Focus Newsletter - Spring 2023

THE ERA OF PERSONALISED MEDICINE

“The

Professor

It’s over 21 years since the first draft of the human genome sequence was published. However, it’s only now that we are beginning to see the huge promise of genomic medicine come to fruition. Over the next 10 years, personalised and precision therapies, based on an individual’s DNA sequence, will become the norm.

What does this mean for people living with epilepsy? We know that, even though epilepsy is a broad term that covers a diverse collection of disorders, a significant number are genetic. These cases can be diagnosed and classified according to the specific gene that contains changes in the genetic sequence specific to the disease. Many of the proteins produced by these genes play a critical role in brain development and signalling. These single-gene

causes of epilepsy are often severe and manifest shortly after birth or in early childhood.

Genome sequencing provides an early and definitive diagnosis for such cases; understanding the “precise” nature of the DNA sequence change offers the possibility to develop “precision” medicines in a patientspecific, “personalised” manner. This early diagnosis, combined with early therapeutic intervention, will greatly improve clinical outcomes for patients with neonatal and childhood-onset disorders, such as the severe developmental and epileptic encephalopathies (DEEs).

In the body’s cells, DNA provides the information to produce proteins via an intermediary molecule called RNA. An

exciting new class of medicines called nucleic acid therapies (NATs) selectively target atypical RNA molecules caused by gene mutations, thereby preventing the production of “bad” proteins that interfere with normal cellular processes. For example, nucleic acid therapies targeting the sodium ion channel gene SCN1A are already in clinical trials for patients with Dravet syndrome: a rare and severe form of epilepsy. Driven largely by a step change in technology, reducing the cost of DNA sequencing, enabling the generation of whole genome sequence data at population scale is within reach. The era of precision, personalised medicine is here to stay.

Professor Nick Lench

one-size-fits-all paradigm of drug development is no longer valid; the era of precision, personalised medicines is here to stay.”

Four future leaders of personalised medicine

How

industry is accelerating innovations Thank you to our fantastic fundraisers

Nick Lench is an Epilepsy Research UK Trustee and Executive Director of the Nucleic Acid Therapy Accelerator (NATA), a new Medical Research Council national research hub focused on the development of novel therapies for rare diseases. With over 35 years’ experience in genetic and genomic medicine, Professor Lench has worked in academia, industry and the NHS.

THE PROMISE OF PERSONALISED TREATMENTS FOR PEOPLE WITH EPILEPSY

Welcome to the Spring 2023 edition of Focus

For

As Professor Nick Lench explains in his cover article, personalised treatments for epilepsy are becoming a reality thanks to advances in cell and gene therapy. New technology in the lab means we can sequence genomes and gain greater, more detailed insights into an individual’s condition. We are also seeing advances in the clinic: innovations in neuroimaging and epilepsy surgery techniques can now be used to target the precise location in the brain at which a person’s seizures originate – whilst limiting side effects on language and cognition... these are enormously exciting developments, and we are determined to use our investment and influence to accelerate this to reality. Indeed, right now, past and present ERUK-funded research leaders are working on innovative gene therapy studies (pages 4-5) that are very close to translation.

It was affirming to see, as part of the UK Epilepsy Priority Setting Partnership we recently funded and led, that number five in the list of the Top Ten priorities identified by the epilepsy community was “How can targeted, personalised medicine, such as gene therapy, be used to treat and/or prevent epilepsy?”

We know that the Top Ten evidenced priorities will support increased investment in epilepsy research, but there are enormous gaps in the capacity and capability of the epilepsy research environment compared to other conditions. Research cannot flourish without the right level of investment and the right infrastructure that will attract

and retain the best researchers in epilepsy and foster an ambitious culture of collaboration.

Right now, past and present ERUKfunded research leaders are working on innovative gene therapy studies that are very close to translation.

As part of our ‘Going Further’ capacity-building strategy, the Top Ten priorities provided us with the ‘What’ but now we are shifting our attention to the ‘How’. The #Every1EndingEpilepsy programme (page 3) is bringing together the research community and patient groups to develop a plan to deliver the Top Ten priorities. Later in the year we will publish the roadmap and then we will be coming to you, as a member of our community, to help us deliver a major public awareness campaign to seek a £60 million accelerator fund to radically advance research into epilepsy. Please watch this space.

As always, we want to say thank you for being part of this powerful community, working together to achieve a life free from epilepsy... and personalised medicine could make that a reality!

Maxine Smeaton Chief Executive, Epilepsy Research UK

many people living with epilepsy, it can be difficult to accurately predict what drug, if any, will be most effective for establishing seizure control. Getting the right treatment often involves trialling various medicines in isolation and in parallel and, of course, each comes with its own side effects. This issue of Focus looks in detail at the research into and advances in personalised medicine.

#EVERY1ENDINGEPILEPSY

We have begun this work by creating a national epilepsy research collaborative – #Every1EndingEpilepsy. Together, we are developing a proposal to radically advance research into epilepsy. By scoping and costing a road map, we will demonstrate to institutional funders the ground-breaking impact investment in epilepsy research could have for people living with the condition. The Top Ten will provide the foundation for developing the research themes.

UK EPILEPSY PSP TOP TEN RESEARCH PRIORITIES

What are the causes and contributing factors of epilepsy-related deaths, including Sudden Unexpected Death in Epilepsy (SUDEP), and how can these deaths be prevented?

What underlying mechanisms cause epilepsy in children and in adults?

What impact do epilepsy, seizures and anti-seizure medication (ASMs) have on brain health - including cognition, memory, learning, behaviour and mental health?

How does epilepsy and epilepsy treatment impact neurodevelopment, and can this be managed or prevented?

How can targeted, personalised medicine, such as gene therapy, be used to treat and/or prevent epilepsy?

How can tools, devices and biological markers be used to accurately predict and prevent seizures and the onset of epilepsy?

How do hormonal changes in women throughout the lifespan (puberty, pregnancy, menopause) impact epilepsy, and how can this impact be addressed?

How can quality of life be improved for people with epilepsy, their families and carers, including those bereaved by epilepsy?

What causes drug-resistant (refractory) epilepsy, and how can it be best treated?

How can big data analysis, through artificial intelligence (AI) and machine learning, aid the diagnosis and management of epilepsy?

On 15th November 2022 the inaugural meeting of the #Every1EndingEpilepsy research strategy group took place in London. Around 30 leading clinicians and researchers, representing 12 higher education institutes from across the UK, came together to set out the vision and approach to developing this programme.

A follow-up meeting was then held in Manchester in February and a programme plan for taking this work forward is now in place. We look forward to sharing updates as the programme develops.

ADVOCACY FOR EPILEPSY RESEARCH AND PARTNERSHIP BUILDING

Epilepsy Research UK has become recognised as a key influencer in setting the epilepsy research agenda, including launching two significant capacity building programmes: the UK Epilepsy PSP and #Every1EndingEpilepsy.

To help us further develop our policy influencing work we are delighted to welcome Kathryn Stillman as Director of External Affairs. Kathryn has extensive experience working across health and research organisations in the not-for-profit and public sectors. We are also pleased to share that Caoimhe Twohig-Bennett has been promoted to Director of Research Partnerships. Alongside continuing to oversee the Epilepsy Research UK research funding programme, Caoimhe will further develop our partnership working with institutional funders and industry.

Kathryn Stillman

The publication of the UK Epilepsy PSP Top Ten research priorities marked a big moment in the development of an evidence base for research into epilepsy. Now, we must action these priorities and drive the investment so urgently needed to deliver answers to the research questions identified by the epilepsy community.

We made great progress! It’s starting to look very real. We have to shift the dial in epilepsy research.

Professor Tony Marson

ADVANCING GENETIC RESEARCH

In January, leaders in genetic therapies for epilepsy from across the UK and Europe attended our first Epilepsy Research UK Navigator Series symposium. This one-day conference, chaired by Emerging Leader Fellow Dr Gareth Morris and Scientific Advisory Committee Chair Professor Michael Cousin, was focused on genetic therapies for epilepsy. We spoke with two leading researchers who presented at the symposium about their research and its relevance to personalised medicine.

INVESTIGATING RARE GENETIC EPILEPSIES USING HUMAN BRAIN TISSUE

Dr Faye McLeod was awarded an Epilepsy Research UK Emerging Leader Fellowship in 2022 to study the gene mutations behind rare epilepsies that develop in early childhood.

Around 1 in 2,000 babies born in the UK have epilepsy due to a single error or variant in their genetic code. These genetic epilepsies cause seizures, as well as movement difficulties, mood disorders and learning disabilities. In most cases, we simply do not understand how the genetic variant causes epilepsy and how to effectively intervene; it’s likely that the process starts before birth, making it difficult to study in humans.

Overcoming these challenges, I developed a new way to study small pieces of developing human brain tissue in the laboratory. These samples are donated to a dedicated biobank called the Human Developmental Biology Resource. With ethical approval, I will use this resource to study how genetic variants alter brain development in young children, causing epilepsy.

Utilising this new approach to determine how the modification of specific genes associated with epilepsy affects developing brain cells, I will focus initially on one of the most common single-gene epilepsies: Syntaxin binding protein 1, or STXBP1. Like many other epilepsy risk genes, STXBP1 is important for accurate communication between brain cells, and it is highly active during the earliest stages of brain development. Once I identify the impact STXBP1 has on developing brain cells, I will assess the potential for reversal or mitigation using gene therapy tools.

This technique will bridge the gap from what can be learned in the lab to testing new treatments for people living with epilepsy.

The translational potential of these findings is huge. Variants in over 400 genes can cause epilepsy, with more discovered every year, making the adaptability of this new technique to investigate any gene associated with epilepsy highly advantageous. It will bridge the gap from what can be learned in the lab to testing new treatments for people living with epilepsy. I’m really excited about the potential of this method to develop new knowledge and transform the lives of people affected by epilepsy.

USING LIGHT TO STOP SEIZURES

Former Epilepsy Research UK Fellow Dr Alfredo Gonzalez-Sulser, based at the University of Edinburgh, shares his research in using light to stop seizures.

I was at the start of my PhD in 2009 when the lab gathered to discuss a paper that had recently come out in one of the premier science journals in the world, Nature. The paper discussed using light to control the activity of brain cells, with a technology called optogenetics. At the time, it sounded like science-fiction – we were hooked.

Optogenetics allows for the very precise control of brain cells, both in terms of speed, as brain cells can be stopped or started in one thousandth of a second, and specificity, as the genetic aspect of the technique enables the targeting of very specific subgroups of brain cells. Since 2009, optogenetics has revolutionised neuroscience research and over the past decade the technique has become a standard tool in labs studying brain function.

In epilepsy, researchers have demonstrated that by activating specific cells with light, seizures can be blocked in experimental models. This has increased our understanding about how seizures emerge, and which cell types generate them. New experimental models of epilepsy have been created by overstimulating cells with light. During my Fellowship, I used optogenetics to identify more effective cell types to activate, with the aim of blocking seizures in temporal lobe epilepsy, which is often intractable with current medications.

Optogenetics has coincided with other technological innovations that genetically modify specific cell populations to reduce the activity of specific brain areas to stop seizures. These gene therapies offer potential advantages versus standard treatments, in that they may be more effective and may have less adverse effects on other quality of life factors, such as memory, speech and movement.

With the capacity to control brain cells quickly, optogenetics could be even more effective than other gene therapies, as it would allow for very fast responses to seizures. It would also permit for the light stimulus to only be applied when seizures are about to occur, decreasing the likelihood of side effects from unnecessary stimulation. This coincides with advances in artificial intelligence and machine learning algorithms that are allowing researchers to better predict both when seizures will occur, and which brain cells will have a greater effect in stopping seizures.

Optogenetics may still seem like science fiction, but it could prove to be an incredibly effective therapy for untreatable seizures.

Optogenetics could be even more effective than other forms of gene therapy as it would allow for very fast responses to seizures.

PIONEERING TAILOR-MADE EPILEPSY THERAPIES WITH NUCLEIC ACIDS

Professor Peter Oliver is Head of Biology at the Nucleic Acids Therapy Accelerator (NATA), with over 25 years’ experience in cell and molecular biology. Professor Oliver was awarded funding from Epilepsy Research UK in 2018 for an Explore Pilot Study on the role of a specific epilepsy-causing gene. We spoke to Professor Oliver about the work of NATA in relation to epilepsy and personalised medicine.

Scientists are developing a major new class of medicines that have enormous potential to treat common and rare diseases. These new therapies are based on small groups of nucleic acids – large molecules that make up DNA and RNA – which provide the genetic blueprint for all living organisms. These developments are heralding an era of precision and personalised medicine where treatments are tailored to each patient’s underlying biology and health status.

Despite anti-seizure medications being used for half a century, around 30% of people with epilepsy have uncontrolled seizures that do not respond to treatment. We know that epilepsy is not just one condition, but an umbrella term encompassing countless conditions and over 40 different seizure types. Additionally, each person with epilepsy has a unique experience of the condition in terms of severity, frequency of seizures and co-occurring conditions. With this in mind, we must go beyond the ‘one size fits all’ approach to treating epilepsy and instead pioneer tailor-made therapeutic options. There is hope that nucleic acid therapies will provide such personalised treatments in the future.

Based at the Harwell Science and Innovation Campus, the Medical Research Council Nucleic Acid Therapy Accelerator, known as NATA, is leading this revolutionary approach to medicine. NATA is a unique collaboration between biologists, chemists, clinicians and industry partners, working together to build a critical mass of expertise in the UK for the benefit of patients. The focus of the research is to generate and test new therapeutic tools, initially in model systems in the laboratory. NATA is building national and international academic and industry partnerships to develop and deliver nucleic acid therapeutics across a wide range of conditions, including inflammatory disorders, cardiovascular disease and neurological disorders.

NATA also has a specific interest in epilepsy. We are proud to be partnering with Epilepsy Research UK this year on an Emerging Leader Fellowship Award. The aim is to build future expertise in this important therapeutic area by funding a two-year research project that combines nucleic acid chemistry and biology with a fundamental understanding of the underlying causes of seizures.

The world-leading research conducted by NATA aims to transform UK science, medicine, and the lives of patients affected by rare and common diseases. It is our hope that, by collaborating across the epilepsy field, we can drive innovations and accelerate the delivery of urgently needed therapies for those most affected.

Research Complex at Harwell Science & Innovation Campus

USING GENETIC DATA TO DIAGNOSE AND TREAT EPILEPSY

Dr Charles Steward is the Head of Patient and Participant Engagement at Genomics England. In this article, Dr Steward discusses his personal and professional journey in the field of genomics and how genetic data could be transformative in diagnosing, treating and preventing health conditions.

I’ve always been fascinated by biology and genomics; however, I’d never really had a particular favourite area of research in genomics. That changed in 2013, when my daughter was diagnosed with West syndrome epilepsy. I wanted to know more about why our genomes can be responsible for such disorders – clinical genomics was the place I turned to for answers.

Clinical genomics is a new approach to practicing medicine, in which information on patients’ genetic makeup is used to diagnose, treat and prevent disease. Diseases can be caused by a single DNA mutation, such as cystic fibrosis, or much larger chromosomal changes, such as Down’s syndrome.

Not all DNA sequence changes cause disease and accurately identifying a true disease-causing mutation can be extremely challenging, but it is of the utmost importance for diagnosis. It also offers opportunities for developing treatments that are targeted to specific mutations.

could allow us to correct ‘faulty’ genes with working copies. There are currently many national efforts with the intention of accelerating the clinical genomics implementation in the healthcare sector. One prominent example is Genomics England’s 100,000 Genomes Project, which provides genetic insights into disease diagnoses, including in some rare diseases where no diagnosis was previously available.

Last year, the Government announced funding to kickstart a world-leading research study to look at the effectiveness of using whole genome sequencing to identify rare genetic conditions in newborn babies. The Newborn Genomes Programme, led by Genomics England and delivered in partnership with the NHS, will gather evidence to consider whether this approach could be rolled out across England.

I’m passionate about clinical genomics, and particularly the 100,000 Genomes Project, as my daughter has been through the study. So far, we have not been able to find anything to explain her epilepsy’s genetic diagnosis, but through research, we will continue to search for answers. I’m also passionate about the importance of having the patient and participant voice at the heart of everything we do at Genomics England and making sure that everything we do is of direct benefit to them.

In fact, the ability to provide a swift genome analysis for critically ill babies with epilepsy may help guide treatment and identify the best medication. Such early interventions may prevent irreversible malfunctioning of the brain, as well as preventing many painful and invasive procedures.

Today, the potential benefit of using genetic data in the clinic is appreciated equally by scientists, healthcare professionals and politicians. In the future, gene therapy

Implementing genomics data in the clinic, in certain cases, can facilitate the provision of the right type of medication for patients, avoiding unwanted side effects and increasing the chance of success.

INTRODUCING FOUR FUTURE LEADERS OF PERSONALISED MEDICINE

To overcome the challenges faced by people diagnosed with epilepsy, we need to generate new ideas and new approaches. As one of our strategic priorities, Epilepsy Research UK is committed to supporting and capacity building the next generation of epilepsy researchers. We are proud to support early career researchers through our initiatives, such as the Emerging Leader Fellowship Award and our Doctoral Training Centres. We spoke to four future research leaders about their hopes for personalised medicine and how it can improve treatment for people living with epilepsy.

CERI PICKERING, PHD STUDENT, IMPERIAL COLLEGE LONDON

Developmental and Epileptic Encephalopathies (DEEs) represents a group of disorders characterised in part by early-onset seizures, which are often difficult to treat with existing anti-seizure medicines. Several DEEs have origins in a single gene, and yet considerable clinical variation can be observed within these disorders.

Personalised medicine presents a fantastic opportunity to progress the treatment of DEEs through strategies such as gene therapy, but to achieve this, it’s important to first understand the molecular pathways underlying the differences in how people with DEEs present. Great progress has already been made towards

this. One example is the use of stem cells derived from tissue donated by patients that has allowed researchers to study the impact of a range of specific genetic changes in DEEs, such as CDKL5 Deficiency Disorder. Moreover, scientists are now able to create a model of a brain made from donated human tissue, called a brain organoid, to increase the scope of this type of research.

I hope that building on this area of research to better understand and predict the consequences of individual genetic variants will elucidate effective therapeutic targets, and therefore harness the potential of personalised medicine.

DR JENNA CARPENTER, RESEARCH ASSOCIATE, UNIVERSITY COLLEGE LONDON

Nothing is more personal than your DNA. It is the blueprint of life; yet, sometimes mutations occur that lead to seizures, preventing life being lived to the fullest. Now, with gene editing technology, researchers have the ability to change the DNA blueprint and change your story. Gene editing represents the most powerful personalised medicine for genetic epilepsy because it is curative, not simply treating the symptoms. Gene editing gets under the hood and directly fixes the cause of seizures, representing hope for thousands living with severe epilepsy.

My research focuses on developing a gene editing therapy for Dravet syndrome, a severe epilepsy caused by mutations in the SCN1A gene. Every day I witness the therapeutic potential and versatility of gene editing technology and I hope that in decades to come, this potential will be realised in the clinic.

KATE HILLS, PHD STUDENT, UNIVERSITY OF MANCHESTER

I hope that future research into treating epilepsy syndromes, including brain tumour-related epilepsy, will focus on identifying more personalised medicine approaches. Brain tumour-related epilepsy is a complex condition that affects a large proportion of glioblastoma patients. We can see from the clinic that the use of blanket treatment regimens to treat brain tumours with chemotherapy, and co-occurring epilepsy with anti-seizure medications, have so far proved largely unsuccessful.

Using precision techniques, including tailored gene therapies to target dysfunction in the brain networks responsible for seizure generation surrounding the tumour, will allow for effective treatments that not only persist long-term but also potentially work to address both diseases at a common root cause in each individual patient. To achieve this, we need to continue collaboration and communication between basic researchers, like myself, and clinical experts to ensure we are focusing on approaches that can improve the quality of life for people with brain tumour-related epilepsy.

MR ASWIN CHARI, TRAINEE NEUROSURGEON AND PHD STUDENT, GREAT ORMOND STREET HOSPITAL

For many years, epilepsy has been considered a problem of miswiring the brain (or parts of the brain). Current surgical treatments to stop the seizures are limited to the removal of parts of the brain which we think are miswired. However, we do not always achieve this aim with around 30% of patients continuing to have seizures after surgery.

My vision for the future of personalised surgery would be to understand the miswiring of the brain network in detail, in each person using technology, such as diffusion and functional MRI. This would allow us to plan brain stimulation treatments at specific locations and with specific settings that are optimal for that person. This holds the promise of correcting the miswired brain networks, making more people seizure free following surgery and perhaps improving other aspects of epilepsy, such as learning, concentration and overall development.

Current Surgery

Removing parts of the brain is effective at stopping seizures but may not always be successful

Personalised Stimulation

Personalised brain stimulation may help shift the wiring of the brain networks towards normal, helping seizures and other problems associated with epilepsy

Normal brain network Miswired brain network in epilepsy

Surgical Resection

HOW INDUSTRY IS ACCELERATING INNOVATIONS

TECHNOLOGY TO MONITOR PEOPLE WITH EPILEPSY AT HOME

Chris Young is a director at UNEEG, a MedTech company based in Denmark, which is pioneering cognitive technologies for collecting, monitoring and analysing EEG data (brain activity) in people with epilepsy. Chris explains how this technology is helping people better manage their epilepsy, and why he is joining #TeamERUK for the London Marathon.

Our wearable technology enables clinicians to accurately identify how many seizures their patient is having. At the moment patients use a manual diary to count how many seizures they have, but we know these can be inaccurate. Our discreet EEG solution allows patients to be monitored at home for long periods so they can get on with their normal daily life. The recorded data is then automatically sent across to the clinician’s computer, so they have up-to-date, accurate information about their patient’s true seizure burden.

We’re undertaking research projects in the UK (and many other countries) to understand more about how we can use these increased insights to improve the patient’s treatment and quality of life. We also believe there are numerous benefits to the health and care system including relieving pressure on diagnostic tests and emergency departments. My aim is to ensure this amazing technology is commissioned by the NHS, so that it is available to everyone who could benefit from it.

My paternal grandmother lived with epilepsy and had regular tonic-clonic seizures. Her quality of life was really affected by this, and she required quite a lot of care and attention by my grandfather and, of course, her children. My two cousins have also experienced epileptic seizures on different occasions but are fortunate to have them controlled with anti-seizure drugs. So, there is extra motivation for me in both my work and, of course, in being part of #TeamERUK in the London Marathon.

We know that epilepsy is massively underfunded in the UK compared with other neurological conditions, so putting more focus on generating more funding and pulling resources together through the national epilepsy research collaborative #Every1EndingEpilepsy makes sense. That’s why when UNEEG medical recently won an NIHR grant to study our solution in more detail, we viewed this as not only a win for our company, but for the whole epilepsy community. If industry, clinicians, academia and patient groups continue to collaborate, then I believe we can see real progress in the coming years.

UNEEG medical’s groundbreaking new EEG technology for epilepsy management

An implant with electrodes is placed under the skin to record EEG data

The patient wears a small, discreet recorder day and night for up to 15 months

EEG data is automatically sent to the doctor

The doctor can see the brain activity of the patient and look for seizures

raise awareness and some money, it will be worth the pain!

The additional insights provided can help the doctor and the patient manage the epilepsy by understanding the seizure activity seen in the brainwaves

This extra knowledge has the potential to empower the patient and improve doctor-patient dialogue.

My son once challenged me to run a marathon - so running for #TeamERUK was a clear choice! It’s given me a good focus to keeping fit and healthy. I’ve personally seen the impact of epilepsy and the amazing work undertaken each day to help those affected. If I can

JOINT AWARD TO INVESTIGATE DATA-DRIVEN RESEARCH

Research using big data can help uncover important insights in epilepsy – insights which bring personalised medicine closer to the clinic. Professor Mark Richardson at King’s College London is the first to be awarded through our recent strategic alliance with Angelini Pharma to accelerate innovations in refractory epilepsy through patient data. The award will fund research using artificial intelligence (AI) and large-scale NHS clinical data records to better understand refractory epilepsy. Refractory epilepsy, or uncontrolled epilepsy, affects one in three people living with the condition, meaning their seizures persist despite treatment. Risk factors for refractory epilepsy remain largely unidentified because only small numbers of patients have been studied, and the information used to identify the factors is limited.

Professor Richardson’s team at King’s College London will access information available through electronic health records (EHRs) held in NHS hospitals for patients with epilepsy. The team has developed a system using a state-of-the-art AI tool to access EHR data held in different formats and automatically annotate it in rich detail. These annotations provide standardised, detailed information about each individual patient.

The group has also developed AI tools to predict outcomes that can be used to identify risk factors for refractory epilepsy for up to 30,000 people across three London hospitals. This study will identify new information about the risk factors for developing refractory epilepsy, which will ultimately enable researchers to develop new strategies to prevent it. Through analysing the data of thousands of people, this study will directly benefit individuals with epilepsy.

Professor Mark Richardson said: “Over the last decade, NHS hospitals have started to adapt electronic systems for collecting medical records. As a result, there is detailed information about health status related to tens of thousands of people with epilepsy.

“We have developed systems to extract highly detailed information from electronic health records, while maintaining the confidentiality and privacy of the information. We can analyse this information using artificial intelligence to track the course of epilepsy in thousands of people and improve attempts to identify the factors that predict refractory epilepsy.”

Driving forward Big Data research

Our ambition for this strategic alliance is to drive forward Big Data research and foster collaborations between people from different research fields, as well as between scientists and people affected by epilepsy. By bringing together those affected by epilepsy, innovators working in new technologies and researchers, we can finally answer questions we’ve been unable to tackle for decades.

THANK YOU TO OUR FANTASTIC FUNDRAISERS

Our work is the direct result of your amazing fundraising efforts. Thank you for being part of this powerful community, working together to STOP epilepsy interrupting lives.

Remember baby Archer? Here’s an update on his progress...

Archer underwent a left hemispherotomy in September 2022, and we’re thrilled to share that he has been seizure-free and thriving ever since. Procedures like this are only possible due to research and the generosity of our wonderful supporters. Thank you.

THE WOMEN OF SCOTLAND LUNCH DEDICATE THIS YEAR TO EPILEPSY RESEARCH UK

Epilepsy Research UK are proud to be the benefiting charity of the 2023 Women of Scotland Lunch, which will be held in Glasgow on 21st April. The annual lunch is set up to celebrate women who have made a difference in their community, to meet new and old friends, hear from inspirational speakers and fundraise for charity.

This year’s theme ‘Invisible Challenge’ doesn’t come much bigger than epilepsy, and we have three excellent speakers. Broadcaster and columnist Jane Garvey presented BBC Radio 4’s Woman’s Hour for 13 years until the end of 2020, and now co-presents the Times Radio afternoon show. She will be joined by the world record holding ultra-cyclist Katharine Ford, and our Epilepsy Research UK President, Professor Helen Cross OBE.

Since the age of four, Katharine has lived with epilepsy and underwent major transformative brain surgery aged 14. She has experienced severe epilepsy, seizure re-emergence and has had to make major changes to her life and career due to her condition. But epilepsy has not defined Katharine, and among her many other sporting achievements, she has gone on to become a four-time world recording holding ultra-cyclist.

Funds raised from this year’s lunch will support the University of Edinburgh’s vital research investigating neurodevelopment in childhood-onset epilepsies and in children of women with epilepsy.

LEAVE A LASTING LEGACY BY MAKING YOUR MARK ON EPILEPSY RESEARCH

Gifts in Wills currently make up roughly half of our annual income and play a vital role in securing the future of research into epilepsy.

By choosing to leave a gift in your Will to Epilepsy Research UK, however large or small, you are leaving a lasting legacy that helps us achieve a life free from epilepsy for the next generation.

Download our free guide from our website or use this QR code for more details.

PROFESSOR HELEN CROSS OBE

JANE GARVEY

KATHARINE FORD

OUR TOP #TEAMERUK EVENTS THIS YEAR

EDINBURGH MARATHON FESTIVAL

From 5ks to a full marathon, the Edinburgh Marathon Festival has a distance for every type of runner. Will we see you there?

SKYDIVE – JUMP FOR RESEARCH

Do you have what it takes to jump from 10,000 ft for Epilepsy Research UK?

RIDELONDONESSEX 100

Ride 100 miles on trafficfree roads through London and Essex, crossing the finish line on Tower Bridge!

SUNDAY 10 SEPT

GREAT NORTH RUN

The biggest half marathon in the world – and you could be running for vital research into epilepsy!

OVERSEAS CHALLENGES

From treks in Costa Rica, cycle challenges in the Italian Lakes to Arctic Adventures, we have plenty of thrilling overseas opportunities in 2023!

VARIOUS DATES

THAMES PATH CHALLENGE

Run, jog or walk; 25km, 50km or 100km – the choice is yours!

VARIOUS DATES

INFLATABLE 5K SERIES

With various locations across the UK, the world’s largest and best fun run will no doubt be coming to a town near you!

DUBLIN MARATHON

Explore the heart of Dublin and take in the capital’s historic landmarks at the Irish Life Dublin Marathon.

PLAY THE EPILEPSY RESEARCH UK WEEKLY LOTTERY

31 8

WEEKLY LOTTERY 4 22

SUNDAY 29 OCT

From as little as £1 a week, you can join our weekly lottery to be in with a chance of winning a £25,000 jackpot, all whilst raising money to fund life changing, life saving research. You’ll be given a six-digit lottery number for each £1 entry, the more entries you have, the greater your chance of winning!

Visit epilepsyresearch.org.uk/lottery to find out more.

PURPLE POUNDS for #PurpleDay

You’ve probably heard of the silver pound and the pink pound… Well, this year we’re all about the PURPLE POUND!

We know the cost of research is high, but so are the stakes. Through funding research, together, we can STOP epilepsy interrupting lives. If you can, please donate your PURPLE POUNDS this Purple Day to support pioneering research into epilepsy.

DONATE WITH THE ENCLOSED FORM

LOOKING FOR OTHER WAYS T0 FUNDRAISE? LOOK NO FURTHER...

LOOK FUR-MILIAR...? #PurrrpleDayPets is back!

-Photograph your pet in purple

-Post on social media with #PurrpleDayPets

-Invite friends to join in and make a donation

FACEBOOK FUNDRAISER

Set up a Purple Day Fundraiser on Facebook and they will cover all the fees, meaning Epilepsy Research UK gets 100% of the funds you raise.

DRESS IN PURPLE!

Whether it’s your favourite TV character, or a purple suit or jumper - dress up for the day, get sponspored and paint your town purple!

PURPLE DAY BAKE OFF

Get the gang together for a purple themed GBBO contest! Be sure to stock up on blackberrries and beetroots - yum!