Focus newsletter – Spring 2021 #ALifeInterrupted edition

#ALifeInterrupted

Epilepsy interrupts the lives of ordinary, extraordinary people.

It’s invisible. It’s unpredictable. It’s frightening.

Focus NEWSLETTER SPRING 2021

#ALifeInterrupted - SHAPING THE FUTURE OF RESEARCH Dr Rhys Thomas is leading on the development of our SHAPE NETWORK to build the UK’s largest epilepsy patient population to influence and shape research. Here, Dr Thomas explains how our #ALifeInterrupted campaign will help to push research into epilepsy forward.

The global pandemic is affecting us all. Lives, incomes and businesses have been lost because of it. Research projects have been postponed and charities are seeing significant reductions in fundraising activity. While the impact of COVID-19 continues to be devastating, it is temporary.

Significant investment, political will and the power of research have combined to find a way to halt the interruption COVID-19 has caused. It shows what research can deliver if there’s a global emergency and sufficient resources.

Yet, long after the pandemic has gone epilepsy will continue to interrupt the lives of those affected. And, if we don’t take action now, it will continue to affect the lives of people for generations to come.

From a very early age I saw how epilepsy interrupts lives. When a friend had a

seizure at school while playing football, breaktime was immediately stopped.

We trudged back to the classroom while an ambulance took him to hospital. A life interrupted.

My uncle was a physics whizz and loved puzzles. Just as he was planning to leave home to find freedom at university he developed epilepsy and was put on medications that made him feel numb.

A life interrupted.

We know research is the answer.

But, the figures detailed in our #ALifeInterrupted - Shaping the Future of Research into Epilepsy report are damning. Funding for epilepsy research lags behind other neurological conditions affecting far smaller patient populations.

While billions have been invested in COVID-19 research, the latest annual sum for epilepsy is a trivial £18 million.

A figure dwarfed by the £1.5 billion epilepsy costs the UK annually.

Epilepsy Research UK’s #ALifeInterrupted campaign aims to address this imbalance. We need to invest in the best research and researchers, and we need to prioritise areas that are most important to people living with epilepsy. That’s why we are asking you to pledge your support for our #ALifeInterrupted campaign, and encourage anyone you know with epilepsy to join our SHAPE NETWORK. With your help we will show that a life free from epilepsy is possible through investment in carefully targeted research, so it can deliver hope, just as it did for COVID-19.

Dr Rhys Thomas Trustee, Epilepsy Research UK Consultant Neurologist Epilepsy Neuroscientist

INSIDE THIS ISSUE: 6

How you can influence research

11

Sharing research outcomes

12

Browse our blogs, watch our webinars

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Why we do what we do LIFE CHANGING LIFE SAVING RESEARCH epilepsyresearch.org.uk

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JOIN OUR NETWORK AND HELP US DRIVE RESEARCH If we don’t take action now epilepsy will continue to interrupt lives. The current lack of investment in epilepsy research is staggering.

As one of the UK’s leading epilepsy research funders, we are taking urgent action to correct this, but we need your help.

We need to evidence the impact of epilepsy and gain greater understanding of the priorities for people living with the condition. By doing so we will be able to drive greater investment in research and accelerate innovations in the treatment and prevention of epilepsy.

Last year, as part of the launch of our #ALifeInterrupted campaign, we called on people affected by epilepsy to help us with this vital programme of work.

Our ask is simple – help us build our SHAPE NETWORK and create the UK’s largest ever community of people living with epilepsy to drive, enable and shape future research.

The response so far has been both humbling and overwhelming. Within days, hundreds of people living with epilepsy completed our research priorities questionnaire and joined our SHAPE NETWORK. If you are living with epilepsy, and haven’t already done so, please do consider completing our research priorities questionnaire and, if you wish to be further involved in research, join our network. Your involvement is vital in

helping us to unlock further progress. Who better to push forward research than those affected?

Our #ALifeInterrupted special edition FOCUS, aims to give you an insight into what it means to be more involved in research. You know only too well the interruptive and disruptive nature of epilepsy. You possess essential insights that will hugely benefit research. You know how a change in dosage affected your ability to perform certain daily activities, what helped you endure an especially difficult aspect of your condition or treatment, or why a research study should be designed in a certain way so that you can be more easily be involved.

Epilepsy has been with us for centuries and will continue to be with us for many more years unless we do something about it. Please join us and take action to supercharge research into epilepsy by visiting epilepsyresearch.org.uk/ALifeInterrupted.

Maxine Smeaton CEO, Epilepsy Research UK

SHAPE NETWORK JOIN TODAY Visit epilepsyresearch.org.uk/ShapeNetwork Shape the future of epilepsy research

S HAP

E P I L E P SY RESEARCH NETWORK

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ADDRESSING THE FUNDING GAP A staggering 100,000 emergency admissions are due to epilepsy each year and it costs the NHS an estimated £1.5 billion annually. Despite this, the only number associated with epilepsy that isn’t huge is the amount of research funding it receives. Research funding into epilepsy lags behind other, less prevalent conditions.

Funding for epilepsy research receives only 7% of neurological research funding and just 0.3% of the £4.8 billion total spent on health-related research in the UK.

epilepsy research other health-related research

Our solution to the inequity in research funding is to engage and involve people living with epilepsy in a way that has never been done before. We want people with epilepsy to be involved in shaping the future of epilepsy research to ensure areas identified are being prioritised and the evidence gathered is used to unlock further investment.

SHAPING THE FUTURE - OUR ACTION PLAN ENGAGEMENT

We have received a fantastic response to our questionnaire so far and the SHAPE NETWORK is growing by the day. But the more people we have, the greater and broader our knowledge will be about what is important to you. Epilepsy affects so many people in so many different ways - we need to hear how it affects you!

PREPARATION

We have established the SHAPE NETWORK steering group who are leading the development of a bespoke range of training programmes and information materials to help educate and prepare our Shape Members for the areas they are interested in getting involved. For example – application co-design, focus groups, research prioritisation or advocacy.

INVOLVEMENT

With a qualified and prepared task force of Shape Members, we will open our doors to opportunities to work alongside both clinical and academic researchers. We’ll involve Members in the assessment of our own grant applications and research priorities. We’ll involve Members in industry events and focus groups. We’ll work with Members to support policy influencing activities with government and institutional funders.

FUTURE PLANS

Once established, we will set out on a programme of work with you, the Shape Members, to set out your future priorities for epilepsy research.

Together, we will shape the future of epilepsy research.

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RESEARCH PRIORITIES FOR PEOPLE LIVING WITH EPILEPSY To accelerate progress in epilepsy research we need to be sure we are directing our efforts to where they have the most impact. Our SHAPE NETWORK research priorities questionnaire seeks to identify priority areas for people living with epilepsy. Hundreds of people have already completed our four question survey, helping us to identify some consistent themes.

THE FINDINGS SO FAR Hundreds of people have already completed the survey

Top three priorities for future research: REDUCING SIDE EFFECTS FROM DRUGS

NEW AND IMPROVED TREATMENT OPTIONS

MORE EFFECTIVE ANTIEPILEPTIC DRUGS

The top four ways epilepsy has interrupted lives: Z

Z 1. EMPLOYMENT

Epilepsy has clearly had a huge impact on people’s employment and career options.

Reasons given include being unable to work, discrimination and being unable to pursue their chosen career due to their condition.

2. SLEEP

Z

A high number of respondents shared how their condition caused interruptions to sleep, with a significant proportion experiencing insomnia.

3. MENTAL HEALTH

Responses to our questionnaire are providing strong evidence on the impact of epilepsy on mental health.

A high number of respondents described their experiences of depression and anxiety due to their epilepsy.

4. DAILY LIFE

Interruptions to daily life were varied and broad. Responses ranged from not being able to drive, to requiring constant care.

It is clear epilepsy has a significant impact on people’s ability to plan and control their day.

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When asked what one thing would be life changing …

35%

of people said that better medications with fewer side effects would change their lives

22%

of people said that preventing epilepsy and being seizure free would change their lives

When asked what proportion of funds we should allocate to clinical research versus lab-based research ...

Until that life changing day becomes a reality ... many people with epilepsy said being able to monitor or predict seizures would greatly help their quality of life until the day comes when they can be seizure-free

52%

said they wanted funds to be allocated to research that provides help for today

The questionnaire is still live on our website. If you or someone you know is affected by epilepsy, we urge you to take a few moments to complete it.

Visit epilepsyresearch.org.uk/ShapeNetwork

48%

said they wanted investment in lab-based research that provides hope for tomorrow

SHAP

E P I L E P SY RESEARCH

NETWORK

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HOW YOU CAN INFLUENCE RESEARCH People living with epilepsy offer invaluable insights and knowledge that will benefit researchers. The involvement of people with epilepsy in the design, implementation or evaluation of research undoubtedly makes studies more effective and credible.

By joining the SHAPE NETWORK you’ll be able to influence the type of research studies that receive funding, how the studies are designed and help us to secure increased investment. Here are some of the ways you can get involved: 1. Help researchers prioritise the research that is most important to you 2. Influence research study design 3. Strengthen our voice and call for increased investment Over the next few pages we will take you through some examples of how you can directly influence and shape epilepsy research. You can have a big impact on what research delivers now and in the future.

1. PRIORITISING RESEARCH The knowledge of people living with epilepsy can inspire unexpected research questions and ensure research is relevant to those it will affect. That’s why it’s important people living with epilepsy are able to influence the type of studies that receive investment.

There will always have to be tough decisions when deciding what research studies to fund. Here we have summarised three research studies Epilepsy Research UK is currently funding. But, if we could only fund two – which two would you choose? These are the types of decisions you could influence by joining our network.

GENE THERAPY ACTIVATED BY SEIZURES TO TREAT EPILEPSY

STUDY

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BACKGROUND Gene therapy is an exciting emerging treatment that can change our genetic code to treat the causes of a disease, rather than just its symptoms, and holds promise as a future treatment for drug-resistant epilepsy. This study by Emerging Leader Fellow Dr Gabriele Lignani is using innovative genetic tools to develop new gene therapy approaches for stopping seizure activity in patients with hard-to-treat epilepsies.

SIGNIFICANCE Once the new technique has been validated, it will allow for rapid screening of other candidate genes to find out which ones are able to stop seizure activity.

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USING GLOBAL PATIENT STUDY DATA TO FIND MARKERS FOR SUDEP

NEURODEVELOPMENT AFTER PRENATAL EXPOSURE TO SEIZURES

BACKGROUND Sudden Unexpected Death in Epilepsy (SUDEP) can be a tragic consequence of epilepsy, often occurring during sleep and accounting for around half of epilepsyrelated deaths. Evidence suggests that people who died of SUDEP often present altered patterns in heart rate and breathing before the event. This study led by Dr Beate Diehl is using patient data collected by epilepsy centres in Europe, Australia and the US to identify how sleep affects areas of the brain which control heartbeat and breathing.

BACKGROUND Children who are exposed to certain antiepileptic drugs (AEDs) in the womb are at risk of poorer neurodevelopment. However, if women with epilepsy stop taking AEDs during pregnancy, they risk having seizures, which may negatively impact the child and increase the mother’s risk of SUDEP. This study led by Dr Rebecca Bromley will investigate whether exposure to seizures in the womb has a negative effect on the baby’s neurodevelopment.

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SIGNIFICANCE This will help uncover why SUDEP frequently happens during sleep, which could in turn inform strategies to reduce epilepsy-related deaths.

STUDY

3

SIGNIFICANCE The results of this research will have an immediate impact on the care of the women with epilepsy who are planning a family, offering them important information to help inform difficult treatment decisions.

WHICH STUDIES WOULD YOU CHOOSE?

2. COULD YOU INFORM? People living with epilepsy offer vital knowledge and experience to help researchers make sure that studies are designed in such a way to make them sensitive to the needs of people with the condition. Here are three recent projects where people with epilepsy were involved in shaping the study.

SURGERY PATHWAYS: THE LIVED EXPERIENCE OF CHILDREN WITH EPILEPSY Surgery can help control seizures in childhood epilepsy if treatment with medication has been unsuccessful. It can be very challenging for families placed on the surgery pathway, due to the length of time waiting for a decision regarding eligibility, numerous medical investigations and appointments. All this can have subsequent impact for children and families on school, friendships, work and family life.

This research study by Dr Hanna Kovshoff was developed in response to families and medical teams reporting about how stressful this pathway is. Families’ voices are rarely sought in research about surgery, however this unique study aims to hear directly from children, their parents and siblings about their experiences of the epilepsy surgery pathway. This will be vital to ensure that health and education services can provide appropriate support for children and their families throughout the process.

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SEEING INSIDE: NON-INVASIVE BRAIN MAPPING OF EPILEPTIC ACTIVITY (SINIMA) Identifying where a seizure originates can lead to life changing surgery when antiepileptic drugs have failed. 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.

These types of scans can take much longer than other scans. Patients were involved in the study and helped to advise other patients on how best to prepare for the scan.

SECURE VIDEO SHARING TO IMPROVE REMOTE CARE FOR PEOPLE WITH EPILEPSY This study was developed by Professor Sameer Zuberi in response to feedback from families. Many have reported that they had been unable to securely share videos of seizures and spoke about their concerns this may have limited the clinician’s ability to accurately diagnose the epilepsy.

Researchers have now developed a secure video sharing platform which enables people with epilepsy and their families to share videos of seizures with their doctor using their smartphone. Where this platform has been used, clinicians found unexpected benefits beyond more rapid diagnosis - families say they feel more connected to the team and healthcare professionals report feeling more empathy for patients as they see the impact of seizures in the home environment.

3. COULD YOU LEND YOUR VOICE? Our voice on behalf of people with epilepsy has to be strong, it has to be direct and it has to lead to action. Our voice is strengthened by people affected by epilepsy. By lending your voice to our campaigns, you can directly influence investment in research for those living with the condition.

There are many ways to support this crucial work. Here are three examples of people affected by epilepsy getting involved. Are you willing to join them?

WRITING TO MPS Dawn tragically lost her daughter, Rachel, to epilepsy and has since been a committed campaigner, advocating for greater research. She shares her experience to help illustrate the ways people are impacted by the condition and to highlight the urgent need for government investment into such a chronically underfunded condition.

“I have contacted MPs and Health Ministers in writing and have attended their constituent surgeries to lobby for additional funding for epilepsy research.

DAWN

Although I have provided some stark ‘lack of funding’ statistics in comparison to other research, the greatest impact has come from telling my own epilepsy story by way of explaining the personal cost and the cost to the health and benefits systems.

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All those 999 calls, all those hospital admissions, all that medication, the inability to work and the need for ongoing support. All that money that could be saved by investing in research.

I then mention the personal cost. The lives lost and lives interrupted.

I always include a photograph of my late daughter Rachel in correspondence. In meetings I hand over a photograph by way of introducing the topic. It is important to emphasise that we are talking about people not just numbers and finances.

Keep fighting.”

RAISING AWARENESS Epilepsy Research UK campaigner and supporter, Peter Hunt has been involved with the charity for many years. As well as being part of #TeamERUK in the 2019 London Marathon, Peter is very active on social media, raising awareness on the impact of epilepsy.

“I believe being a vocal advocate for research into epilepsy is important because word of mouth and personal experience makes others sit up and listen and provides a greater understanding.

PETER

My daughter was diagnosed with epilepsy at the age of 17 and I knew nothing about the condition. A friend who has epilepsy shared some of his experiences with me and signposted me to ERUK. ERUK’s work and research amazed me and was a huge education for our family. I wanted to do my bit and decided to run the London Marathon in 2019 to raise funds. The experience was extremely emotional and the support from ERUK and friends was incredible. I hope that through raising awareness and taking part in the marathon, I have managed to highlight the invaluable work the charity does every day.”

VALPROATE STAKEHOLDERS Faye is an Epilepsy Research UK supporter and blogger. She became an advocate after navigating becoming a mother for the first time as someone living with epilepsy.

“I’d always considered myself quite clued up on my epilepsy... life had other ideas for me. I realised I knew little of the journey I would take as a woman having a child, and that if I felt this way then so would many others. I began blogging, which then expanded and led to me being a patient representative on many networks. The one that keeps me busiest is the Valproate Stakeholder Network.

FAYE

My passion is to give women a voice and then a choice, especially when it’s something as important and lifechanging as becoming a Mum. I found myself in a position to be the support to women that I so badly needed when I was pregnant. This then led to me wanting to speak out in other areas; I am now on the steering committee for a GOSH and UCLH study into mental health in young children with epilepsy, and more recently joined a SUDEP risk communication study.

Advocacy is the way we educate people and raise awareness. That awareness could save someone’s life and give them the information they need to make informed choices about their epilepsy and care. Awareness is power.”

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INNOVATIONS IN HEALTHCARE RESEARCH COVID-19 has caused challenges in the way people with epilepsy are able to manage their condition and how health services provide support for assessment, diagnosis and treatment. New technologies and remote consultations for routine and emergency care have been adopted at a pace never seen before. To drive the development of new innovations for people with epilepsy at this time, we put out an urgent call for research proposals in July.

We are proud to report that following this call we are funding three research projects.

£49,979

£49,726

£49,618

Professor Markus Reuber University of Sheffield

Professor Sameer Zuberi University of Glasgow

Dr Rhys Thomas Newcastle University

COMPARING INTERACTIONS IN REMOTE AND FACE-TOFACE SEIZURE CLINIC CONSULTATIONS

EVALUATION OF A NEW CLINICAL SERVICE TO ALLOW VIDEO SHARING AND REMOTE CARE FOR PEOPLE WITH EPILEPSY

EPILEPSY RISK REDUCTION AND E-EDUCATION: REDUCING HOLISTIC EPILEPSY-RISKS DURING THE COVID 19 PANDEMIC

Due to the pandemic people with epilepsy are speaking to their neurologists over the phone or the internet rather than face-to-face.

While these teleconsultations are more convenient for people with epilepsy they also present challenges. The aim of this research is to improve teleconsultations, not only for the duration of the pandemic, but in the long term.

This research project aims to find ways to utilise mobile devices so that patients and carers can share films to help speed up diagnosis and reduce unnecessary hospital visits. This study was developed following feedback from patients who wanted a secure way to share films with their healthcare professionals – see page 8.

This study seeks to reduce any risks associated with the move towards remote working by introducing Gold Standard safety tools. During the study researchers will create a series of videos aimed at specific vulnerable groups to ensure that people with epilepsy have the opportunity to hear about epilepsy safety. The study will also design new ways of communicating the risk to both patients and professionals.

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FINAL REPORTS These completed ERUK-funded projects from the last four years investigated the causes, diagnosis and treatment of epilepsy. 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. Sharing research outcomes make a valuable contribution to our growing scientific and clinical understanding of epilepsy and other neurological conditions.

IMAGING NETWORKS IN THE BRAIN TO PREDICT MEDICATION SEIZURE CONTROL

specialised MRI scans that allowed the researchers to investigate how each part of the brain is connected with other parts in people with a new diagnosis of focal epilepsy and patients with generalised epilepsy.

Dr Simon Keller University of Liverpool

Researchers found that even though patients had no abnormality reported on their MRI scans in context of their standard care, as a whole, patients with newly diagnosed focal epilepsy and generalised epilepsy had abnormal brain connections.

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

Dr Simon Keller Antiepileptic drugs (AEDs) control seizures in 60% of patients. We don’t know why it doesn’t work for some patients and we have no way of predicting which patients will respond to treatment. This study used

CARBOGEN: A MIXTURE OF CARBON DIOXIDE AND OXYGEN TO STOP SEIZURES IN CHILDREN Dr Rob Forsyth Newcastle University Epilepsy Research UK funded a pilot study by Dr Rob Forsyth to assess carbogen treatment in children. This funding helped Dr Forsyth to unlock a much bigger grant from the National Institute for Health Research (NIHR) to fund a clinical trial to see whether breathing in an acidic gas mixture can stop seizures and status epilepticus (a seizure lasting more than five minutes) in children.

These findings challenge the concept of ‘MRI-negative’ epilepsy disorders and may provide further insights into why some patients have memory problems when they are diagnosed with epilepsy. Researchers didn’t however, find a relationship between brain connectivity and the patient’s response to AEDs. Further investigation is needed to identify biological markers of patient response to medicine.

The longer a seizure goes on for, the higher the risk of brain damage and, in tragic cases, death. The normal practice in hospitals for treating this in children is to give basic drugs followed by alternative medications. If the seizure does not stop, it can lead to admission to intensive care (ICU) under full anaesthesia.

Research shows lower acidic levels in the brain make seizures more likely whereas higher acidic levels stop seizures. A way to alter brain acidity levels is by breathing in carbogen. Carbogen is an acidic gas mixture made of 95% oxygen and 5% carbon dioxide. Normally, children in hospitals with ongoing seizures are given 100% oxygen to breathe in while on other drugs. Carbon dioxide, however, is acidic. Therefore, if carbon dioxide is mixed with oxygen for breathing, it may alter the acidity in the brain just enough to stop seizures.

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RESEARCH EXPLAINED Browse our blogs and watch our webinars to hear directly from the experts about our research, presented in an accessible and engaging way.

RESEARCH BLOG Since its launch in April 2020, our Research Blog has provided a platform for experts – clinicians, scientists and people with epilepsy – to discuss and demystify the often-complex topics of research and epilepsy. There are monthly themes, such as epilepsy in childhood and promising new treatments, and those signed up to our E:Bulletin get the Research Blog Roundup delivered straight to their inbox at the end of the month.

In the most popular blog from 2020, Epilepsy Research UK Emerging Leader Fellow, Dr Gabriele Lignani, talked us through his pioneering research into gene therapy and what the latest discoveries in this area could mean for people with epilepsy.

View all our Research Blogs here: epilepsyresearch.org.uk/researchblog

“Like languages with alphabets, the language of DNA is formed using a simple ‘alphabet’ of four molecules. By ordering the molecules one after the other we are able to create ‘words’, the genes. Each gene means something, just as words do in language.”

DR GABRIELE LIGNANI EMERGING LEADER FELLOW

RESEARCH ROUNDTABLE WEBINARS When face-to-face meetings were put on hold by the pandemic, we launched a series of Research Roundtable webinars to keep our supporters up to date with research developments. The sessions feature ERUK-funded researchers, leading experts and people living with epilepsy.

The hour-long discussions include topics such as SUDEP, change makers in epilepsy, and our Innovations in Healthcare Awards Night.

View all our Research Roundtable webinars here: epilepsyresearch.org.uk/webinars

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SEIZURES HAVEN’T STOPPED, NEITHER HAVE WE... AND THANKFULLY NEITHER HAVE YOU We’ve all experienced #ALifeInterrupted over the last year. But you – our wonderful supporters – haven’t stopped. The Epilepsy Research UK community has stood together throughout and found ingenious ways to continue raising vital funds to drive and enable research. We are constantly aware that the projects we support are only possible due to your generosity. Thank you.

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WHY WE DO WHAT WE DO For people living with epilepsy, research offers hope. Hope that a new antiepileptic drug will not have debilitating side effects. The hope of living a life seizure-free. And, ultimately, the hope that one day epilepsy will be prevented.

Like the majority of charities, we have seen a 50% drop in income as a result of the pandemic. Now more than ever we need your support to help us to prevent the interruptions to life so commonplace for people affected by epilepsy.

We need to do it … … for people like my son Nicole’s journey with epilepsy began last July when her four-yearold son started having seizures. After a number of tests, in August he was diagnosed with focal epilepsy. Nicole’s life is interrupted daily now, and as a mum she is constantly on heightened alert because his seizures are not controlled.

“When considering epilepsy medications it’s incredibly hard to weigh up the possible side effects and decide what will be the lesser of the two evils.

My son was put on a treatment where one in ten experience mental health issues, anxiety and anger. As the medication took hold, his personality started to change. He became aggressive and angry. We were losing our little boy.

We chose a new drug and as the first medication left his body, so did the rage. We got our little boy back, but sadly, the seizures came back too. Side effects with the new drugs he’s been prescribed include headaches and insomnia, I’ll take that over the impact of the aggression from the old drug, but his life is still being interrupted.

Whilst we’ve had a few seizure-free weeks, when another seizure happens the emotions and uncertainty start all over again. You feel like you are back to square one.

Without research to develop better medication with fewer side effects, the impact of epilepsy won’t change for people. We need more funding: hundreds of thousands of lives depend on it.”

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WAYS TO SUPPORT:

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… for people like my sister Long-term Epilepsy Research UK supporter Joyce tragically lost her sister to SUDEP. She wants to do all she can to stop other families going through the devastation of losing a loved one to epilepsy.

“Jill was just 41 when she passed away one night after enduring several seizures. Her husband and son tried in vain to save her, as did the paramedics. I had to call my parents to tell them their daughter had died; it was singularly the worst night of my life.

Words cannot explain how we all felt in the days following. It seemed like we were looking through someone else’s window, things like that don’t happen to us. But sadly it was happening.

We are a close family. Jill and I were married to brothers, so we shared the same family and in-laws and saw each other very often. The impact on both sides of the family was one of total devastation. We have epilepsy on both sides, my sister-in-law has suffered it since she was young and my nephew was diagnosed a few years ago. The most worrying thing is his seizures seem to mimic how Jill’s were.

So this is why we are involved in raising money and awareness. We don’t want this devastation in our family again; we don’t want it to happen to anyone else’s family either.”

… for people like me Craig was diagnosed with epilepsy when he was four and has lived with the interruptions ever since. 30 years on, he has seen how our medical knowledge of epilepsy has progressed.

“All through my youth I was terrified of my condition. The more I understood, and the more epilepsy interrupted my life, the more terrified I was. Living with epilepsy isn’t easy. Memory loss, concentration issues and depression commonly come with the condition.

My biggest problem is short-term memory loss. It gets worse when I’m tired and can cause many obstacles. My concentration levels are low. All of this is on top of the fatigue I experience daily.

Finding a good career can be a challenge. I’m a Master Technician for a Volvo dealership; gaining that qualification was very hard, especially given my memory and concentration issues.

It’s difficult to get people to understand issues relating to epilepsy and because of this you can become very isolated and alone. This can then increase depression and tiredness, thus worsening the memory. A very vicious circle.”

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WEEKLY LOTTERY 8

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TOP 10 A LIFE FREE FROM EPILEPSY

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

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

SHAP

E P I LE P SY RESEARCH

NETWORK

WHY WE DO WHAT WE DO

AMRC: THE HALLMARK OF QUALITY RESEARCH

WHO TO CONTACT AT #TEAMERUK

#ALIFEINTERRUPTED

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

READ ABOUT THE RESEARCH WE FUND Browse our blogs, watch our webinars to hear directly from the experts about the research we are funding.

WATCH OUR FILMS

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

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

THINGS TO FIND ON OUR WEBSITE

They’re beautiful. Really.

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

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

50%

?

Want to share your story, fundraise, make a donation or get involved in research? Here you’ll find some of the team members you may want to speak to.

SUPPORTERS LIKE ME

Scan through the web pages to see the wonderful (and wonderfully weird!) ways people raise money for research into epilepsy.

epilepsyresearch.org.uk

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)

If your life has been interrupted by epilepsy You can shape the future of research epilepsyresearch.org.uk/ALifeInterrupted