Focus Newsletter - Spring 2022 by Epilepsy Research Institute

Focus NEWSLETTER SPRING 2022

Chief Executive, Maxine Smeaton, explains what our Shape Network has achieved so far for people affected by epilepsy and researchers, and why it’s more important than ever that we work together to drive forward research. Usually in FOCUS we share the groundbreaking work researchers are doing, funded by our supporters, to accelerate progress and stop epilepsy interrupting lives. In this edition, we’re shifting the focus to people affected by epilepsy and the contribution they’re making to research. People living with epilepsy, their carers and families have the experience, knowledge and insight to help power further progress in epilepsy research. By connecting those affected by the condition with researchers and clinicians through our Shape Network, we’re building a powerful community focused on stopping the relentless and often devastating interruptions caused by epilepsy. Since the launch of our Shape Network PPI (Patient and Public Involvement) group two years ago, we’ve recruited the largest ever patient network of ‘research

interested’ people affected by epilepsy. I’m both humbled and encouraged to see so many people join our movement to stop the interruptions epilepsy causes. We’ve worked hard to ensure our network delivers on its promise to transform research. Our network steering group have co-designed a capacity building service to offer meaningful research involvement, from identifying and evidencing priorities, to directly influencing the projects Epilepsy Research UK funds. We’ve delivered an education programme so that members are equipped to understand the research process. For researchers, we’re facilitating and guiding the engagement with people affected by epilepsy, ensuring the process is planned appropriately. The James Lind Alliance UK Epilepsy Priority Setting Partnership (PSP)

we’re leading and funding is bringing together people affected by epilepsy, patient groups, clinicians and our charity partners to prioritise areas of healthcare that can be improved by research. The entire epilepsy community has been invited to contribute and the evidence we gather will be transformational in shaping the epilepsy research agenda. Without doubt, this work will lead to greater strategic collaborations, greater investment and will ultimately springboard innovations in our understanding of epilepsy and the treatments and care of the condition. Thank you for being part of our powerful community. However your life has been affected by epilepsy, by working with us, you are accelerating our efforts to take epilepsy research to the next level. Maxine Smeaton Chief Executive, Epilepsy Research UK

INSIDE THIS ISSUE: 4

The Shape Network in Action

Next steps for the UK Epilepsy PSP

Your involvement in research

Events are back! Ride London, #Brainathlon & more…

LIFE CHANGING LIFE SAVING RESEARCH epilepsyresearch.org.uk

INVOLVING THE EXPERTS BY EXPERIENCE Established in October 2020, the Epilepsy Research UK Shape Network has recruited over 400 people affected by epilepsy – the largest ever network of ‘research interested’ people dedicated to influencing and shaping the future of epilepsy research.

SHAP

E PIL E PSY RESEARCH

NETWORK

People living with epilepsy have valuable experience and insights that can help all stages of the research process, from planning and study design to communicating results. They can influence the direction of research and, crucially, ensure it is focused on what will make the biggest difference to them and their families. We have developed an infrastructure and environment for those affected to help research flourish. The Shape Network is an important part of Epilepsy Research UK’s strategy to support capacity building activities for researchers and is placing people affected by epilepsy at the centre of our work as a charity. Through this network we are ensuring research is focused on the most important outcomes identified by people affected by epilepsy and will provide the evidence needed to secure greater research funding.

FOSTERING AND STRENGTHENING COLLABORATIONS Patient and public involvement in research has become increasingly important and there is now a recognition that it leads to higher quality studies. But it’s not without its challenges. For some researchers, PPI presents a new way of working. While they undoubtedly see the benefits, in practice some researchers may find it difficult to identify how they should select and involve patients. People affected by epilepsy may find the scientific jargon inaccessible or struggle to understand what the research is trying to achieve. They have also reported that the PPI process can feel like a box ticking exercise. We’ve developed our Shape Network to overcome these barriers and to foster and strengthen the collaboration between the people affected by epilepsy and researchers.

FOR PEOPLE LIVING WITH EPILEPSY We are providing an ongoing programme of education and preparation workshops so network members understand the research process and their role in supporting highquality studies.

FOR RESEARCHERS We are facilitating and guiding the engagement with people affected by epilepsy, ensuring the process is planned appropriately and that study information is accessible.

FROM RECRUITMENT TO RESEARCHERS Our Shape Network is ensuring that the voices and priorities of people affected by epilepsy are considered in the projects we are funding. We have successfully piloted the involvement of network members in our research funding processes and connected researchers with network members to improve existing studies.

THE SHAPE NETWORK’S FIVE STRATEGIC PRIORITIES Aligning with Epilepsy Research UK’s mission, the Shape Network Steering Group has set out five strategic priorities that have underpinned how we are developing the service.

SHAPE NETWORK VALUES Meaningful:

Championing the ambition for involvement in research to be consequential

Inclusive:

Recognising the value that the diversity of people affected by epilepsy bring to research

Accessible: Empowering people to be involved in epilepsy research; ensuring that researchers can easily engage and involve people affected by epilepsy in research; and ensuring that research communications are accessible to people affected by epilepsy

Collaborative:

Building partnerships between people affected by epilepsy, researchers, research funders and associated condition patient organisations

CREATING A POWERFUL COMMUNITY OF RESEARCH INTERESTED PEOPLE AFFECTED BY EPILEPSY

CONNECTING RESEARCHERS AND PEOPLE AFFECTED BY EPILEPSY

INVOLVING PEOPLE AFFECTED BY EPILEPSY IN RESEARCH

ADVOCATING FOR GREATER INVESTMENT IN RESEARCH INTO EPILEPSY

Investing in the development of a community with a broad range of experiences to both guide and amplify research into epilepsy. Epilepsy comes in many forms and we therefore commit to ensuring we represent the different experiences of epilepsy such as seizure types, severity, treatments and impact of the condition.

Our network connects researchers with people affected by epilepsy, to enable involvement that will improve the quality of research. Epilepsy Research UK supports the PPI process for clinicians and scientists throughout the UK, facilitating and managing it for both researchers and people affected by epilepsy, from start to finish.

We are setting the gold standard for involving people affected by epilepsy in research. This includes our own research funding decisions, from identifying and evidencing priorities to focus groups and recruitment for research studies. We are also enabling research involvement carried out by other reputable organisations and highlighting a wide range of opportunities for people affected by epilepsy.

Through increasing awareness of epilepsy and the inequalities in research funding we are developing a policy proposition to lobby government and institutional funders to increase investment. Epilepsy Research UK is making research and its potential impact more visible and accessible, and empowering Shape Network members to share their views and experiences to influence policymakers and funders.

COLLABORATING WITH RARE EPILEPSY AND ASSOCIATED CONDITION ORGANISATIONS

Working in partnership with associated condition organisations and rare epilepsy groups we are ensuring a wide range of epilepsy experiences are reflected in important programmes of work such as the UK Epilepsy Priority Setting Partnership (PSP). By working together, we strengthen our ability to influence and fund research that will make a difference to people with rare epilepsies and associated conditions.

THE SHAPE NETWORK IN ACTION This year we launched the Shape Network Application Clinics as part of our annual grant application assessment process. The clinics gave researchers the opportunity to meet members of the network to discuss their proposed research. By involving people affected by epilepsy in the development of a proposal, we are supporting researchers to produce stronger applications. WHAT IS AN APPLICATION CLINIC? Our application clinics bring together researchers and people affected by epilepsy to encourage and enable discussion and debate about a potential grant application.

HOW DO THEY WORK? Researchers attend a virtual meeting with two members of the Shape Network that is facilitated by Epilepsy Research UK. During the clinics, discussion topics include how the research will benefit people affected by epilepsy and how best to involve people with lived experience. Network members also advise the researcher on ways to make the complex scientific language more accessible, and how best to communicate the potential impact of the research.

HOW ARE THEY MAKING A DIFFERENCE? For researchers, understanding the needs of people affected by epilepsy, working through the practicalities of research involvement, and demonstrating the potential impact of a project is invaluable. For people affected by epilepsy, knowing they have influenced the potential success of life-changing research is hugely rewarding. For Epilepsy Research UK, we know this is another vital step in ensuring the research we fund has been rigorously assessed by experts by experience.

I really enjoyed being involved in the application clinics as part of the Shape Network, and found the research applications so interesting. Wonderful to meet so many researchers and learn about the exciting research going on in labs and hospitals around the UK. Application Clinic Volunteer

During this year’s grant round, Shape Network members contributed valuable expertise gained from their lived experience, complementing the research expertise of the Scientific Advisory Committee (SAC). This involvement at the key stages in the decision-making pathway will accelerate further progress by ensuring people affected have supported Epilepsy Research UK to fund the best and most impactful projects. Professor Mike Cousin, Epilepsy Research UK SAC Chair

SHAPE NETWORK LIVE AN INTRODUCTION TO RESEARCH INTO EPILEPSY This May, we are inviting all members of the Shape Network to a half day conference at The Francis Crick Institute, London. We’ve developed an exciting and varied programme providing insights into various aspects of research, from fundamental research in the laboratory, clinical research in hospital settings, to the future of research, including data and artificial intelligence. Date: 17th May 2022, 10am-2pm Location: The Francis Crick Institute, London

PROGRAMME 10.00am Welcome and introduction 10.15AM THE RESEARCH PROCESS: LAB BASED RESEARCH Understanding animal models in research - Professor Stephanie Schorge, University College London The role of cell biology in epilepsy research - Professor Mike Cousin, University of Edinburgh Batman and the brain: Gene therapy for seizure prevention - Dr Gareth Morris, University College London, Panel discussion 11.15am Break 11.30AM THE RESEARCH PROCESS: RESEARCH IN A HOSPITAL SETTING What is clinical research? - Dr Rhys Thomas, Newcastle University Can genetics research solve unanswered questions for epilepsy? - Dr Kate Baker, University of Cambridge Digital doctors: Technology in epilepsy clinics - Professor Markus Reuber, University of Sheffield Panel discussion 12.30pm Light lunch 1.00PM LOOKING TO THE FUTURE – PATIENT DATA RESEARCH An Introduction to Understanding Patient Data Can mathematical modelling improve accurate diagnosis? - Professor John Terry, University of Birmingham Using Artificial Intelligence (AI) to analyse video data - Professor Sameer Zuberi, University of Glasgow Panel discussion 2.00pm Conference closes The conference is open to all members of the Shape Network and is free to attend. To register your interest for the conference, email ShapeNetwork@eruk.org.uk or scan the QR code.

ONCE IN A GENERATION NATIONAL SURVEY OF THE UK EPILEPSY COMMUNITY The response from the epilepsy community to our UK Epilepsy Priority Setting Partnership (PSP) has been extensive. Epilepsy Research UK Research and Involvement Officer Anna Norton shares what’s next for the PSP. For too long inequalities in research funding have slowed progress for epilepsy, impacting countless lives and costing the NHS billions every year. To drive the greater investment necessary to address these funding inequalities, we needed to understand and evidence the priorities of the entire epilepsy community. In November 2021, Epilepsy Research UK launched the UK Epilepsy Priority Setting Partnership (PSP) in conjunction with the James Lind Alliance and NIHR. This once in a generation national survey has gathered the views of the entire UK epilepsy community: people living with the condition, families, friends, carers, those bereaved by epilepsy, healthcare professionals and organisations representing the interests of people affected by epilepsy and associated conditions. This national survey is far bigger than one organisation. To ensure the UK Epilepsy PSP was truly representative, we reached out to all charities connected to epilepsy. With the help of our charity collaborators – Epilepsy Action, SUDEP Action, Young Epilepsy, Epilepsy Society and the International League Against Epilepsy (ILAE) British Branch – and our

national and regional partner organisations, our collective networks have reached every corner of the UK, and we have achieved a true representation of the diversity found in the UK and its epilepsy community. We received 2014 responses from the length and breadth of the UK - from Aberdeen to Aberystwyth, Dover to Derry, Newcastle to Newquay, Shetland to Southampton. These responses have resulted in over 5418 priorities for research. Collectively, they present a wide range of themes, from sudden unexpected death in epilepsy (SUDEP) to surgery, seizure triggers to support, side effects to stigma. The inclusivity, scale and diversity of responses to the UK Epilepsy PSP survey reflects not only the enormity of the epilepsy community, but your desire to be heard, treated equally and to drive change. Contributing 46% of all responses, people with epilepsy were the loudest voice in the survey, while the parents, family and friends of those who have or had epilepsy collectively represent 32%.

WHICH OF THE FOLLOWING BEST DESCRIBES YOU? Person with epilepsy Healthcare professional From an organisation representing the interest of people affected by epilepsy Parent of someone with epilepsy Family member or friend of someone with epilepsy Caregiver or former caregiver of someone with epilepsy Bereaved family member or friend of someone who had epilepsy Other

WHERE DO YOU LIVE?

164

responses

1673

responses

109

responses

GENDER 72.7% female 26.6% male 0.66% prefer to self-describe

ETHNICITY

AGE

% of responses

25 20 15 10 5

Asian/Asian British White Black/African/Caribbean/Black British Mixed/Multiple Ethnicity Other

WHAT HAPPENS NEXT? With the support of the UK Epilepsy PSP Steering Group, our research team is currently reviewing and categorising the priorities received into a longlist of in-scope and currently unanswered priorities. Once identified, this longlist will be interpreted into summary questions and shared with the epilepsy research community. To ensure the UK Epilepsy PSP continues to be truly representative, everyone must have their say in shortlisting these research questions. Every voice matters, so we will once again be asking you to get involved. The shortlist of research questions chosen by the epilepsy community will be discussed at the UK Epilepsy Priority Setting Workshop, where representatives from across the epilepsy community will be present to discuss the shortlist and determine the Top 10 priorities for research into epilepsy.

0-25

26-35

36-45 46-55

56-65 66-75 Over 76

Age ranges

UK Epilepsy Priority Setting Workshop details to be announced on our website and E:Bulletin shortly. Please sign up here to be the first to know: epilepsyresearch.org.uk/newsletter-sign-up

WHY IS THIS WORK SO IMPORTANT? Together, we are shaping the future of research into epilepsy. The priorities we publish will unite epilepsy and associated condition charities, driving collaborations between them. It will ensure that the research championed by Epilepsy Research UK and other funding bodies is rooted in the priorities of the entire epilepsy community. It will also help us to influence government and institutional funders to give epilepsy an equitable share of research investment, so innovations in the diagnosis and treatment of epilepsy will no longer lag behind other less prevalent conditions. Anna Norton Research and Involvement Officer, Epilepsy Research UK

“I WOULDN’T CHANGE TAKING PART IN THIS RESEARCH FOR THE WORLD”

The involvement of people affected by epilepsy makes a substantial and positive contribution to research into the condition, but in some cases it can also be life-changing. Sophie, 21, took part in Dr Antonio Valentin’s study, funded by Epilepsy Research UK, to investigate if electrical brain stimulation can be used to treat drug-resistant epilepsy. She has now been seizure-free for six years. “Due to my epilepsy, I wasn’t able to swim or ride a bike when I was younger. Even things like washing myself had to be so controlled – I remember distinctly my mum running up the stairs if I ever dropped something while in the shower. Equally, my learning was severely impaired, and I struggled for years with most subjects, especially maths and sciences. Being in school plays or playing sport in the evenings was near impossible due to the number of seizures I had.” Epilepsy surgery may be one option for people with focal epilepsy, but finding the brain region where seizures originate can be difficult. Dr Valentin and colleagues at King’s College London developed a new diagnostic technique called sub-acute cortical electrical stimulation (SCS) that can accurately detect the source of epileptic activity in the brain, helping to inform epilepsy surgery. The researchers also found that SCS can reduce seizure frequency for people with epilepsy when surgery is not an option. The results from Dr Valentin’s study also suggest that electrical brain stimulation may be effective in children with drug-resistant epilepsy. “Being involved with Dr Valentin’s research was life-changing. Prior to the trial my odds were pretty bleak, with multiple surgeons saying that I would probably be paralysed on the right-hand side of my body. Dr Valentin and Dr Richard Selway’s team clearly felt this was not an option and did their utmost to prove these odds wrong.” Since undergoing the procedure and surgery at the age of 15, Sophie has been completely seizure-free: “Despite the context of brain surgery, the experience was brilliant – I wouldn’t change taking part for the world.”

I hope these amazing techniques will be rolled out to many more people. Research like this has been life-changing for people like Sophie. Dr Antonio Valentin

RESEARCHERS SHARE HOW PATIENT INVOLVEMENT MAKES A DIFFERENCE ENSURING THE QUESTIONS WE ASK MAKE A LONG-TERM DIFFERENCE TO FAMILIES Signs of both epilepsy and autism often become apparent in early childhood. Therefore, it’s possible that early interventions in autistic children could lead to better control of their seizures. Dr Charlotte Tye was awarded the Epilepsy Research UK & Autistica Fellowship to identify predictors of autism in infants with epilepsy. Here, Dr Tye explains how patient involvement in this work could help improve quality of life for those affected by both conditions.

DR CHARLOTTE TYE

“We’ve brought together expert clinicians and neuroscientists to launch the Brain Development in Early Epilepsy (BEE) study and we’re inviting families of infants with epilepsy to take part. A combination of cutting-edge and baby-friendly brain and behavioural measures, collected over several points in the first two years of life, will provide rich information on early development One of the technologies we’re using is EEGs, which tell us about the “wiring” of the brain and how different regions are connected. Advances in EEG technology allow us to measure the brain activity of infants, from the safety of the family home. Identifying patterns of early brain development can predict later behaviour and indicate how best to support families of children with epilepsy. The BEE team is passionate about involving families in our research. We’ve integrated a Parent Priorities project (BEEPP) into the wider study and we’re partnering with charities and parents of young children with epilepsy – including the Epilepsy Research UK Shape Network. This will ensure that the questions we ask are important to families and will have the greatest positive impact on long-term quality of life.” To find out more about the study, please visit: beestudy.co.uk/bee-pp

CUMBERLEGE REVIEW – HOW RESEARCH AND PARENTS HIGHLIGHTED THE RISKS OF VALPROATE Sodium valproate is an effective anti-epileptic drug prescribed to patients to control seizures, as well as being prescribed for bipolar disorder and migraines. The drug is no longer prescribed to women of childbearing age unless they are on a Pregnancy Prevention Plan (PPP), due to the implementation of new guidelines based on recommendations from the European Medicines Agency following a parent-led campaign.

DR REBECCA BROMLEY

Research funded by Epilepsy Research UK was one of several important initial studies that led to the understanding that taking sodium valproate during pregnancy carries a 4 in 10 risk of developmental disorders and roughly a 1 in 10 risk of birth defects for the baby. Alongside the efforts of campaigners, this work carried out by Dr Rebecca Bromley provided the evidence needed to drive this change. Dr Bromley said: “Patient-led campaigns were certainly at the forefront of the changes which occurred with valproate, although it took time for their voices to be heard. Without the campaigning from patient groups I’m unsure as to whether we would have seen such significant regulatory intervention.” Epilepsy Research UK continues to support research on this important topic, currently funding Dr Bromley’s ongoing Endeavour Project Grant addressing Neurodevelopment After Prenatal Exposure to Seizures (NAPES) Study, and playing an active role in the Valproate Stakeholders’ Network (VSN) since it formed in January 2016, to help raise awareness of the risks of valproate for women.

YOUR POWERFUL SUPPORT SARAH’S #6FORTHE600 MONTHLY HALF MARATHONS Sarah became a supporter because her aunt and good friend both live with epilepsy. When many running events were cancelled in 2020 and 2021, Sarah didn’t let that stop her fundraising. She decided to run at least one half marathon every month, for the whole of 2021. One of the half marathons was the Great North Run, where we had the pleasure of meeting Sarah in person. Each half marathon took place in a different location the most obscure being along the Holy Island Causeway. Alongside these half marathons, Sarah also organised a series of #6forthe600 cake sales and small runs, raising a whopping £2,000. Sarah said: “I’ve had tremendous support from my boyfriend, who has run all the races with me. I ran every single one for my auntie, my good friend and everyone else who suffers with epilepsy. I see the impact it has on their lives and want to help research continue and improve, eventually enabling people to live free from epilepsy. It’s been challenging for me personally to run these races, but not half as challenging as for people living with the condition. I hope to continue my fundraising into 2022 with a new challenge.” Thank you to Sarah for all she does to support research into epilepsy. We can’t wait to see what Sarah comes up with for 2022.

UPCOMING CHALLENGES CHAD’S UK COASTLINE CYCLE Our super supporters often use the New Year as a chance to set themselves a challenge to test their fitness and fundraising abilities. In 2022, Chad will be cycling the equivalent of the UK coastline. That’s a total of 11,076 miles in the year, 213 miles per week, or 30 miles a day. Talking about his challenge Chad said: “I’m doing this to raise money for Epilepsy Research UK. My 8-year-old son was diagnosed with epilepsy three years ago so my family and I know first-hand the importance of the work they do. This will be a very tough challenge, but one I’m determined to complete.” We’d like to thank Chad for the incredible effort he’ll be putting in to raise money for vital research. If Chad has inspired you to come up with a big challenge of your own, please get in touch.

FOOTBALL TOURNAMENT FOR RESEARCH IN MEMORY OF WILLIAM WORKMAN In June 2021, aged 21, William Workman tragically succumbed to a seizure that he never recovered from. When news broke of William’s death, his football club and other close friends immediately organised a tournament and raffle in his memory to raise vital funds for Epilepsy Research UK. William was 19 years old when he was diagnosed with epilepsy. The cause of William’s seizures was never discovered, despite extensive investigative work by the neurology team at Southmead Hospital in Bristol. William never knew when his seizures were coming and had very little recollection of them happening. William was a goalkeeper for Kingswood Colliers 5-a-side football team and would often come home bruised and battered from a game – and that was the games they won! In William’s memory, 16 teams signed up to play in a charity football tournament. Kits were made with photos of William and his name. A minute’s silence was held before the kick-off of the final game. The Kingswood Colliers – now renamed Workman 21 FC in William’s memory – made it to the final and the tournament raised over £2,000 in loving memory of William. The tournament will now be held annually in William’s memory. It is fantastic to see the young friends of William celebrate his life and support research with this brilliant and moving event. Our deepest condolences and sincere admiration goes out to everyone who knew William – thank you for choosing to support vital research in his memory.

FIREFIGHTERS THREE PEAKS CHALLENGE Firefighters Mark and Josh are in training to take on the Three Peaks Challenge – climbing the highest mountains of England, Scotland and Wales within 24 hours – in full firefighting kit! Josh said: “On Saturday May 14th 2022, Derbyshire Fire & Rescue Firefighters, FF Harvey (Shirebrook Retain) and FF Roberts (Bolsover Retain) will be attempting the Three Peaks Challenge in aid of The Fire Fighters Charity, Prostate Cancer UK and Epilepsy Research UK. We will be completing the challenge in full fire kit and BA cylinders, adding roughly 20kg extra to what’s already an ambitious task.” We’re exhausted just reading this! We would like to wish Mark and Josh the very best of luck with this gruelling challenge. You can follow the pair’s efforts on Twitter @2Firefighters24.

EVENTS ARE BACK!

LET MEE HELP YOU! To sign up to any of these events or discuss them in more detail, please contact our Marketing & Events Manager, Becca Mee: rebecca.mee@eruk.org.uk or call us on 020 3096 7887.

THE RETURN OF THE BRAINATHLON The Brainathlon is a virtual event brought to you in collaboration with our friends at Brain Research UK and Brain Tumour Research. So, how does it work? Simply run 15 miles, walk 10 miles and climb 1.2 miles (or 2,500 individual stairs) to complete the total 26.2 miles of the Brainathlon. Take on the challenge on your own, or as part of a relay team of three and you can do all three challenges on one day or break it up during the week – the choice is yours!

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. 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. Claire, previous Brainathlon participant Complete the challenge during Brainathlon Week, Monday 25 April – Sunday 1 May 2022, and raise £100+ per person to receive your specially commissioned Brainathlon medal. Raise over £500 and you’ll get a personalised Brainathlon water bottle. Sign up today and you’ll get everything you need, including training tips, access to our Brain Beats Spotify playlist and tips on how to reach that all-important fundraising target.

RIDE FOR RESEARCH WITH RIDE LONDON Make a huge difference this year and #RideforResearch. We have a limited number of places for those wanting to join #TeamERUK for the return of the iconic Ride London event. Taking place on Sunday 29 May, this year’s Ride London has a new route into the beautiful countryside of Essex. Entry is free, but we ask that all riders aim to raise at least £500 in sponsorship. If you were one of the lucky ones who managed to secure a ballot place, we’d also love to have you in the saddle for #TeamERUK. Once you’re signed up, we’ll be on hand to help you prepare for the event and reach your fundraising target. You’ll receive this season’s must-have cycling garment – the Epilepsy Research UK jersey – and our team will be there on the big day with lively cheer points to give you a much-needed boost.

BE A LOCAL HERO We’ve partnered with Run for Charity to offer our #TeamERUK runners a range of fantastic events, so wherever you’re based and whatever takes your fancy, we’ll have you covered. To find out more and sign up for any of these events, please visit: epilepsyresearch.org.uk/local-events/

SCOTLAND

- Edinburgh 10k - Scottish Half Marathon - Spartan Beast Scotland

NORTH EAST

- Hull 10k - Gateshead Half Marathon

YORKSHIRE

- Yorkshire Marathon - Sheffield Half Marathon - Leeds 10k

NORTH WEST

- Manchester Half Marathon - Chester Half Marathon - Solihull 10k

EAST OF ENGLAND

- Gear 10k - Norfolk Inflatable 5k - Hertfordshire Half

WALES

- Wales Marathon - Swansea Triathlon - Chepstow Racecourse 10k

SOUTH EAST

- Oxford Half - Milton Keynes Marathon - Kempton Park 10k

SOUTH WEST

- Cheltenham Running Festival Half - Inflatable 5k

LONDON SOUTH ENGLAND

- Bournemouth Half - Brighton 10k - Goodwood Motor Circuit Marathon

- Hackney Half - Hampton Court Palace Half Marathon - Victoria Park 10k

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 improving treatments and therapies, and hope for tomorrow through lab-based studies seeking to prevent epilepsy. By leaving a gift in your Will to Epilepsy Research UK, you’ll help to secure the future of research and work towards our collective vision of a life free from epilepsy. We understand that your loved ones come first. Once you’ve remembered them, would you consider leaving a gift in your Will to Epilepsy Research UK? No matter how large or small, your gift will be a lasting legacy through funding research. Dawn is leaving a gift in her Will to ensure research will stop epilepsy devastating lives: “I believe the gift in my Will to Epilepsy Research UK will benefit future generations living with epilepsy and help prevent other families going through the terrible pain of losing a loved one to this devastating condition.” Gordon and Gill’s family have been greatly affected by epilepsy. In hope of a future where epilepsy can be safely controlled, they’ve remembered Epilepsy Research UK in their Will.

We look forward to a time when epilepsy has less impact on people’s lives. It means so much to us that, through a gift in our Will, we can contribute to a better future for people with epilepsy. Gordon and Gill To receive your Gifts in Wills guide or if you would like more information, please visit: epilepsyresearch.org.uk/gifts-in-wills Alternatively, you can contact our Head of Donor Relations, Jo, on 020 3096 7887 or jo.finnerty@eruk.org.uk.

We’re so grateful to Epilepsy Research UK and to all the supporters who raise funds for this fantastic cause. Thank you for giving us the opportunity to train and inspire the next generation. Professor Cathy Abbott & Professor Richard Chin Epilepsy Research UK funded researchers

NO COST FUNDRAISING Avoid the queues and crowds while fundraising for Epilepsy Research UK. Here are some great ways to support vital research into epilepsy while you shop or sell online. Celebrating a special occasion? Whether it’s remembering a loved one or wanting to mark Purple Day, 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. 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. One small act could make a big difference. Simply go to smile.amazon.co.uk and select ‘Epilepsy Research UK’ as your charity. Easyfundraising allows you to raise donations for Epilepsy Research UK whenever you shop online. With over 4700 retailers on their list, you could turn your everyday online shopping into FREE donations! Looking to sell or dispose of an old car? Giveacar arrange free collection then either sell your car at auction or scrap it, with the proceeds going to charity. To ﬁnd out more and donate the proceeds to vital epilepsy research, visit giveacar.co.uk or call 020 7736 4242 quoting ‘Epilepsy Research UK’.

Give as you Live Online is a free and easy way to raise money for Epilepsy Research UK, just by shopping online. All you need to do is select Epilepsy Research UK as your chosen charity, create your account and then you can get shopping at over 5,500 retailers through their website.

Find more info on all options at epilepsyresearch.org.uk/no-cost-fundraising

WEEKLY LOTTERY

Join our Weekly Lottery to be in with a chance of winning a £25,000 jackpot while raising funds for vital research into epilepsy.

There are some great prizes up for grabs:

- Five digits in the correct place wins £1,000 - Six digits in the correct place wins £25,000

- Three digits in the correct place wins five free entries into the next draw - Four digits in the correct place wins £25

uld You co ith a be in wto win e chanc 0

£25,00

Visit our website and enter your details – it’s that simple! You’ll be given a six-digit lottery number for each £1 entry, the more entries you have, the greater your chance of winning. epilepsyresearch.org.uk/lottery

PAWS WHAT YOU’RE DOING...

#PurrpleDayPets IS BACK! DRESS YOUR PETS IN PURPLE THIS PURPLE DAY We heard your calls and we listened. This month sees the return of the phenomenon that is #PurrpleDayPets!

• Whoever takes our favourite photo will win an Epilepsy Research UK goodie bag – we’ll be announcing the winner once all submissions are in.

But this year, it’s bigger, better and purple-er than before. Following the huge popularity of last year’s event, we’re once again handing over the reins to our furry friends to help increase the visibility of epilepsy and raise vital funds for research this Purple Day – Saturday 26 March. Joining the #PurrpleDayPets movement is so easy…

WHAT IF I DON’T HAVE A PET?

• Share your photos on social media throughout the week, from Monday 21st until Saturday 26th March, using the hashtags #PurrpleDayPets and #PurpleDay (don’t forget to tag us!) • Ask your friends and family to show their appreciation by resharing the photos or making a donation via our website. Why not challenge a friend to a Purrple-Pet–Off and nominate them in your post too!

Pets may be substituted with willing family members, partners or friends… just get involved and help us paint the internet purple!

OTHER WAYS TO SUPPORT There are many other ways to support vital research into epilepsy this Purple Day; from setting up a regular gift on our website, to creating your own Facebook fundraiser, or signing up to a sporting event. Our dedicated fundraising team are always happy to have a chat if you have any questions or need help choosing the perfect fundraising activity for you!

Need some ins-purr-ation? Here is last year’s winning photo from the team at social care charity Quarriers – don’t they look paw-some!

7-14 Great Dover Street London SE1 4YR Registered charity (1100394)

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