Photo courtesy of Dr Oliver Davis, University of Cambridge
WELCOME TO THE INSTITUTE MEMO
A message from our Chief Executive, Rosemarie Pardington
Welcome to The Institute Memo –the Epilepsy Research Institute’s newsletter highlighting updates on our work, groundbreaking research and the latest news. We plan to share The Institute Memo bi-annually, but to make sure you’realways up-to-date with the latest news, please sign up to our e-newsletter here: epilepsyinstitute.org.uk/newsletter-sign-up/
In this newsletter, we’re sharing more about the Institute’s mission and how, through our research strategy and six key themes, we will radically advance research into epilepsy. One of our theme co-leads, Dr James Mitchell, shares his insights on the Institute’s Capacity Building theme, as well as on his own patient-centred work and his hopes for future research.
You’ll also find the latest Institute news including funding announcements, recent events and fundraising updates. In this edition, we’re shining a spotlight on our 2024
research awards, which saw a record investment of over £2million - our biggest-ever annual investment to date which was made possible thanks to you - our supporters.
You’ll also hear from Nic, a member of the Epilepsy Research Institute’s Shape Network - the UK’s largest group of research-interested people affected by epilepsy with now over 480 members. Nic shares how much being involved in research means to her.
And finally, you can find information on how you can get involved and support our vital work.
This newsletter showcases just a few examples of our activities over the last few months, and I hope you agree that we’re already making significant progress on our journey to radically advance research into epilepsy. We hope you enjoy reading the newsletter and as ever, thank you so much for your continued support.
RADICALLY ADVANCING RESEARCH INTO EPILEPSY
The Epilepsy Research Institute serves as the central hub for the epilepsy research community. Our mission is to radically advance research into epilepsy for the 1 in 100 people living with the condition.
The Institute aims to increase understanding of the causes and mechanisms of the epilepsies and associated conditions to accelerate research innovations in prevention and treatment. To strengthen the epilepsy research ecosystem we are driving strategic investments by developing partnerships. These collaborations are across academia, the NHS, industry, funders, patient groups, people with epilepsy and their support networks. Crucially, we actively involve people affected by epilepsy to shape how research is designed and delivered.
Our research strategy
Based on the agreed research priorities of the epilepsy community, our strategy is underpinned by six key themes:
Neurodevelopment
Advanced Therapeutics & Disease
Modification
Mortality, Morbidity & Risk
Reproduction & Hormones
Capacity Building
Enabling Technologies
Each theme is led by three co-leads, who are supported by a task force comprising pre-eminent scientists and clinicians, future research leaders, industry partners and members of the Shape Network. The theme co-leads and task force are developing the Institute’s comprehensive research strategy into these six areas. Alongside this work, the Institute is building capacity in the epilepsy research ecosystem and driving a programme to secure large-scale investment.
SPOTLIGHT ON...
Dr James W Mitchell
Dr James W Mitchell is a co-lead for the Institute’s Capacity Building research theme. He also works as an neurology registrar at The Walton Centre in Liverpool and is a recent Association of British Neurologists and Guarantors of Brain Research Fellow. We spoke to Dr Mitchell about his patient-centred work, the capacity building research theme and his hopes for epilepsy research.
In a nutshell, tell us about your research
My research focuses on how we measure outcomes and the impact of treatments for people with epilepsy. Outcomes can be defined as the number of seizures or the severity of seizures someone experiences, the impact of seizures on work, school, social and family life, symptoms of low mood and anxiety, amongst many others.
Historically, the outcomes that are measured when deciding if treatments are effective and safe have not been chosen considering the views of people with epilepsy. In
addition, different researchers have measured different outcomes, or the same outcome in different ways within their studies. This means that previously measured outcomes may not be meaningful to people with epilepsy, and it has sometimes been a challenge to compare research findings and draw conclusions across multiple studies.
What impact do you hope your research will have?
We have already reached a consensus from key stakeholders on better defining outcomes and what we should be measuring. The challenge is now influencing change and
ensuring that the outcomes defined as ‘critical to measure’ are captured and reported in future research assessing new and existing treatments. These changes are not going to happen overnight, but our long-term goals are to ensure treatments are informed by measuring what matters to people living with epilepsy, and make it easier to combine and compare research from different researchers across settings. This harmonised approach should reduce research waste, and in some instances mean that we can determine the effectiveness of treatments for epilepsy more quickly.
What do you hope the Institute’s Capacity Building research theme will achieve?
We are at an exciting point for epilepsy research in the UK, and internationally. The Epilepsy Research Institute is starting to
break down historical barriers for collaborative working. We are building an infrastructure that supports research crossing institutions, themes, and disciplines to rapidly advance research in the key areas identified in the UK Epilepsy Priority Setting Partnership (PSP). Central to the Institute’s mission is ensuring we build capacity for the future by strengthening the network of epilepsy researchers and supporting research partnerships.
Crucially, we must ensure that early career researchers are attracted to the field of epilepsy, effectively mentored and supported through their career progression so that they are retained and keep working in epilepsy research. The Capacity Building research theme have a number of events planned for this year to continue with this exciting work.
READ OUR LATEST FEATURES ON OUR WEBSITE
You can find Dr Mitchell’s full article on our website, along with other informative features from researchers and experts in the field of epilepsy: epilepsy-institute.org.uk/eri/research/features/
THE LATEST EPILEPSY AND INSTITUTE NEWS
Epilepsy Research Institute announces record £2 million research investment at Reception during National Epilepsy Week
The Institute’s biggest annual investment to date of over £2 million will fund 14 new studies, involving 58 researchers and collaborators. We were thrilled to share the annoncement at the ‘Promise of Research’ Reception, jointly hosted with Young Epilepsy. The event showcased the promise of epilepsy research, with informative talks from leading researchers, clinicians and people affected by the condition. Read more about our 2024 research awards on the next page.
The UK Government Medical Research Charities Early Career Researcher Fund awards £1.47 million to the Epilepsy Research Institute
The Early Career Researcher fund was launched in 2022 in recognition of the impact of Covid-19 and the ongoing pressures faced by the charity sector since the pandemic. This year, the Government committed £45m to support charity-funded early career researchers, as outlined by Chancellor Jeremy Hunt in the spring budget. The Institute was delighted to receive £1.47 million of this fund in recognition of its work.
The Institute hosts Emerging Leaders Symposium
The event was attended by nearly 100 early career researchers and their supervisors. The programme featured informative talks from established and emerging leaders, who shared their experiences and useful advice for those beginning a career in research, as well as early career poster and platform presentations.
Research roundtable held with the Epilepsy Research Institute and Dementia Research Institute
Epilepsy and dementia share a bi-directional relationship, meaning that people with dementia have an increased risk of epilepsy, and people with epilepsy may be more likely to develop dementia. The event brought together 20 leading researchers working in the fields of epilepsy and dementia to identify opportunities to advance much-needed collaborative research in this area.
Over 100 researchers complete survey to assess capacity in epilepsy research
Patient Safety Commissioner publishes sodium valproate redress recommendations
These recommendations have come as a result of research into sodium valproate, funded in part by the Institute, and the tireless campaigning of families affected. This report made key recommendations for research and recognised the role of the Institute in calling for greater investment.
The survey, carried out as part of the Institute’s Capacity Building research theme, aims to clarify the current capacity in epilepsy research to ensure we start from an accurate baseline. It also explored the facilitators and barriers to engaging with and undertaking research. We hope to share the results in our next newsletter.
#TeamScience at the London Marathon!
12 wonderful runners joined the 50,000+ participants on behalf of the Institute as they took on the challenge of a lifetime to help fund and drive forward research into epilepsy. The team collectively raised over £34,000 - an incredible contribution to vital research!
OUR 2024 RESEARCH AWARDS
DOCTORAL
TRAINING CENTRE
Epilepsy Research Institute North West Doctoral Training Centre - University of Liverpool and University of Manchester. Exploring cognition in people with epilepsy and their offspring.
Led by Dr Rebecca Bromley and Professor Simon Keller, the programme will train seven PhD students creating the epilepsy researchers of the future.
RESEARCH TRAINING FELLOWSHIP
MRC Clinical Research Training Fellowship
Dr Oliver Davis, University of Cambridge. Investigating if DNA misfolding can cause neurodevelopmental disorders, such as epilepsy, to inform new targeted treatments.
EMERGING LEADER FELLOWSHIPS
Emerging Leader Fellowship
Dr Gashirai Mbizvo, University of Liverpool. Investigating and optimising the safety of discontinuing valproate in young men and women with epilepsy.
Emerging Leader FellowshipMr Davide Giampiccolo, University College London (UCL). Developing a new surgical technique focussing on disconnecting networks, aiming to improve rates of seizure freedom.
Emerging Leader Fellowship
Dr Nicolas Marichal Negrin, King’s College
London. Investigating converting brain support cells into neurons capable of suppressing seizure activity.
Epilepsy Research Institute & Dravet Syndrome
UK Emerging Leader Fellowship
Dr Jenna Carpenter, UCL. Developing a next generation gene therapy for epilepsy in Dravet Syndrome, aiming to make seizure freedom a reality.
Emerging Leader Fellowship
Dr Ilaria Belluomo, Imperial College
London. Developing a breath test for the diagnosis of epilepsy and prediction of seizures.
Epilepsy Research Institute & Dravet Syndrome
UK Emerging Leader Fellowship
Dr Lisa Clayton, UCL. Understanding autonomic dysfunction in Dravet syndrome, aiming to improve quality of life.
LIFE WITH EPILEPSY -
NIC’S STORY
Nic lives with epilepsy and has been a member of the Epilepsy Research Institute Shape Network for several years. Here, Nic shares how much being involved in research means to her.
My journey with epilepsy began with a sudden absence seizure. I wasn’t familiar with epilepsy at the time and knew nothing about the different types of seizures. The initial uncertainty of receiving a diagnosis and the challenges of trying to work around seizures brought on anxiety, stress and feelings of isolation.
My seizures were unpredictable and came without warning. This meant normal tasks such as the school run and commute to work had to be carefully planned to minimise the risk of physical injuries and accidents when the seizures did happen. Social engagements also had to be more considered. Understandably, I was no longer able to drive, but this meant we lost further elements of freedom.
I discovered the Epilepsy Research Institute (then Epilepsy Research UK) and found their resources to be incredibly helpful and accurate. Through their newsletter,
I discovered the Shape Network and its commitment to involving people affected by epilepsy in research. I was certain that my personal knowledge and experience would further support this crucial research and could help improve future epilepsy treatments. So, I joined the Shape Network and have now been an active member for more than two years.
I have found being involved in research invaluable, as it has enabled me to play a direct role in advancing understanding of the condition and informing future research. You’re able to learn about the latest information and treatments while contributing first-hand to the collective knowledge in order to support others and their families - I would highly recommend joining the network to others.
Read Nic’s full story here: epilepsyinstitute.org.uk/life-with-epilepsynics-story
HOW CAN I GET INVOLVED?
By supporting our vital research, you are joining a powerful community working together to achieve a life free from epilepsy.
Join the Shape Network
Research needs people affected by epilepsy to get involved, which is why we built the Shape Network - the SHAP NETWORK UK’s largest group of research-interested people affected by epilepsy. Through the network, we share opportunities for people with epilepsy, their family members and carers to get involved in all aspects of research. Visit epilepsy-institute.org.uk/get-involved-in-research/ to find out more.
Take on a Challenge Event
What’s your #TeamScience challenge? Whatever you decide we’ve got you covered. With every step, jump or pedal, you’ll be creating unforgettable memories, and making a difference for the 1 in 100 people living with epilepsy. Visit epilepsy-institute.org. uk/supporters or email challenges@ epilepsy-institute.org.uk to find out what’s on in your area.
Join our Cheer Squad! Want to join #TeamScience without breaking a sweat? Join our formidable cheer squad to help give our wonderful supporters an all important boost on event days! We are currently recruiting cheer squad members for the Great North Run on 8th September - email challenges@ epilepsy-institute.org.uk to find out more.
Your support could fund research into ground-breaking treatments such as a ‘genetic switch’ to activate gene therapy, preventing seizures and minimising side effects. To make a donation, please return the enclosed donation form or visit donate.epilepsyresearch.org.uk/donate
