Focus Newsletter - Spring 2020

Focus NEWSLETTER SPRING 2020

ACCELERATING INNOVATIONS The last decade has seen important advances in our understanding of the brain. Rapid expansion in the field of genetics has allowed us to understand many of the steps in the assembly and growth of the brain before birth and after, and how some of these steps can go wrong, resulting in epilepsy and other brain conditions.

Improvements in technology have allowed scientists to use this knowledge to build sophisticated models of how the brain operates, in particular to understand how and why the brain can suddenly switch from normal activity into a seizure. We are beginning to grasp how abnormalities of the phenomenally complex ‘wiring’ of the brain, in conjunction with brain cells that may be prone to firing abnormal electrical signals, can give rise to epilepsy. These computer models also allow us to predict which brain regions are responsible for driving seizure onset, and how the electrical activity of these brain regions could be manipulated to prevent seizures. New innovative techniques are also being developed to predict how epilepsy and its treatment

may affect the development of important normal brain functions in children, such as language.

In order to make use of these brain models, we need innovative new methods to measure and observe brain electrical signals in real time, and innovative new methods to directly alter and manipulate the electrical activity of the brain. This scientific field is called Brain Computer Interface (BCI) and is a major focus of brain research, attracting major entrepreneurs such as Elon Musk.

I’m excited ERUK is supporting projects focused on accelerating innovations. These projects include the measurement of brain electrical signals, building computer models to understand and control epilepsy,

developing new methods to alter brain activity to prevent seizures, and developing new methods to understand how language development may be altered in children because of their epilepsy and its treatment. Innovation involves more than just scientific research and discovery; innovation is focused on bringing new ideas to the benefit of people as quickly as possible.

Inevitably, innovation involves risk, and a crucial role of a research-focused charity such as ERUK is to identify potential innovation that will bring important benefits to people with epilepsy.

Professor Mark Richardson Trustee, Epilepsy Research UK Vice Dean (Neuroscience), King’s College London

INSIDE THIS ISSUE: 4

New Joint Fellowship to drive forward treatment for childhood epilepsies

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Spotlight on research we are currently funding

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Seizure free and achieving a life free from epilepsy

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Thank you to our fundraising heroes

LIFE CHANGING LIFE SAVING RESEARCH epilepsyresearch.org.uk

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OUR IMPACT IN 2019

MOVING US CLOSER TO A LIFE FREE FROM EPILEPSY Last year we took some big steps towards our vision of a life free from epilepsy. In May we announced £1million grant awards for ground-breaking epilepsy research, taking our total investment to over £10million. What’s more, our research investment helped unlock additional funding, with every £1 invested leveraging, on average, a further £5.16 from institutional funders.

We know it will take a global effort to achieve our vision. Last year our International Expert Workshop brought together 50 world-class researchers from 36 institutions and 11 countries.

£1

£5.16

By bringing together the world’s leading researchers in one place, to share ideas and expertise, it enables them to go back to their laboratories with new knowledge to complement their own research.

Of course, these achievements are positive, but we can’t stop now. This week, another 600 people will be given the lifechanging news they have epilepsy. For them, and for the 600,000 people currently living with epilepsy in the UK, we need to be relentless in driving and enabling life changing and life saving research.

Our ability to fund and support research is only made possible thanks to our incredible supporters, from small children sacrificing their pocket money to people leaving legacies in their will.

Thank you. What we achieved in 2019 is directly because of your passion to change lives. With your continued support we will continue to accelerate innovations into this potentially devastating condition.

Maxine Smeaton ERUK CEO

Embracing Complexity launch, collaborating to influence policy and practice

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Invested a further ÂŁ1million in research

Hosted our 12th International Expert Workshop

Awarded Dr Richard Burman the CĂŠline Newman Basic Science prize

Led the ERUK Neurobiology of Epilepsy session at the ILAE conference

Launched a Joint Fellowship with Autistica

Revamped our website

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CULTIVATING AN ENVIRONMENT FOR INNOVATION IN 2020 Creating new collaborations where innovation can both thrive and accelerate is a key part of our work in 2020. We start the year with new collaborations, new people and new programmes of work.

JOINT FELLOWSHIP WITH YOUNG EPILEPSY We are thrilled to announce a new Joint Fellowship Award with Young Epilepsy.

The award aims to drive forward innovations into the treatment of childhood epilepsies to reduce the impact of the condition on children and their families.

Approximately 112,000 children and young people are living with epilepsy in the UK. Epilepsies starting in childhood may be associated with other conditions affecting learning, motor control, cognition and behaviour. Existing anti-seizure medications have had little or no impact on the neurodevelopmental associated conditions of epilepsy. Through supporting research in this underfunded area, we aim to change this.

Professor Helen Cross, Prince of Wales’s Chair of Childhood Epilepsy, President of ERUK & Young Epilepsy Trustee said:

“Contributing to research into the childhood onset epilepsies and associated comorbidities, an often neglected area, offers a real chance of making a difference to children with epilepsy and their families.”

The Young Epilepsy Panel, made up of children and young people living with epilepsy, will be asked to prioritise areas they would like to see answered by research. These priority areas will influence the decision-making criteria when awarding the fellowship grant.

112,000 children and young people are living with epilepsy in the UK

Maxine Smeaton, ERUK Chief Executive said:

“Epilepsy in childhood can have a life changing impact on families. We are investing in pioneering research that offers a very real possibility of preventing epilepsy in the future.”

Applications to address the causes, prevention and clinical management of childhood epilepsies will open in May.

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ERUK’S FIRST DIRECTOR OF RESEARCH AND INNOVATION Dr James Pickett has been appointed as our new Director of Research and Innovation. James is joining us after 10 years with Alzheimer’s Society, where he was instrumental in growing the dementia research programme. James created many new national and international research partnerships and collaborations that spanned academia, government funding, industry and people affected by dementia.

During this time the charity and the UK government tripled financial investment in dementia research.

James has a PhD from the University of Cambridge and has previously worked in journal publishing at Nature and in grant funding at Diabetes UK. Speaking about his appointment to the newly created role, James said:

“ I’m excited to be joining ERUK. I know the charity is trusted and respected by the research community, as well as people living with epilepsy and their families. I look forward to developing the research strategy and fostering collaborations to generate world-class epilepsy research.”

2021 INTERNATIONAL EXPERT WORKSHOP Our 13th Expert Workshop will bring together over 60 international experts in epilepsy research for a two-day meeting to discuss emerging approaches in the treatment of epilepsy.

To be held at the University of Oxford in March 2021, the meeting will be Chaired by three of the UK’s leading experts in innovative epilepsy research and clinical practice.

Professor Stephanie Schorge, University College London, Professor Esther Rodriguez-Villegas, Imperial College London and Dr Rupert Page, Poole Hospital NHS Foundation Trust together will create a rigorous programme including topics such as wearable technology, patient data and personalised medicine.

During the event researchers will be able to explore innovations in epilepsy research and management,

drive forward the development of new therapies and discuss the future of precision treatments for patients with the aim of addressing epileptic seizures and their associated neurodevelopmental disorders.

Bringing together experts in this way to share information and ideas fosters national and international collaborations and sparks new insights and ideas.

The sharing of information continues after the event with the publication of a journal, detailing the research discussed, delegate reviews and recommendations for future research.

March 2021

THEME:

Emerging approaches in the treatment of epilepsy

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ACCELERATING INNOVATIONS Accelerating innovations in research not only brings us closer to our ultimate goal of a life free from epilepsy, but helps improve diagnosis and treatments for people living with the condition today. Here are just some of the projects we are currently funding thanks to your support.

WEARABLE BRAIN SCANNER AIDS ASSESSMENTS FOR SURGERY Dr Umesh Vivekananda and colleagues at UCL have successfully demonstrated the use of portable Optically Pumped Magnetoencephalography (OP-MEG) in an epilepsy patient with unrestricted head movement.

Dr Vivekananda

MEG is a neuroimaging technique for mapping brain activity that can pinpoint the source of epileptic seizures, but it requires patients to stay still for long periods of time. This can be especially difficult for children. Dr Vivekananda’s pioneering use of portable MEG means that patients can move freely during a scan, without compromising the accuracy of the scan results.

“This has the potential to revolutionise the assessment of people for epilepsy brain surgery.”

MATHEMATICAL TECHNIQUES IMPROVE DIAGNOSIS In 2015 Professor John Terry and colleagues at the University of Exeter were awarded an ERUK project grant to investigate how brain activity evolves during epilepsy using mathematical techniques. The project finished in 2019 and the research team were able to use their computer-based mathematical techniques to inform clinical teams of the location in the brain where the epilepsy originates. This information can then be used to plan the best possible course of treatment.

Professor Terry said: “The misdiagnosis of epilepsy remains a significant clinical problem, which can lead to delayed or unnecessary treatment. Our computer-based tool offers real potential to bring personalised medicine into epilepsy, which will ensure that people presenting at clinic receive an effective diagnosis and rapid access to the most appropriate treatment.”

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CORTICAL ELECTRICAL STIMULATION IN DIAGNOSIS AND TREATMENT Epilepsy surgery may be one option for people with focal epilepsy, but finding the brain region where seizures originate can be difficult.

Dr Antonio Valentin and colleagues at King’s College London have 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. Excitingly, the researchers have also found that SCS can reduce seizure frequency for children and adults with epilepsy when surgery is not an option. As many as 30% of people with epilepsy experience seizures that do not respond to medication.

“I hope these amazing techniques will be rolled out to many more people. Research like this is life-changing for children like Sophie”

30% OF PEOPLE LIVE WITH UNCONTROLLED SEIZURES THAT DO NOT RESPOND TO MEDICATION

MAKING SEIZURE FORECASTING A REALITY Some people with epilepsy notice they are more likely to have seizures if they are tired, stressed, or have missed medication. Measuring the influence of these factors on the brain might bring us closer to seizure forecasting.

Professor Mark Richardson King’s College London

In recent years, there have been exciting advances in research on EEG monitoring, demonstrating that monitoring can help with seizure prediction. Professor Mark Richardson and colleagues at King’s College London are asking participants to use new portable EEG and smartwatches to record, from home, their own EEG twice a day, for ten minutes. The researchers will combine this data with information on seizure occurrence and smartwatch data to predict future seizures.

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A LIFE FREE FROM EPILEPSY Thanks to ground-breaking research, 17-year-old Rachel is now seizure free and has achieved a life free from epilepsy.

The first signs of Rachel’s epilepsy appeared at two, when she began having seizures. The seizures became more frequent during childhood, to the point where Rachel was experiencing up to 30 a day. Dad Nick explains: “After many appointments, tests and stays at Great Ormond Street Hospital, Rachel was diagnosed with benign occipital epilepsy.

The team identified a specific area of tissue within the occipital lobe as the cause of the seizures.”

Thanks to a breakthrough in research, brain surgeons advised they were confident the piece of tissue could be removed and Rachel’s seizures would likely stop. The news was met with a mixed reaction of hope, excitement, but also fear from the family.

In February 2010, eight-year-old Rachel underwent surgery to remove a piece of tissue the size of a 20 pence piece from her brain.

The family saw a dramatic and instant transformation in Rachel.

With the help of medication, speech therapy and a child psychologist, Rachel made a full recovery and has had no seizures since.

I wanted to take on the London Marathon because I’m only seizure-free today due to the work of researchers, scientists and clinicians.

Despite the difficulties Rachel experienced during childhood, she feels she has been lucky. Rachel said: “I’ve spoken to many young people who went through what I did, but for whatever reason haven’t been able to get their seizures under control. I feel so fortunate to be able to live

without the effects of epilepsy now and I do not take this for granted.”

Rachel has been off antiepileptic medication for nearly five years and suffers no lasting effects from her epilepsy. Turning 18 in March, she is studying for a double diploma in Business and Health and Social Care. Alongside her studies she enjoys horse riding, swimming and holds a full lifeguard qualification.

This year Rachel is taking on a different sort of battle – and will be running the London Marathon for Epilepsy Research.

Rachel said:

“Along with the care I received in GOSH and the skills of the surgeons, I know that it was research that saved me. I am so grateful for the life that research and surgery have given me.”

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How surgical interventions in epilepsy have been aided by ERUK funded research Approximately one-third of children with epilepsy do not respond to medication, and a proportion of these children, like Rachel, may be considered for surgery to remove the part of the brain where their seizures originate.

Before surgery, a neurosurgeon needs to obtain an accurate image of the child’s brain and the areas in which important functions (such as language) reside, to avoid removing or damaging them during the operation. This is achieved using imaging and neuropsychological testing. However, children’s seizures often originate in one of these critical brain regions, and this makes the decision of whether or not to operate even more difficult.

ERUK funded research carried out by Professor Torsten Baldeweg and his team at UCL investigated the long-term impact of epilepsy surgery in children. Professor Baldeweg used state of the art neuroimaging techniques, as well as language and neuropsychological tests. They demonstrated that children who had surgery had fewer seizures and better language and neuropsychological results than children who did not have surgery. They also revealed that the majority of children who were seizure free after surgery showed significant increases in brain volume and had improved cognitive scores.

Based on the patient data generated through this research, doctors can now make better predictions of cognitive outcomes for children following surgery.

These results have also helped make the case for earlier detection and surgical treatment in children for whom surgery is an option.

Professor Baldeweg said: “These studies are unique, in that we have been able to follow patients for up to 15 years after surgery, being able to chart their cognitive and educational trajectory during this important part of their lives.”

The grants have enabled us to conduct a major study which is vital for the field of paediatric epilepsy surgery. This has also provided an important benchmark for the evaluation of non-invasive neuroimaging methods. Without ERUK funding, this study would not have been possible.

We are immensely grateful to ERUK and its supporters for this support.

Building on the results of their ERUK funded projects, the research team are currently conducting a 20-year review and follow up of over 1,000 children who had neurosurgical treatment for their epilepsy at Great Ormond Street Hospital since 2000. The aim is to better predict who will benefit from neurosurgery in terms of seizure freedom and to establish the longer-term impact of epilepsy surgery on cognition.

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CALENDAR OF VENTS 2020 5K AND FUN RUNS › Edinburgh Marathon Festival 5k - 23 May › Big Fun Run - July - Oct › Dog Jog - July - Oct 10KS › Brighton 10k - 19 April › Edinburgh Marathon Festival 10k - 23 May › Leeds 10k - 5 July

HALF MARATHONS › Hampton Court Half - 15 March › Hackney Half - 17 May › Edinburgh Half - 24 May › Great North Run - 13 Sept MARATHONS › Manchester Marathon - 5 April › Brighton Marathon - 19 April › London Marathon - 26 April › Edinburgh Marathon - 24 May

OBSTACLE RACES › Spartan - May - Oct › Rough Runner - April - Aug CYCLING EVENTS › Ride London Surrey 100 - 16 Aug

Entry is on a first come, first served basis. Do check our website for more details and more events as they get added!

SKY DIVING › If you have ever wanted to do a parachute jump here is your chance to make a thrilling tandem skydive from 10,000 feet! No experience is necessary as all training is given, and you can jump at no cost to yourself if you raise the minimum sponsorship!

OVERSEAS RUNS › Barcelona Half - 16 Feb › Paris Half - 1 March › Barcelona Marathon - 15 March › Paris Marathon - 5 April UK CHALLENGES › Easter Challenge - 11 April › Isle of Wight Challenge - 2/3 May › Jurassic Coast Challenge - 16/17 May › London to Brighton Challenge - 23/24 May › Lake District Challenge - 13/14 June › Cotswold Way Challenge - 27/28 June › Peak District Challenge - 4/5 July › South West Coast 2 Coast Challenge - 25/26 July › South Coast Challenge - 29/30 Aug › Thames Bridges Trek - 12 Sept › Thames Path Challenge - 12/13 Sept › Chiltern Challenge - 26 Sept

Contact us now and we will send you a full information pack and everything you need to take part in the experience of a lifetime.

OTHER WAYS TO GET INVOLVED 1

GOT YOUR OWN PLACE? If you have your own place for any events, we’d love you to be part of #TeamERUK. Get in touch with Jo and she’ll send you a #TeamERUK pack including: - ERUK running vest, T-shirt or cycling jersey - dedicated fundraising support - help with promotion on social media - cheering packs for your support team

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WORKPLACE FUNDRAISING Are your colleagues looking to do something fun while raising funds for a good cause? From fundraising challenges to organising your own event, we have lots of ideas that will inspire you and your team.

But, before you do anything else, why not send an email to your CEO, letting them know why ERUK should be your next Charity of the Year partner? You and your company could help accelerate the next research breakthrough into epilepsy.

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CORPORATE PARTNERSHIPS Whether or not your company has worked with a charity before, we can tailor a partnership specifically for you and support you every step of the way. Our corporate partners play a vital role in helping to fund our researchers. In turn, supporting us helps to engage employees and customers in a meaningful way.

With 1 in every 100 people living with epilepsy, the chances are someone at your work either has or is caring for someone with epilepsy.

From sponsoring an ERUK event, to a long-term strategic partnership there’s lots of ways to show your support.

For more information contact Georgina Roberts, Corporate Partnerships Manager on 020 3096 7887 or email georgina.roberts@eruk.org.uk

FEELING INSPIRED TO JOIN #TEAMERUK? We’ve highlighted a few of our favourite events coming up, but there’s so much more on offer. Why not have a chat with our ERUK Team Captain, Jo Finnerty, jo.finnerty@eruk.org.uk or drop us an email to find out what’s going on in your area?

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FUNDRAISERS IN ACTION In this edition we’re celebrating some of our fantastic Community Fundraisers

FESTIVE FUNDRAISING

Kirsty Stoddart and colleagues at STG Partnership held a Festive Fun Fundraiser

The Graham family braved the ice cold waters of Loch Goil for their Annual Ne’er Day Dip in memory of Andrew and Lynn

Clare Moffat and friends braved the winter cold to sing carols to raise funds

MEZZETTI FAMILY WIN CHARITY FUNDRAISER OF THE YEAR Lynne and John Mezzetti were named Charity Fundraiser of the Year at the Eastern Daily Press Stars of Norfolk Awards in December. With their local community’s support, Lynne and John raised a staggering £130,000 in memory of their teenage daughter Ellen.

Sarah Hosford took an icy Christmas morning dip in the Irish sea to support ERUK

£130,000 RAISED BY THE MEZZETTI FAMILY

Photo credit: Archant/Sonya Duncan

Nicki Walker held a Christmas open day at her home, raising £266 for her sister Tania’s memorial fund

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COMMUNITY HEROES

Leeds and London indie band Ten Hands High, held an acoustic tribute show at The Windlesham Club for Beverley Boulton

The Beaver Darts team in North Yorkshire staged their annual Beaver Darts Open raising £625, celebrating the life of Chris Allinson

Letty Gaze and friends in Tillac, south west France held a successful clothes sale, raising €3,000 for the Caspar Gaze Memorial Fund

Southend Parks Bowls Circle and President Phil Haslam raised £700 at their charity day, supported by Fairwood Bowls Club and Prittlewell Bowls Club

Saffron Walden band Flynt reunited to raise funds in memory of their friend Sophie Hannon.

Anna Hollingworth arranged a Bodyshop Party at the Pavilion, home of Rimington FC. Brenda and Allan Horne’s fundraising efforts included craft stalls, tombolas and Christmas fairs supported

by Aylesbury community friends, including the Charles Pope Ladies Choir and Dentacare.

Fiona Harrison Hill requested donations in lieu of gifts at her wedding in December, raising over £1,000.

THANK YOU Our research can only happen because of people like you. Thanks to your determination and commitment, researchers can accelerate innovations into the causes, diagnosis and treatment of epilepsy.

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YOUR LIFE CHANGING, LIFE SAVING LEGACY As the only UK charity exclusively dedicated to driving research into the causes, diagnosis and treatments of epilepsy, by leaving us a gift in your Will you’ll be making a vital contribution to helping us achieve a life free from epilepsy.

JEAN’S LASTING LEGACY Last year Jean left ERUK a significant gift in her Will. In life, Jean experienced the impact living with epilepsy can have – with her daughter who was profoundly affected and sadly died.

Jean’s sister Iris, and her niece Jane, share why supporting ERUK was so important to her. Talking about the challenges her sister had faced looking after a daughter with poorly controlled epilepsy, Iris said: “Jean was a very private person and not one to share her feelings. But when she came to write her Will she talked to the family about wanting to leave gifts to charities she cared deeply about, as well as to family members.

“Jean knew her family were all settled, and we all felt that it was her money and she should do with it what she thought best. My sister was a generous soul and wanted to do anything she could to alleviate the suffering of children, their parents and loved ones.”

Jean – a truly generous soul

Jane added:

“My aunt was a remarkable woman who endured many challenges in her life with unwavering strength, love and humour. We know she would have been thrilled to be able to contribute towards the great work you do.”

We remember with heartfelt thanks Jean, whose gift will support ground-breaking research.

As scientists we know that each increment in knowledge, every marginal gain, when added together can make big differences to the lives of people with epilepsy.

Professor Sameer Zuberi ERUK-funded researcher

What if your lasting legacy could be a life free from epilepsy?

By leaving a gift in your Will, together we can achieve our collective vision.

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RESEARCH BREAKTHROUGHS OF TOMORROW Gifts in Wills fund up to half our work. The gifts you write into your Will today, will help discover research breakthroughs of tomorrow.

Once you’ve remembered your loved ones, could you consider helping us deliver our ambitious vision to achieve a life free from epilepsy?

A SIMPLE PROCESS

Making a Will is essential for most people, ensuring your affairs are in order and plans to look after family are carried out in the way you wish. A solicitor can advise best on how to write your Will and keep it up to date.

IT DOESN’T NEED TO COST ANYTHING

As a supporter of ERUK you can use our free Will-writing service through the National Free Wills Network, giving access to solicitors across the country to have a simple Will written at no cost to you.

No matter how large or small, your gift will be a lasting legacy through funding research.

For more information about the National Free Wills Network or leaving a gift in your Will, please contact Jo at jo.finnerty@eruk.org.uk

IN MEMORY Many of our supporters have personal experience of epilepsy, and it is that experience they turn into action to support vital research. Sadly, for some families, their fundraising is in memory of a loved one who has died from epilepsy.

Lauren and Craig Thomson’s son Josh tragically died at five weeks old due to Ohtahara Syndrome. In a statement on their Just Giving site Josh’s parents said: “We wanted to give something back in memory of our beloved son Josh in the hope that his short precious life may create a legacy by helping to prevent other families who may face the same heartache and pain we’ve had to endure.”

Our heartfelt thanks go to Josh’s family and friends who, together, have donated over £10,000 to research in Josh’s memory. If you would like to make a donation please visit: www.justgiving.com/fundraising/craig-thomson15

AU REVOIR SHONA After 20 years at ERUK, Shona Scott will be exchanging her ERUK fleece for a sou’wester and sunscreen as she sails off into much deserved retirement.

We couldn’t let Shona go without taking a moment to say an enormous thank you for her incredible hard work, commitment and dedication to ERUK. It’s impossible to do justice to her achievements and the impact she has had, so instead we’re just going to share some photos back through the years.

But wait… you didn’t think we were going to let her away that easily. In December the Board of Trustees unanimously voted to make Shona a Vice President of ERUK. See you at the AGM! We are sure the whole ERUK community will join the team in wishing Shona the very best with her next chapter – we will miss her greatly!

Maxine, Chief Executive

A BIG THANK YOU Had Shona known the back page of this issue was devoted to her, she would have certainly wanted to say a personal thank you to all the supporters she has worked with during her time with ERUK – particularly to those who have chosen to raise funds for our charity in memory of a loved one.

Shona cares deeply about the whole ERUK community and has been greatly touched by the generosity and extraordinary fundraising endeavours of supporters, all of which have ensured that vital research continues.

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

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

Registered charity (1100394)