Since becoming Chair of the Scientific Advisory Committee (SAC) in 2020, I’ve witnessed a huge increase in research funding made by Epilepsy Research UK which has only been possible due to the incredible generosity of our supporters. And this year is no exception, with Epilepsy Research UK investing a record £1.7 million in research. I know I speak for the whole SAC in saying that we are truly humbled by the steadfast commitment and enthusiasm from you all, in providing much needed funding to drive and enable life-changing, life-saving research.
For our part, we endeavour to ensure that every penny you raise is targeted to research that is of the highest scientific quality and rigour. Importantly, your support is allowing Epilepsy Research UK to sculpt the future research landscape by generating additional capacity in epilepsy research. This is being done at the very early career stage, using Epilepsy Research UK Doctoral Training Centres to attract the brightest minds to our field, but also in cultivating leaders of the future, via Emerging Leader Fellowships. In addition to this, we support the very best science in the form of both Endeavour Project Grants and Explore Pilot Studies.
Many of these awards are only possible through collaboration and funding partnerships with other charities and stakeholders. Over the past three years we have awarded Fellowships co-funded with Autistica, Young Epilepsy, the Association of British Neurologists and the Stroke Association, we have also cofunded projects with Epilepsy Action and funded research at other charities such as SUDEP Action and Epilepsy Society. Some of our recent fellows have been wholly funded by generous legacies from Epilepsy Research UK supporters. The need for partnership in epilepsy research has never been more apparent, and it’s fantastic to see the progress made by the #Every1EndingEpilpesy programme, which continues to increase in momentum.
We are very excited by the research that Epilepsy Research UK has funded in 2023, which features a combination of basic, clinical and data science, all with the potential to improve the lives of people affected by epilepsy.
Epilepsy Research UK has a laser-like focus on building capacity in epilepsy research at all career stages. This year was no exception, with three Emerging Leader Fellowship Awards that aim to bridge the gap between fundamental and translational epilepsy research. Our first awardee is Dr Amy Richardson at University College London, who will investigate whether altering the movement of chloride ions between brain cells is a potential therapy for people with refractory epilepsy. In collaboration with the Nucleic Acid Therapy Accelerator Hub, Dr José Prius Mengual from Oxford University will examine the relationship between epilepsy, sleep and stress with the aim of designing novel nucleic acid-based therapies. Finally, in a co-funded project with The Tuberous Sclerosis Association, Dr Amanda Almacellas Barbanoj from University College London will exploit new preclinical models of Tuberous Sclerosis to design novel gene therapies. These researchers are at the forefront of research into new epilepsy therapies, and we are hugely excited by both them and their research programmes.
We also awarded four Endeavour Project Grants which address both basic epilepsy mechanisms and research that may change clinical practice. Professor Anna Adlam and colleagues at Exeter University will adapt an existing web-based interface with the aim of improving executive function in children with epilepsy. In contrast, Dr Felix Chan from Aston University will determine whether altering the diet of people with Tuberous Sclerosis, by targeting a specific metabolite, may be a novel therapeutic intervention. Dr Amy McTague and colleagues at University College London will transform skin cells taken from people with a specific type of epilepsy into brain cells, to determine whether altered movement of chloride ions occurs, and to screen for drugs that correct this movement. Finally, Dr Anita McGrogan and colleagues at Bath University will interrogate patient records to reveal how exposure to anti-seizure medication during pregnancy impacts outcomes for affected children.
The exploitation of “big data” seen in the work of Dr McGrogan is emerging as a key driver in accelerating epilepsy research. Epilepsy Research UK recognises the importance of these developments, we have funded two Innovation in Healthcare Awards this year. The first, a collaboration with Angelini Pharma was awarded to Professor Mark Richardson (Kings College London) and the second, seed funding was awarded to Dr Owen Pickrell (Cardiff University), who will use artificial intelligence and machine learning algorithms to extract key information from electronic health records to identify risk factors for refractory epilepsy. This is a rapidly developing research area, and as you would expect, Epilepsy Research UK is leading the way in providing funds for this ground-breaking work.
All research projects start somewhere, and some need a boost to generate the evidence needed for larger funding applications. That’s why we’ve funded three Explore Pilot Studies, to test bed new and exciting ideas. Dr John Craig (Belfast Health & Social Care Trust) and colleagues will gather much needed information on the impact of anti-seizure medications on breastfeeding. Dr Caroline Witton from Aston University will test out a wearable device that pinpoints the location of epileptiform activity in people waiting for epilepsy surgery, whereas Professor Maria Thom (University College London) will extract tiny amounts of DNA from brain probes from people being prepared for brain surgery to identify new genetic mutations.
As you can see, we have funded an exciting range of projects and people this year, all of which directly respond to the UK Epilepsy Top Ten Research Priorites. The awards area culmination of nine months of effort by our fantastic SAC, a collection of expert scientists and clinicians, who all offer their services to Epilepsy Research UK voluntarily. The SAC integrate their own considerable expertise with independent external peer reviewers, as well as valuable feedback and input from the Epilepsy Research UK Shape Network through Application Clinics. The latter in particular is essential in ensuring that we fund projects that are directly relevant to people living with, and affected by, epilepsy.
It has been a privilege to Chair the SAC over the past three years and see the potential impact of the projects that we fund on the lives of people affected by epilepsy. Research into basic mechanisms, clinical outcomes and translation of new therapies is all being accelerated by our fantastic supporters, and it is a humbling experience to assist in the small way that we do.
