Largest study fnds little evidence of male fertility risks from valproate
Meet the acclaimed flmmaker bringing epilepsy to the big screen
Gracie’s marathon for change in memory of sister
Dr Gashirai Mbizvo Emerging Leader Fellow
724 SHAPE NETWORK MEMBERS
WELCOME TO THE INSTITUTE MEMO
THE YEAR IN NUMBERS
A message from our Chief Executive, Rosemarie Pardington
Since our launch in October 2023, the Epilepsy Research Institute has been driving forward our mission to radically accelerate research to better understand and treat epilepsy. In the months following our last ‘Memo’ in winter 2024, we’ve been busy building on this momentum – from new research initiatives to inspiring community events. I’m delighted to share with you the latest updates, stories and innovations in this autumn edition of The Institute Memo.
are continuing to push boundaries.
£1.7m
HUB MEMBERS 823 MILLION RESEARCH INVESTMENT IN 2025 GRANT ROUND
£5.41 AVERAGE FOLLOW ON FUNDING FOR EVERY £1 INVESTED IN RESEARCH
Our 2025–26 Grant Round is now open, ofering fresh opportunities to fund the most promising science. We are also inviting early career researchers to observe our Scientifc Advisory Committee in action, providing an invaluable chance to see how funding decisions are made and to inspire the next generation of leaders in epilepsy research.
Innovation remains at the heart of everything we do. From new biosensor technology funded through the James Lewis Foundation, to our partnership with the MRC Centre of Research Excellence advancing device-based treatments, we
We are enhancing collaboration by connecting scientists across disciplines through new research groups and our Shape Network of research-interested people afected by epilepsy. This group has played a crucial role in shaping research, ofering insights that have infuenced a variety of projects –including the design of a £2.7m clinical trial on vagus nerve stimulation.
ATTENDEES AT OUR INAUGURAL CONFERENCE 178
We hope you enjoy this newsletter and feel inspired by the progress we’re making together. As always, please do get in touch if you have any questions or want to get involved in any of our research activities. We are stronger together.
Thank you.
Rosemarie Pardington Chief Executive Epilepsy Research Institute
THE YEAR IN NUMBERS
WELCOME TO THE INSTITUTE MEMO A message from our Chief Executive, Rosemarie Pardington
£1.7m
724 SHAPE NETWORK MEMBERS
823 MILLION RESEARCH INVESTMENT IN 2025 GRANT ROUND
We are enhancing collaboration by connecting scientists across disciplines through new research groups and our Shape Network of research-interested people afected by epilepsy. This group has played a crucial role in shaping research, ofering insights that have infuenced a variety of projects –including the design of a £2.7m clinical trial on vagus nerve stimulation.
178
ATTENDEES AT OUR INAUGURAL CONFERENCE
We hope you enjoy this newsletter and feel inspired by the progress we’re making together. As always, please do get in touch if you have any questions or want to get involved in any of our research activities. We are stronger together.
Thank you.
Rosemarie Pardington Chief Executive Epilepsy Research Institute
HUB MEMBERS
Since our launch in October 2023, the Epilepsy Research Institute has been driving forward our mission to radically accelerate research to better understand and treat epilepsy. In the months following our last ‘Memo’ in winter 2024, we’ve been busy building on this momentum – from new research initiatives to inspiring community events. I’m delighted to share with you the latest updates, stories and innovations in this autumn edition of The Institute Memo.
£5.41 AVERAGE FOLLOW ON FUNDING FOR EVERY £1 INVESTED IN RESEARCH
Our 2025–26 Grant Round is now open, ofering fresh opportunities to fund the most promising science. We are also inviting early career researchers to observe our Scientifc Advisory Committee in action, providing an invaluable chance to see how funding decisions are made and to inspire the next generation of leaders in epilepsy research.
Innovation remains at the heart of everything we do. From new biosensor technology funded through the James Lewis Foundation, to our partnership with the MRC Centre of Research Excellence advancing device-based treatments, we are continuing to push boundaries.
INSTITUTE INVESTS OVER £1.7 MILLION IN
ENDEAVOUR PROJECT GRANTS
GROUNDBREAKING RESEARCH FOR
2025
heseT projects will address some of epilepsy’s most urgent and complex questions – from understanding its underlying causes to developing smarter, more efective treatments.
Thanks to the continued generosity and commitment of our supporters, in May the Epilepsy Research Institute was proud to announce a major investment of over £1.7 million in eight cutting-edge research projects for 2025. These bold initiatives are already underway, with the goal of driving real change in the lives of people afected by epilepsy.
FELLOWSHIPS
Professor Andrew Trevelyan will study how seizures stop naturally to uncover safer ways to halt them and reduce SUDEP risk.
Emerging leader fellowships support rising stars in epilepsy research to develop transformative research programmes.
Emerging Leader Fellowship
Professor Sameer Zuberi will test a chest-worn sensor to detect breathing changes during seizures, paving the way for a home alarm to prevent SUDEP.
With these new awards, the Institute is now supporting circa 40 active research projects across 18 institutions, involving over 100 researchers and collaborators in the UK and internationally.
Dr Marisol Sampedro Castañeda
Dr Craig Heath will investigate whether sodium valproate in men may afect their children’s health, to guide safer treatment choices.
Congratulations to our 2025 research awardees and thank you to our supporters and partners. Your commitment is helping us radically advance research into epilepsy.
Dr Castañeda’s Emerging Leader Fellowship will investigate how rare genetic mutations afect calcium fow in brain cells, a key factor in severe, hard-totreat childhood epilepsies. This research could guide treatment decisions, pave the way for targeted treatments that prevent seizures before they start and support new uses for existing epilepsy drugs.
Dr Edmond Shu Lim Ho will develop an AI tool to spot infantile spasms from home videos, speeding diagnosis and improving outcomes.
Emerging
Leader Fellowship
Dr Rob Graham
Through his Fellowship, Dr Graham will study brain chemistry to identify patterns that increase seizure risk. This project aims to improve our ability to anticipate and eventually predict seizures – a breakthrough with potentially life-changing implications.
Entry Fellowship
Francesca Chaloner
Dr Gareth Morris will create a genetic therapy to target seizure-blocking pathways, aiming for long-lasting treatment for drug-resistant epilepsy.
In the Institute’s inaugural Entry Fellowship, Dr Chaloner will explore a pioneering, non-invasive brain stimulation technique to reduce seizures in people with epilepsy and Alzheimer’s. Her research holds promise for a safe and accessible dual-purpose treatment.
Find more information on our 2025 research awards on our website
ENDEAVOUR PROJECT GRANTS
INSTITUTE INVESTS OVER £1.7 MILLION IN GROUNDBREAKING RESEARCH FOR 2025
These projects will address some of epilepsy’s most urgent and complex questions – from understanding its underlying causes to developing smarter, more efective treatments.
FELLOWSHIPS
mergingE leader fellowships support rising stars in epilepsy research to develop transformative research programmes.
Professor Andrew Trevelyan will study how seizures stop naturally to uncover safer ways to halt them and reduce SUDEP risk.
Emerging Leader Fellowship
Dr Marisol Sampedro Castañeda
Thanks to the continued generosity and commitment of our supporters, in May the Epilepsy Research Institute was proud to announce a major investment of over £1.7 million in eight cutting-edge research projects for 2025. These bold initiatives are already underway, with the goal of driving real change in the lives of people afected by epilepsy.
Professor Sameer Zuberi will test a chest-worn sensor to detect breathing changes during seizures, paving the way for a home alarm to prevent SUDEP.
Dr Castañeda’s Emerging Leader Fellowship will investigate how rare genetic mutations afect calcium fow in brain cells, a key factor in severe, hard-totreat childhood epilepsies. This research could guide treatment decisions, pave the way for targeted treatments that prevent seizures before they start and support new uses for existing epilepsy drugs.
Dr Craig Heath will investigate whether sodium valproate in men may afect their children’s health, to guide safer treatment choices.
With these new awards, the Institute is now supporting circa 40 active research projects across 18 ,institutions involving over 100 researchers and collaborators in the UK and internationally.
Congratulations to our 2025 research awardees and thank you to our supporters and partners. Your commitment is helping us radically advance research into epilepsy.
Dr Edmond Shu Lim Ho will develop an AI tool to spot infantile spasms from home videos, speeding diagnosis and improving outcomes.
Entry Fellowship
Francesca Chaloner
In the Institute’s inaugural Entry Fellowship, Dr Chaloner will explore a pioneering, non-invasive brain stimulation technique to reduce seizures in people with epilepsy and Alzheimer’s. Her research holds promise for a safe and accessible dual-purpose treatment.
Dr Gareth Morris will create a genetic therapy to target seizure-blocking pathways, aiming for long-lasting treatment for drug-resistant epilepsy.
Emerging Leader Fellowship
Dr Rob Graham
Find more information on our 2025 research awards on our website
Through his Fellowship, Dr Graham will study brain chemistry to identify patterns that increase seizure risk. This project aims to improve our ability to anticipate and eventually predict seizures – a breakthrough with potentially life-changing implications.
PUSH YOUR LIMITS FOR GROUNDBREAKING RESEARCH
GRACIE’S MARATHON FOR CHANGE IN MEMORY OF SISTER CLARA
Whether it’s pedalling further than you’d imagined possible, taking on an iconic marathon, or taking the ultimate leap with a skydive, every mile and every jump will raise vital funds for research. Sign up at the QR code below.
Four days before she died, I created a JustGiving page with Clara and our sister Amy. Clara had been told she would be prescribed a drug that had a 90% chance of making her feel awful and a 10% chance of helping. I wanted to raise money to change those statistics.
Skydives
Multiple dates and locations
Feel the rush of freefall and the joy of making a diference. Leap from 10,000 feet and raise lifechanging funds for epilepsy research on the way down!
Channelling my grief towards a goal helped massively. I was raising money in memory of Clara, but also for people going through similar situations. Knowing you are making a diference is a special feeling and one that will not leave you.
Windsor Lions make generous donation in memory of Beatrice
Thank you to Gracie and everyone who so generously donate. Every amount raised, whether big or small, makes a real diference in driving forward vital research.
The Institute was honoured to attend the Windsor Lions Presentation Evening in January to receive a generous donation in memory of club president Martin Tocher’s niece, Beatrice Matthews-Kilhams, who died of epilepsy in 2019, aged 18.
Martin said, “The Windsor Lions are proud to be donating money to the Epilepsy Research Institute to support their groundbreaking research that could lead to better treatments, greater understanding, and ultimately, a cure.” Beatrice’s mum
In April, Gracie raised a staggering £78,000 for the Institute running the Madrid Marathon in memory of her sister Clara, who tragically died suddenly of SUDEP while Gracie was training for the event. Gracie tells us her story.
Whether it’s pedalling further than you’d imagined possible, taking on an iconic marathon, or that trek you’ve always wanted to conquer, all eforts raise vital funds for research.
When asked about my sister, her epilepsy never popped into my mind. She was adventurous, brave, kind and one of the most generous people I will ever know. She was never defned by her health.
All Challenge Events
Multiple dates and locations
I was four when Clara was diagnosed. At frst, I treated her seizures like a very bad dream, but then she was having around 50 a day aged 12 and was hospitalised, which was very scary. Even though I was young, I recognised just how miraculous her recovery was after immunoglobulin treatment.
Alex added, “To know the research we are supporting could be aiding other patients and their families… is so very important to us.”
When she got older, Clara shared her experience of living with epilepsy so that others didn’t feel alone or ashamed. She spoke openly about her experiences, worries and constant battle with the medication she was taking.
We are hugely grateful to the Windsor Lions, and all who have generously donated to the fund, for enabling us to continue vital epilepsy research in Beatrice’s memory.
GRACIE’S MARATHON FOR CHANGE IN MEMORY OF SISTER CLARA
In April, Gracie raised a staggering £78,000 for the Institute running the Madrid Marathon in memory of her sister Clara, who tragically died suddenly of SUDEP while Gracie was training for the event. Gracie tells us her story.
When asked about my sister, her epilepsy never popped into my mind. She was adventurous, brave, kind and one of the most generous people I will ever know. She was never defned by her health.
I was four when Clara was diagnosed. At frst, I treated her seizures like a very bad dream, but then she was having around 50 a day aged 12 and was hospitalised, which was very scary. Even though I was young, I recognised just how miraculous her recovery was after immunoglobulin treatment.
When she got older, Clara shared her experience of living with epilepsy so that others didn’t feel alone or ashamed. She spoke openly about her experiences, worries and constant battle with the medication she was taking.
Four days before she died, I created a JustGiving page with Clara and our sister Amy. Clara had been told she would be prescribed a drug that had a 90% chance of making her feel awful and a 10% chance of helping. I wanted to raise money to change those statistics.
Channelling my grief towards a goal helped massively. I was raising money in memory of Clara, but also for people going through similar situations. Knowing you are making a diference is a special feeling and one that will not leave you.
Thank you to Gracie and everyone who so generously donate. Every amount raised, whether big or small, makes a real diference in driving forward vital research.
LARGEST STUDY FINDS LITTLE EVIDENCE
OF MALE FERTILITY RISKS FROM VALPROATE
A major international study led by the University of Liverpool, and funded by the Epilepsy Research Institute, has found little evidence that sodium valproate signifcantly afects male fertility.
INSTITUTE CONFERENCE UNITES GLOBAL EXPERTS TO DRIVE CHANGE IN
EPILEPSY RESEARCH
EPILEPSY RESEARCH
sperm counts, or testicular shrinkage between men who did and did not take valproate.
We look forward to repeating the event in two years’ time.
The Epilepsy Research Institute would like to thank our generous sponsors for this event:
Valproate is an efective treatment for epilepsy and bipolar disorder, used by millions of people worldwide. However, in the UK and elsewhere, prescribing to men is restricted due to concerns about possible fertility risks. These concerns were based mainly on animal studies at much higher doses than patients receive, and on small, inconsistent human studies.
ILAE British Branch, UNEEG Medical, UCB, Epilepsy Action, Neuronostics, Matthew’s Friends and Cardonet.
The new research, published in Nature Communications, analysed health records from nearly 92,000 men with epilepsy or bipolar disorder who had taken valproate, compared with over 536,000 men who had not. Researchers carefully matched the two groups by age, health, lifestyle, and other treatments to ensure fair comparison. They found only minimal diferences (less than 1%) in infertility diagnoses,
Lead researcher Dr Gashirai Mbizvo explained: “In the largest study of its kind, we found little evidence that valproate impairs male fertility… These results are signifcant because fear of fertility side efects can lead men to discontinue the medication, risking uncontrolled seizures, mental health deterioration, hospitalisation, or death… Epilepsy, in and of itself, can afect fertility rates, which are two-thirds lower in men with epilepsy than without.”
The inaugural Epilepsy Research Institute Conference took place during National Epilepsy Week 2025, bringing together researchers, clinicians, early-career scientists and those with lived experience of epilepsy for two days of groundbreaking collaboration in Manchester. The event opened with welcomes from Professor Matthew Walker and Rosemarie Pardington, followed by a keynote from Professor Ivan Soltesz (Stanford) on neuronal microcircuits and new pathways for treatment.
The team stressed that further research is needed, especially on whether valproate might afect future children. Anyone concerned about treatment should always speak with their healthcare professional.
The conference ofered a rich programme, bringing together the epilepsy research community to share innovation, progress and ideas.
Across inspiring talks, discussions and flms, delegates explored the Institute’s strategic themes and looked ahead to future opportunities in research and care. Collaboration and partnership were celebrated throughout, with recognition given to outstanding contributions from researchers at all career stages.
EPILEPSY RESEARCH INSTITUTE
CONFERENCE UNITES GLOBAL EXPERTS TO DRIVE CHANGE IN EPILEPSY RESEARCH
The inaugural Epilepsy Research Institute Conference took place during National Epilepsy Week 2025, bringing together researchers, clinicians, early-career scientists and those with lived experience of epilepsy for two days of groundbreaking collaboration in Manchester.
The event opened with welcomes from Professor Matthew Walker and Rosemarie Pardington, followed by a keynote from Professor Ivan Soltesz (Stanford) on neuronal microcircuits and new pathways for treatment.
The conference ofered a rich programme, bringing together the epilepsy research community to share innovation, progress and ideas. Across inspiring talks, discussions and flms, delegates explored the Institute’s strategic themes and looked ahead to future opportunities in research and care. Collaboration and partnership were celebrated throughout, with recognition given to outstanding contributions from researchers at all career stages.
We look forward to repeating the event in two years’ time.
The Epilepsy Research Institute would like to thank our generous sponsors for this event:
ILAE British Branch, UNEEG Medical, UCB, Epilepsy Action, Neuronostics, Matthew’s Friends and Cardonet.
MEET THE ACCLAIMED FILM MAKER
BRINGING EPILEPSY TO THE BIG SCREEN
NEW COLLABORATION TACKLES LATE-ONSET AND VASCULAR EPILEPSY
series of workshops to bring together researchers, clinicians and people with lived experience to identify the most important research priorities. The frst workshop, held in April, included people with epilepsy and their carers, who shared their views on what matters most. These priorities will be combined with input from researchers and clinicians to create a shared roadmap for future studies.
Award-winning writer, director and public speaker Miles Levin, who lives with epilepsy, made a big impression at our inaugural conference when we screened his short flm Under the Lights.
The flm centres on Sam, a teenager with epilepsy who is driven by a powerful wish to feel “normal” – so much so that he decides to attend his school prom, fully aware that the fashing lights are likely to trigger a seizure.
The ultimate goal is to build a sustainable network for collaboration, training and new research, ensuring that fndings are translated into real improvements in care.
For Miles, storytelling is essential to building awareness:
“We act like we need to invent some brilliant strategy to end stigma. Movies and television will save us, but not until the classic point of reference is empathetic and not a device in a hospital show or horror
The short flm sparked extraordinary responses:
“I regularly receive fan mail and daily messages from people who
A new research initiative – the Collaboration for Late-Onset and Vascular Epilepsy Research (CLOVER) – has been launched to improve understanding of epilepsy in older adults. The project is coled by Professor Hedley Emsley, Dr Clare Gordon and Dr Sana Hannan, with researchers from Lancaster University, the University of Central Lancashire, University College London and beyond.
felt seen for the frst time… I know of people who are seizure free because they felt motivated to pursue treatment. I realised very quickly that if I could make a flm with major stars, it could be the biggest thing for epilepsy awareness.”
Late-onset epilepsy often begins in later life and is closely linked with underlying brain conditions. Research shows that people with late-onset epilepsy are more likely to develop stroke or dementia. Despite this, the condition has received little research attention, and better treatments are urgently needed.
We’re excited to share that the fulllength feature of Under the Lights is now complete and will be screening at festivals soon. For updates on screenings at festivals near you, follow the project: @underthelightsflm on Instagram and Facebook.
CLOVER was created to address this gap. The team is running a
NEW COLLABORATION TACKLES
LATE-ONSET AND VASCULAR EPILEPSY
TO THE BIG SCREEN
MEET THE ACCLAIMED FILM MAKER BRINGING EPILEPSY
A new research initiative – the Collaboration for Late-Onset and Vascular Epilepsy Research (CLOVER) – has been launched to improve understanding of epilepsy in older adults. The project is coled by Professor Hedley Emsley, Dr Clare Gordon and Dr Sana Hannan, with researchers from Lancaster University, the University of Central Lancashire, University College London and beyond.
Late-onset epilepsy often begins in later life and is closely linked with underlying brain conditions. Research shows that people with late-onset epilepsy are more likely to develop stroke or dementia. Despite this, the condition has received little research attention, and better treatments are urgently needed.
Award-winning writer, director and public speaker Miles Levin, who lives with epilepsy, made a big impression at our inaugural conference when we screened his short flm Under the Lights.
series of workshops to bring together researchers, clinicians and people with lived experience to identify the most important research priorities. The frst workshop, held in April, included people with epilepsy and their carers, who shared their views on what matters most. These priorities will be combined with input from researchers and clinicians to create a shared roadmap for future studies.
The flm centres on Sam, a teenager with epilepsy who is driven by a powerful wish to feel “normal” – so much so that he decides to attend his school prom, fully aware that the fashing lights are likely to trigger a seizure.
The ultimate goal is to build a sustainable network for collaboration, training and new research, ensuring that fndings are translated into real improvements in care.
For Miles, storytelling is essential to building awareness:
We’re excited to share that the fulllength feature of Under the Lights is now complete and will be screening at festivals soon. For updates on screenings at festivals near you, follow the project: @underthelightsflm on Instagram and Facebook.
CLOVER was created to address this gap. The team is running a
“We act like we need to invent some brilliant strategy to end stigma. Movies and television will save us, but not until the classic point of reference is empathetic and not a device in a hospital show or horror movie.”
The short flm sparked extraordinary responses:
“I regularly receive fan mail and daily messages from people who felt seen for the frst time… I know of people who are seizure free because they felt motivated to pursue treatment. I realised very quickly that if I could make a flm with major stars, it could be the biggest thing for epilepsy awareness.”
WAYS TO GET INVOLVED!
Christmas cards now on sale!
Send festive wishes and make a meaningful impact with our Christmas cards. Every purchase supports vital research, so you’ll be spreading joy while supporting a cause close to your heart. Shop the full selection now!
Gift in your Will: a lasting legacy Gifts in Wills play a signifcant role in funding our research portfolio. If you’re considering writing your Will, now is the perfect time to download our guide and make supporting epilepsy research your legacy.
Get involved in research
Our Shape Network is the UK’s largest group of research-interested people afected by epilepsy. Sign up today to hear about opportunities to take part in research, design studies and much more.
Invite your local MP to support epilepsy research
Help us recruit a network of parliamentarians to champion epilepsy research. By writing to your local MP using our letter template, you can help ensure epilepsy is on the agenda of policymakers.
