Focus NEWSLETTER SUMMER 2020

INVESTING IN HELP FOR TODAY & HOPE FOR TOMORROW The ERUK Lifeline

Once a year, lifelines in the form of ERUK grants are issued, ensuring research into the causes, treatments and diagnosis of epilepsy is sustained in the UK. Whoever catches a lifeline will benefit hugely and could change the entire focus of research into epilepsy.

It is an uncomfortable truth that most research jobs last only a few years. Upon finishing a PhD, the typical career path involves undertaking a series of three-year postdoctoral positions. Projects, careers and family life depends on getting the next grant. For younger researchers in particular, there are relatively few funding opportunities, potentially preventing them from pursuing a career in epilepsy research.

gracious when our colleagues make it through and our own applications crash.

credit for their discoveries!) while ERUK covers the salary and project costs.

But most importantly – once we’ve made it through the preliminary selection and submitted our full applications, we all know to a heartbeat when the SAC will have met again, and when the decision will have been made about which grants will be funded. A researcher’s salary often evaporates every three years, so being awarded an ERUK grant provides a real lifeline.

So, every year when the SAC meets and ranks the 20-30 shortlisted applications to select the most promising ones to recommend for funding, those 20-30 research groups (not just the main applicants) but their students, postdocs, colleagues and departmental heads – will be holding their breath, and checking their emails every 15 seconds.

This is why ERUK grants are so vital. We researchers all know when the Scientific Advisory Committee (SAC) meets to determine whether grants will be shortlisted (November). After being invited to submit applications in January we all check in with each other to celebrate being shortlisted or commiserate if not. We try to be

Meanwhile, a few very successful early career researchers will be awarded fellowships – the ERUK Emerging Leader Fellowship. These fellowships can transform a career and greatly contribute to the care of people living with epilepsy. Fellowships are also attractive to universities as they get to host the Fellow’s research (and share

Receiving a grant from ERUK can significantly enhance a researcher’s career. More importantly, it drives forward research to increase our knowledge of epilepsy and affect real change for those with the condition. Professor Stephanie Schorge Trustee, Epilepsy Research UK Professor of Translational Neuroscience UCL School of Pharmacy

INSIDE THIS ISSUE: 2

The impact of Covid-19 on research

4

ERUK invest over £1 .3 million in epilepsy research

12

Introducing virtual fundraising with ERUK

14

A thank you to our fundraising heroes

LIFE CHANGING LIFE SAVING RESEARCH epilepsyresearch.org.uk

2

SEIZURES HAVEN’T STOPPED SO NEITHER WILL WE Life has changed considerably since our last edition of Focus. The coronavirus pandemic is having a profound effect on us all. Many of our researchers and trustees are clinicians and have been recalled to frontline NHS duties. We thank them, and the whole NHS, for their work in helping to fight Covid-19. This is a worrying time for everyone, but I want to personally reassure you that our commitment to research into epilepsy continues. In March, the ERUK team packed up its desks, hugged each other and left the building. Despite our preparations, I was worried there would be disruptions in moving to a new way of working. I was wrong. We haven’t paused since, even for a second.

We’ve awarded over £1.3 million funding to ten exciting new projects (page 4). We’ve launched initiatives like our new virtual fundraising events to help families, friends and supporters come together and stay connected. We’ve worked with researchers to develop a blog that brings research to life in an accessible way. We’ve welcomed new colleagues, including our first ever Director of Research & Innovation, Dr James Pickett, who on page 3 provides an update on the impact of Covid-19 on research. And we’ve said a very fond farewell to a retiring colleague via a Zoom party. We face considerable challenges ahead. With an anticipated drop of 50% in income for charities, we’re seeing mass participation events cancelled and the usual summer community fundraising efforts postponed due to social distancing. But the ERUK team is agile and responsive, and we will do whatever we can to ensure research into epilepsy continues. I am enormously proud of the team for their resilience, can-do attitude and steadfast commitment to ensuring our work not only continues – but thrives!

The whole world has never been more aware of the vital role science plays in advancing public health. Of course, we as a community have always known this. So a very sincere thank you to you all for your continued commitment and support. Seizures haven’t stopped - and our promise to you is that neither will we. Wishing you good health. Maxine Smeaton Chief Executive

3

IMPACT OF COVID-19 ON RESEARCH ERUK leads the funding and promotion of epilepsy research, driving forward important scientific and clinical research projects. I see great opportunity for developing this research and creating new ways to bring life-improving treatments to people living with the condition. In my new role as Director of Research & Innovation, I am looking forward to getting started and helping to create some of these opportunities. I wasn’t however expecting to do so in the midst of a global pandemic. Like many medical research charities, Covid-19 has interrupted our plans. Universities and laboratories have had to close, resulting in the suspension of experiments and clinical studies. Thankfully this doesn’t mean the end of scientific progress. Many of our researchers are able to continue to discover new knowledge about epilepsy through analysing data, designing future experiments and writing research papers to share their knowledge.

We are members of the Association of Medical Research Charities – the hallmark of quality research funding. Membership allows us to understand how the coronavirus is affecting all medical research charities, and through the AMRC we can talk to government about what is needed to ensure research isn’t derailed. Working together with other charities will be one of the ways that research emerges from this pandemic as strong as it can be.

We stand by our research community at this unprecedented time and are doing what we can to support them.

It’s likely additional funding will be needed to ensure we realise the potential of the projects we are already supporting. These are challenging times. And to be blunt, we need your support more than ever. But, our mission remains the same. Regardless of the challenges that lie ahead we will work with our researchers to ensure our life changing, life saving research continues.

Covid-19 has not just affected research projects, but has also impacted on the careers of researchers – especially our Fellows and PhD students. To mitigate some of the challenges they face we have rapidly developed a range of measures to help. This includes extending deadlines and providing additional funding to support salaries and research costs. Considering the financial uncertainty faced by the whole charity sector, this represents a significant commitment from our Board of Trustees.

Please stay safe and I look forward to us meeting soon. Dr James Pickett Director of Research & Innovation

4

OVER £1.3 MILLION INVESTED IN LIFE CHANGING LIFE SAVING RESEARCH We are delighted to announce we have awarded over £1.3 million across ten projects in this year’s grant round – our largest research investment to date.

3

Due to this investment, new studies will be taking place in 16 institutions and hospitals across the UK, involving over 40 researchers, including collaborators in Belgium, Denmark and Australia. That means we are currently funding 41 projects nationally. Alongside funding studies to advance our understanding of epilepsy we also use our grants to attract and retain the very best researchers to the field of epilepsy research. This commitment to supporting the careers of researchers through our Fellowship Awards is helping to strengthen epilepsy research capacity in the UK.

2

2

2

2 2

22

SUMMARY OF 2020 RESEARCH AWARDS EMERGING LEADER FELLOWSHIP AWARD - £298,775 Dr Wessel Woldman, University of Birmingham ASSESSING WHEN AND WHY EPILEPSY TREATMENT FAILS TO WORK

BACKGROUND Understanding the prognosis of epilepsy is challenging. Clinicians can now record brain data using powerful techniques, and novel treatment options are continually being proposed. This data is complex, which makes mathematical models an ideal tool for developing a new understanding as to whether seizures can be prevented with drugs or other therapies.

THE STUDY Dr Woldman will develop mathematical models to further our understanding of how treatment options – medication or surgery – influence brain activity. Using these models, the team will interrogate data recordings from people with juvenile absence epilepsy and other genetic generalised epilepsies who are taking new antiepileptic drugs, and recordings from people with focal epilepsy who have undergone surgery. This will allow Dr Woldman and world-leading collaborators at

St Vincent’s Hospital, Melbourne to reveal features currently hidden in the data, which could indicate why certain people continue having seizures whilst others become seizure-free. SIGNIFICANCE This research will contribute to the development of robust prognostic markers that could be used to help inform patient management within the next five to ten years and could significantly improve selfmanagement of seizures.

5

£154,537

£128,578

Project Grant

Project Grant

Professor Michael Cousin University of Edinburgh

Dr Sophie Bennett University College London Great Ormond Street Institute of Child Health

UNDERSTANDING AND TREATING DNM1 EPILEPSY

DISCOVERING OUTCOMES FROM TREATING CHILDREN’S MENTAL HEALTH

BACKGROUND Epileptic encephalopathies (EE) are a group of disorders where epileptic activity overrides the normal function of the brain. This is often caused by genetic mutations and can result in drug-resistant epilepsy. Mutations in the gene DNM1, which is involved in a brain communication process called endocytosis, cause a specific type of EE.

BACKGROUND Mental health difficulties and lower educational attainment are more common in children with epilepsy than in those without a chronic condition. Dr Bennett and colleagues are currently investigating whether mental health treatments for children with epilepsy can be improved.

THE STUDY Professor Cousin will investigate altered endocytosis in EE, and whether it could be used as a new therapeutic route for the condition. Using an animal model of DNM1 epilepsy, the research team will determine how DNM1 dysfunction affects the ability of individual brain cells to operate and communicate with each other. Ultimately, they want to determine how this dysfunction manifests itself as seizure activity and indicate whether a new drug could be used as an effective treatment. SIGNIFICANCE Many EEs are drug resistant so new molecules and processes to target them need to be identified. If this research demonstrates that endocytosis plays a role in seizure activity, future drug trials could target this process in people with different epilepsies.

THE STUDY Combining attainment levels of pupils in England with hospital admissions data, the team will investigate whether treating mental health problems in children affects outcomes identified by families, including how well children perform at school, the impact on their parents’ own mental health and how it affects epilepsy symptoms. SIGNIFICANCE This research will provide information about the importance of integrating mental health treatment for children with epilepsy with their education and epilepsy treatment, and help to improve support for them and their families.

6

£165,055

£188,666

Project Grant

Project Grant

Dr Khalid Hamandi Cardiff University

Professor Matthew Walker University College London Institute of Neurology

SEEING INSIDE: NON-INVASIVE BRAIN MAPPING OF EPILEPTIC ACTIVITY (SINIMA)

INVESTIGATING BREATH TESTING AND SWEAT ANALYSIS TO HELP DIAGNOSIS

BACKGROUND Identifying where a seizure originates can lead to lifechanging surgery when antiepileptic drugs have failed. Advances in MRI brain scanning have revolutionised the field, however current brain scans are still not sensitive enough to pick up abnormalities in some patients.

BACKGROUND Determining whether someone has had an epileptic seizure, or another event, can be challenging and result in the wrong diagnosis. A ‘seizure test’ used after the event would therefore be very helpful.

Dr Hamandi and his team at Cardiff University have been awarded a grant to investigate two advanced brain scanning methods; magnetoencephalography (MEG) and functional MRI (fMRI) to better identify areas that cause seizures. THE STUDY The researchers will use scans and new analysis methods to record brain activity in 30 patients due to undergo a special type of electroencephalogram (SEEG) where electrodes are surgically placed into the brain, pinpointing where seizures arise. The team will compare results from the fMRI and MEG scans – which are considered non-invasive – with the results from the invasive SEEG. SIGNIFICANCE This study will develop new and safer non-invasive methods to locate epileptic brain areas, in order to offer epilepsy surgery to more patients and with better predicted outcomes. In the future, combined fMRI and MEG may become components in the work up of patients for epilepsy surgery.

Researchers have used small molecules released from the body in breath and sweat to detect cancers and other diseases; this study will determine whether a similar method can be used to detect whether someone has had an epileptic seizure. THE STUDY Breath and sweat samples will be collected from people who have been admitted to hospital after a potential seizure and analysed by the team. The researchers then hope to identify a pattern of small molecules that can distinguish seizures from other events, and perhaps determine the severity of the seizure. SIGNIFICANCE Although this analysis of sweat and breath will initially involve complex machinery, this could later be converted into a simpler ‘breathalyser test’ to help prevent misdiagnosis. This test could then be used by ambulance crew and emergency staff to determine what sort of event someone has had and may help determine the nature of unwitnessed seizures.

7

ÂŁ28,804

ÂŁ25,966

Pilot Study

Pilot Study

Dr Simon Keller University of Liverpool

Professor Richard Baines University of Manchester

SCANNING TECHNIQUE TO IDENTIFY ABNORMAL BRAIN AREAS

CHARACTERISATION OF A NEW ANTIEPILEPTIC DRUG

BACKGROUND For most people with epilepsy, an MRI scan can tell which part of the brain is abnormal and causing the seizures. However sometimes this is not possible, even in severe cases. The team want to test a new scanning technique that may be able to automatically identify abnormal brain areas causing seizures.

BACKGROUND Current antiepileptic drugs are only effective at controlling seizures for two-thirds of people with epilepsy. Professor Baines and colleagues have identified a protein called Pumilio, which is part of a brain mechanism that acts to prevent seizures in healthy individuals.

THE STUDY This project will test the ability of magnetic resonance elastography (MRE) to detect abnormal brain regions in people with severe epilepsy. Ten patients with severe epilepsy who continue to experience seizures will be recruited. These patients will already have an abnormal part of the brain previously diagnosed by an earlier MRI scan.

THE STUDY Studies show reduced Pumilio expression is associated with seizures in a range of animal models. Reduced Pumilio has also been observed in human temporal lobe epilepsy. Professor Baines and colleagues are developing a new antiepileptic drug that works by increasing the activity of Pumilio, which has proved successful in animal models of epilepsy.

The researchers will then see whether MRE can detect the abnormal brain region. If it does so, they will scan many more epilepsy patients to determine whether the technique can provide patients and doctors with a clearer prognosis for epilepsy diagnoses.

This pilot study will focus on understanding how this drug achieves its antiepileptic effect. Understanding this mechanism may lead to new discoveries to underpin the development of new classes of antiepileptic drugs.

SIGNIFICANCE This project will demonstrate whether MRE has potential as a clinical investigation tool in people with epilepsy. If successful, MRE facilities could be integrated into many epilepsy evaluation centres.

SIGNIFICANCE A better understanding of Pumilio and of the new drug being developed may provide this step-change in treating such epilepsies.

8

£30,000 Pilot Study

Dr Laura Mantoan Ritter King’s College London

DETERMINING CAUSES AND IMPROVING DIAGNOSTICS OF EPILEPSY WITH FOCAL CORTICAL DYSPLASIA

£20,000

Céline Newman Bursary

People with epilepsy can benefit from research wherever it is carried out and exchanging knowledge between epilepsy centres makes research thrive. Our first Céline Newman Bursary will be used to do just that, and will help facilitate skill sharing and collaboration between Newcastle University and AixMarseille University in France.

Professor Andrew Trevelyan Newcastle University and Aix-Marseille University

NEW TOOLS FOR ASSESSING MOUSE MODELS

BACKGROUND Focal cortical dysplasia (FCD) is a malformation of brain development and a common cause of drug-resistant epilepsy that is often caused by mutations in specific pathway genes called mTOR.

BACKGROUND Mouse models are a hugely important experimental tool for understanding human epilepsy. Unfortunately, the standard means of EEG monitoring the epileptic condition of the animals can be invasive.

THE STUDY This study will look at FCD tissue removed during epilepsy surgery and aims to detect mTOR mutations in brain cells. The team will then establish whether the brain cell mutations can be detected in the blood.

THE STUDY Professor Trevelyan and collaborators in Marseille are developing a new methodology involving video and a sensitised floor pad in the mouse cage to monitor seizure frequency and associated behavioural changes. This will enable easier assessment of the animal’s epilepsy and the effects of any treatments. The team will use EEG recordings aligned with machine learning tools to train the new system to distinguish different behavioural states, including any associated with abnormal brain activity.

Using this information, the team will investigate whether patients with FCD and refractory epilepsy will have fewer seizures when treated with a novel drug that targets mTOR. Dr Mantoan Ritter and colleagues will work with a board of patient representatives who will help design the trial. SIGNIFICANCE The study aims to find new causes of epilepsy with FCD, the development of new diagnostic tools and the potential to identify new treatments. Results from this study will pave the way for future clinical research for people with refractory focal epilepsy.

SIGNIFICANCE By allowing easier, non-invasive assessment of epilepsy in mice this new tool provides a more efficient way of measuring seizure severity and the effects of any treatments. There could be substantial gains in terms of animal welfare by reducing the need for invasive EEG monitoring in most animals.

9

£299,987

ERUK & AUTISTICA FELLOWSHIP AWARD Dr Charlotte Tye, King’s College London BRAIN-BASED PREDICTORS OF AUTISM IN INFANTS WITH EPILEPSY BACKGROUND Rates of autism reach up to 40% in children with epilepsy. Having both conditions is associated with poorer quality of life, shortened life expectancy and a higher likelihood of other mental and physical problems. Accumulating evidence outside epilepsy populations suggests that differences in brain and behavioural development very early in life can predict an autism diagnosis.

THE STUDY Dr Tye and team will visit families of infants with epilepsy several times over the first two years of life, to measure behavioural and brain development. They will use cutting-edge technology that enables these tests to be completed in the home, to reduce burden on families. The findings will be directly compared to those from large studies of typically developing babies and babies with older autistic siblings.

SIGNIFICANCE This study will identify differences in brain development that will reveal more about shared characteristics between autism and epilepsy, informing early intervention for infants with epilepsy, at an age when treatment has considerable scope for success.

AUTISM AND EPILEPSY: LAYING OUT THE EVIDENCE Dr James Pickett We will only beat epilepsy through collaboration. Working alongside our charity partners Autistica and Young Epilepsy, we are commissioning a new prevalence study to provide us with the facts and statistics about epilepsy and autism, which often go together. Collecting this data will raise the profile of this complex area, show where research is needed, and where further collaborations can be forged in order to make a real difference to autistic people with epilepsy.

10

FINAL REPORTS At the other end of research funding is the final report, which is submitted by grant holders upon completion of their ERUK grant. As a leading funder of epilepsy research, we seek to ensure that findings are disseminated, including to our supporters, who helped make this research happen. These now completed ERUK projects from the last four years investigated the causes, diagnosis and treatment of epilepsy. Successful findings included the identification of a new cellular target in the brain to block seizures and exciting new research which could lead to the design of more specific treatments with fewer side-effects. In some of the investigations, the results were not as expected. But sharing the research outcomes makes a valuable contribution to our growing scientific and clinical understanding of epilepsy and other neurological conditions.

2016 EMERGING LEADER FELLOWSHIP AWARD USING LIGHT TO BLOCK SEIZURES IN TEMPORAL LOBE EPILEPSY Dr Alfredo Gonzalez-Sulser University of Edinburgh

Antiepileptic drugs and surgery are often ineffective in controlling seizures in patients with temporal lobe epilepsy (TLE). Dr Gonzalez-Sulser was awarded an Emerging Leader Fellowship Award to investigate optogenetics, a technique to selectively control brain cells with light. Cells in a part of the brain called the medial septum were chosen and found to be a viable target as they survive

2016 ENDEAVOUR PROJECT GRANT UNDERSTANDING THE ROLE OF GENE GRIN2A IN EPILEPSY AND BRAIN CELL COMMUNICATION Professor David Wyllie University of Edinburgh This project examined a specific gene called GRIN2A and its implications in epilepsy. This gene codes for an important protein involved in the process of brain cell to brain cell communication. Most people have two copies of the GRIN2A gene, but in very rare cases mutations arise, meaning that only one copy is expressed. This can lead to epilepsy.

in conditions where there is brain damage associated with epilepsy. Promisingly, the cells effectively blocked seizures when optogenetically stimulated. “The identification of a new cellular target in the brain to block seizures will hopefully make a difference for people with epilepsy through further research. I am so humbled and honoured to have been chosen as an ERUK Emerging Leader Fellow and wish to express my sincere gratitude to the supporters of ERUK” Dr Gonzalez-Sulser These findings increase our knowledge of brain regions generating seizures. The medial septum has become a potential target for deep brain stimulation, gene therapy or optogenetics, which could be applied in the clinic.

“Being able to conduct fundamental research that has an end goal of informing translational research is key if we are to tackle debilitating disorders such as epilepsy. Such research is not quick, and the benefits may take years to manifest, but it is essential.” Professor Wyllie Professor Wyllie and colleagues used an animal model of epilepsy to investigate how this mutation affects synaptic transmission. Surprisingly they found that the process was not very different. They also found little difference when contrasting seizure activity in brain slices with and without the mutation. Whilst the results were unexpected, they have led to increased knowledge about the role of this protein in brain cell communication.

11

2017 EXPLORE PILOT STUDY WHAT MAKES SOME PARTS OF THE BRAIN SEIZURE-PRONE? Professor Stephanie Schorge University College London School of Pharmacy Many seizures begin in the hippocampus, but it is not known why. The hippocampus has structural differences, which is particularly important for epilepsy as one end is much more likely to generate seizures than the other. This project investigated the reason for this, in order to better understand how to make the ventral hippocampus less likely to trigger seizures.

“Many people with epilepsy experience some unwanted side effects with their treatment. If we can better understand why seizures are likely to start in certain parts of the brain, we might be able to design more specific treatments with fewer unwanted effects” Dr Morris, Co-Investigator The researchers recorded epileptic signals from each end of the hippocampus. When the signals were compared, they did not see a variance in properties that could explain a difference in triggering seizures. This contrasts with findings from other research groups. The team believe this may be because of differences in how tissue is prepared. They will further explore this area as it highlights how subtle changes in methodology can vastly change experimental outcomes.

The true impact of a grant – from publications and follow-on funding to collaborations and changes to policy and practice – can typically only be appreciated after the project has ended. We remain in close contact with our ‘ERUK Alumni’ following their grant to track any subsequent outputs, developments and successes.

2017 EXPLORE PILOT STUDY THE ROLE OF GLIOTRANSMISSION IN ABSENCE EPILEPSY

Dr Mark Wall Dr Richard Ngomba University of Warwick University of Lincoln Absence epilepsy primarily affects children, with absences (loss of attention or awareness) often beginning and ending abruptly. In at least 40% of absence epilepsy patients, medication can stop being effective. Dr Wall and his team studied glial brain cells to find out if a loss of glial cell function is responsible for absence seizures. The team investigated a potential new

target for treatments: chemical messengers known as ‘transmitters’ released by glial cells. Glial cells provide support for nerve cells but can also send signals themselves, by releasing several specific molecules. “This grant has allowed us to combine expertise in biosensor measurements and electrophysiology together with expertise in epilepsy to search for new therapeutic targets to treat absence epilepsy.” Dr Wall The team developed a preparation that allowed them to measure the release of these specific molecules when there is a form of neural activity similar to what occurs in absence epilepsy. They found that one specific molecule called adenosine is released to control absence activity. Although the source of adenosine is not currently clear, the researchers demonstrated that its release can be induced by activating glial cells, and this may be a useful therapeutic target to suppress absence seizures.

12

INTRODUCING VIRTUAL FUNDRAISING The significant impact of epilepsy is matched only by the amazing commitment of you as valued supporters. Thanks to you we’ve been able to fund research to help move us towards potential new diagnostics and treatments. We hope, with your continued support, we can build on this knowledge and achieve our vision of a life free from epilepsy. As the coronavirus pandemic reduces the options for fundraising activities we’ve launched a range of new virtual fundraising opportunities you can do from the safety of your home. We hope our virtual fundraising ideas inspire you to continue to support our vital work.

ERUK VIRTUAL EVENTS

Virtual Quizzing

With countless online quizzing options, there’s never been a better time to test your knowledge with friends.

Running Club

From 5K to the full marathon, make the most of your daily exercise allocation and join the ERUK Virtual Running Club!

Online Gaming

Create your next online gaming challenge, stream it and get family and friends to support you.

Whether you prefer your fundraising to be physically challenging or slightly more sedate, there’s a way to do it virtually. Perhaps you want to climb the equivalent of Ben Nevis using your stairs, or hold an inter-family quiz? Whatever your challenge, why not get in touch and we can talk about how we can support you. Contact Jo Finnerty or Mehreen Syed Call 020 3096 7887 Email jo.finnerty@eruk.org.uk or mehreen.syed@eruk.org.uk

ERUK WINNERS GALLERY Have you had a family bake-off contest with ‘interesting’ results? Or maybe you’ve turned your sitting room into a toddler gym? And what about Dad, has he learned to dance the macarena yet? We’re celebrating the efforts of our fundraisers with our Virtual Hall of Fame, the Winners Gallery. Please send us your photos or Tweet us with the hashtag #VirtualTeamERUK for your place in the gallery – you’ll even receive your own ERUK Winners Certificate!

13

CONNECT ONLINE, CHOOSE YOUR FUNDRAISER AND CONTINUE SUPPORTING VITAL RESEARCH INTO EPILEPSY Anything can be a fundraiser - just use your imagination, let us know your plans and we’ll be there to help

MORE IDEAS...

Create your very own Home Alone Solo Challenge.

Get your friends together and organise an online poker night!

Set up your own indoor cricket tournament (soft balls highly recommended).

INTRODUCING MEHREEN We are delighted to welcome Mehreen Syed as our new Head of Development & Events. Mehreen has a wealth of experience leading teams to raise money through a mix of sports, community and special events. She joins us from The Children’s Trust but has also worked as a fundraiser for King’s College London, Guy’s and St Thomas’ NHS Trust and Royal Mencap Society. Mehreen tells us, her proudest fundraising achievement was raising over £1.1m for the Clinical Research Facility at Evelina London Children’s Hospital in collaboration with the London Fire Brigade, through the award-winning Evelina London Zip event.

I am thrilled to be joining ERUK and know that as a team we are well equipped to face the challenges ahead that will impact all UK charities. I look forward to meeting and working with our supporters to raise vital funds for research that will be transformational for people living with epilepsy. Mehreen

14

FUNDRAISERS IN ACTION Life before lockdown saw #TeamERUK taking on sporting events and challenges, with groups all over the UK pulling together to support research into epilepsy. Thank you to everyone who has donated, run, climbed and cycled for your continued commitment to our cause. Here are some highlights!

3 2

1

7 4

6

5

8 9

12

13

11

10

14

1. Claire and Marion - Winter Walk 2. Simon and Paul - Winter Walk 3. Aimie - Skydive 4. Caitlin and Sophie - Great North Run 5. Caitlin- Kew Half Marathon 6. ERUK Trustee Mary and her son Hamish - Costa Rica Bike Ride 7. ERUK Cheer Squad - Victoria Park Half Marathon 8. Matt - Sydney 10K 9. Prof Rob Duncombe - Costa Rica Coastal Challenge 10. Gemma - Clarendon Marathon 11. Claire and Ellen - Great South Run 12. Susan - Thames Bridge Trek 13. Felicity and Tessa - Chile to Peru bike ride 14. Purple Day - Despite being almost entirely virtual, #PurpleDay 2020 was a hugely successful and inspiring day! The epilepsy community raised their voices as one and ERUK was supported by incredible fundraisers all over the country.

15

The 2.6 Challenge

15 16

17

18

19

20

21

22

23

26

27

24

25

28

15. Liam - Thames Half Marathon 16. Adam - Birmingham Half Marathon 17. Nigel - Stafford Half Marathon 18. Sherry - Victoria Park Half Marathon 19. Chris - Virtual Half Marathon 20. Andrew - Robin Hood Half Marathon 21. John - Oxford Half Marathon 22. Lucy - Cardiff 10K 23. Luisa - Bournemouth 10K 24. Louise – USA Beach Run 25. Harry - Beachy Head Marathon 26. Dennis -Victoria Park Half Marathon. 27. James - Toronto Marathon 28. Techniques Hair & Beauty - Leanne’s Marathon Fundraiser The 2.6 Challenge - #TeamERUK were out in full force for The 2.6 Challenge. Virtual marathons, step-up challenges, cake sales, Garden Olympics, hop-a-thons, live streamed discussions and even a Tortoise Grand Prix – you name it, our supporters did it!

PROFESSOR HELEN CROSS ELECTED PRESIDENT OF THE GLOBAL INSTITUTION ILAE

NO COST FUNDRAISING DURING LOCKDOWN Raise funds for ERUK while you shop or sell online Have you had to free up some space at home during lockdown? You can now #DeclutterandDonate your unwanted books, games and DVDs to help fund our vital research. Visit Ziff it.com to enter the goods you would like to sell, then simply select ‘Donate’ at checkout and search for ‘Epilepsy Research UK’.

We are delighted to share the news that our President – Professor Helen Cross – has been elected as President of the International League Against Epilepsy (ILAE), the preeminent association of healthcare professionals and scientists working in epilepsy across the globe. Speaking after the announcement Maxine Smeaton, ERUK Chief Executive said:

Helen’s commitment to the epilepsy community is nothing short of inspirational. She is revered by her fellow clinicians, researchers and patients, and of course, for charities like us, she goes the extra mile to support our work. Helen will bring so many qualities to the leadership of the ILAE globally. We are absolutely thrilled for her.

CAN Mezzanine 7-14 Great Dover Street London SE1 4YR

Are you or your family celebrating a special occasion during isolation? Whether it’s remembering a loved one or wanting to mark National Epilepsy Week, setting up a Facebook fundraiser takes only a couple of minutes and is a great way to include your friends and family in a cause you care about. Visit our Facebook page to set up your fundraiser.

If you want to sell or dispose of an old car and give the proceeds to ERUK, Giveacar arrange free collection, then either sell your car at auction or scrap it with the proceeds going to charity. To find out more, visit giveacar.co.uk or call 020 7736 4242 quoting Epilepsy Research UK.

Whilst you’re forced to do all your shopping online, one small act could make a big difference. With Amazon Smile you can make all your usual purchases and Amazon will donate 0.5% of the spend to your chosen charity at no extra cost to you. Simply go to smile.amazon.co.uk and select ‘Epilepsy Research UK’ as your charity.

T 020 3096 7887 E info@eruk.org.uk epilepsyresearch.org.uk

You can also use these websites to give while you shop – donations will automatically be generated for ERUK at no extra cost! - Every click - Give as you live - EasyFundraising

in Registered charity (1100394)