ride since the age of six when I was first diagnosed with absence seizures. I remember each seizure scared the hell out of me and my family. I grew out of these seizures at the age of nine, as the doctors told my parents I would. Then at the age of 11, I became very sick with Crohn’s disease. Since then, I’ve had 59 surgeries, sepsis three times, a colostomy bag fitted and all of my bum removed. I got married to Liam, the kindest person I’ve ever met, and in-between being very sick with Crohn’s we had two girls. Fast forward to 6 April 2020, the day after my little girl’s birthday, I had a very odd feeling in my brain all day. Later, when we were sat on the sofa, I suddenly heard Liam shouting at me and asking what I was doing. I came around and immediately knew it had been a seizure, I then lost consciousness again and woke up with my husband and paramedics around me. I was admitted to hospital where I was taken good care of. I was sent home the next day and told to keep a diary. I didn’t have a seizure again till July 2020. I remember an intense déjà vu feeling before waking up on the floor with my girls trying to pull me up. My littlest ran upstairs to get my husband and he carried me to the sofa where I experienced multiple seizures. I woke up in A&E and they told me they had counted up to seven seizures, each time with me falling unconscious. I was referred to a specialist, had an MRI and EEG scan, then was diagnosed with temporal lobe epilepsy and put on very strong medication immediately. Epilepsy is very hard to describe and it’s not just seizures; it’s so much more. I feel like I’m not my old self and that I have a different brain. Epilepsy can be like having a stalker and you’re constantly looking over your shoulder for when they’re going to strike. I raise awareness over on my Instagram – @crohns.mummy – for Crohn’s, colitis and my colostomy bag. I’ve now started to do the same for epilepsy. We need more research and more awareness. I want to help others like myself who suffer with this condition. Please reach out if you would like to. I know how hard it is and how peculiar you can feel in your own body. Remember you’re not alone.”

TOTE BAGS £4.99

T-SHIRTS £14.99

A GIFT IN YOUR WILL COULD STOP EPILEPSY INTERRUPTING LIVES Gifts in Wills left to Epilepsy Research UK play a vital role in securing the future of research into epilepsy. They enable us to provide help for today through clinical research to improve treatments and therapies, and they provide hope for tomorrow through lab-based studies to prevent epilepsy. By choosing to leave us a gift in your Will, you will ensure that vital research continues so that together we can stop epilepsy interrupting lives. GIFTS IN WILLS MAKE UP 50% OF OUR ANNUAL INCOME We are currently funding 58 research projects, meaning 29 projects were made possible due to gifts in Wills.

YOUR GIFT IS GUARANTEED TO HAVE A GREATER IMPACT

Over the last five years, our investment in research has leveraged an additional £21.2 million in follow-on funding. That means for every £1 we have invested, a further £5.82 has been secured for epilepsy research.

£1

£5.82

Long-standing supporter Jeanette lives with epilepsy and has pledged a gift in her Will. “I’ve complete confidence my gift will be used wisely, to further the groundbreaking research for which the charity is well known. I’d like future epilepsy researchers to have funding to build on that body of work and to help decades of future patients become seizure-free.” No matter how large or small, every gift left to Epilepsy Research UK helps to achieve our collective vision of a life free from epilepsy. For more information see our website epilepsyresearch.org.uk/gifts-in-wills to download our Gift in Wills guide and if you would like to discuss leaving a gift in your Will to Epilepsy Research UK please contact Jo Finnerty, Head of Donor Relations on 020 3096 7887 or email jo.finnerty@eruk.org.uk.

Earlier this year we launched the first-ever Brainathlon, a virtual event in collaboration with our friends at Brain Research UK and Brain Tumour Research. Following its phenomenal success, which saw our supporters raise over £60,000, we’re back with the second event in the Brainathlon series. Brainathlon Half is a family-friendly relay challenge raising funds for vital neuro research. You can run 7.5 miles, walk 5 miles and climb 0.6 miles (or 1, 250 individual stairs) to complete the total 13.1 miles of the Brainathlon Half. There are so many options - do it on your own, or as part of a relay team, do all three parts on one day or break it up during the week - the choice is yours. Just complete the challenge during Brainathlon Half week, Monday 24 October – Sunday 31 October and raise £100 per person to receive your special Brainathlon Half medal. Whether you’re looking for a challenge to take on all on your own, or thinking of a way to keep the kids occupied during half term, this is the event for you. But don’t take our word for it….hear it from one of our fabulous Brainathlon-ers. Claire said: “I took part in Brainathlon to raise awareness and understanding of neurological conditions such as epilepsy. My brother has lived with epilepsy for almost all of his life, and I know how much it can affect the individual as well as their families. So to have the chance to raise some money for the charities involved was something I could not miss. Hopefully the funds raised will help research and treatment to make the lives of those affected by these conditions better now and in the future.” To register or to find out more, visit epilepsyresearch.org.uk/brainathlonhalf or email mehreen.syed@eruk.org.uk.

31 22

WEEKLY LOTTERY 4

You can be in with the chance of winning up to £25,000 while raising money to fund life changing, life saving research. Sign up to our weekly lottery today for as little as £1! Visit our website to find our more and enter: epilepsyresearch.org.uk/lottery. “I try to contribute personally as well as professionally. I do the ERUK lottery! Research informs understanding, treatment and care of epilepsy.” Dr Simon Keller 2018 Endeavour Project Grant Awardee

#TEAMERUK EVENTS 2022 After many months of distance and isolation we’re thrilled events are well and truly back. We have places in some of the biggest and best challenge events in the UK, including: London Marathon Sunday, 2 October 2022 Great North Run Sunday, 11 September 2022 Brighton Marathon Weekend Sunday, 10 April 2022 Edinburgh Marathon Sunday, 29 May 2022 If you’d like to take part in a scheduled event, or have ideas on a fundraising event of your own, please contact Mehreen at: mehreen.syed@eruk.org.uk.

THANK YOU FOR YOUR CONTINUED SUPPORT Not even a pandemic could stop you, our amazing supporters, from raising funds for research. During a time that has challenged us all, you continue to show how determined and committed you are to supporting epilepsy research. Once again we’ve been blown away by your generosity, inspired by your creativity and moved by your spirit. These photos show how together we will STOP epilepsy interrupting lives.

TOP 10

THINGS TO FIND ON OUR WEBSITE

A LIFE FREE FROM EPILEPSY

#ALIFEINTERRUPTED

Find out more about our priorities for driving and enabling life changing, life saving research.

SHAPE THE FUTURE OF RESEARCH Sign up to our SHAPE NETWORK and help us prioritise, assess and design research into epilepsy.

Our report and campaign highlighting the alarming inequalities in research funding for one of the most prevalent neurological conditions: epilepsy.

HEAR ABOUT THE RESEARCH WE FUND

SHAP

E P I LE P SY RESEARCH

NETWORK

Browse our blogs, watch our webinars to hear directly from the experts about the research we are funding.

WATCH OUR FILMS

WHY WE DO WHAT WE DO

They’re beautiful. Really. And if you’ve ever wanted a way to show your colleagues at work, friends or family what it feels like to have epilepsy, then look no further.

Find key statistics and information and read firsthand experiences from people with epilepsy about how the condition has impacted their lives.

AMRC: THE HALLMARK OF QUALITY RESEARCH Is your money being well spent? AMRC members work by the strictest criteria - peer review, open calls, and rigorous assessment ensuring we invest in only the best research.

WHO TO CONTACT AT #TEAMERUK

LOOKING FOR A GOOD READ? Then here you’ll find the back catalogue of all our recent publications, from newsletters to annual reviews and the #ALifeInterrupted report.

50%

Want to share your story, fundraise, make a donation or get involved in research? Here you’ll find some of the team members you may want to speak to. CAN Mezzanine 7-14 Great Dover Street London SE1 4YR

SUPPORTERS LIKE ME

Scan through the web pages to see the wonderful (and wonderfully weird!) ways people raise money for research into epilepsy. T 020 3096 7887 E info@eruk.org.uk epilepsyresearch.org.uk

Registered charity 1100394