The charity Epilepsy Research UK, along with Founding Partners, announced today that it will be forming the Epilepsy Research Institute UK later in the year. The Institute will drive strategic investment and capacity build the research ecosystem to radically advance the treatment and prevention of epilepsy.
Epilepsy is one of the most prevalent, serious neurological conditions, affecting 1 in 100 people in the UK. Current drug therapies don’t work for everyone – a third of people with epilepsy are living with uncontrolled seizures, and, shockingly, there are 21 epilepsy-related deaths a week.
The Institute will serve as a central hub for the epilepsy research ecosystem, promoting collaboration between academia, the NHS, industry, funders and patient organisations. Its joint aim is to expedite innovations for the 630,000 people in the UK with epilepsy through increased strategic research investment, capacity building, and research translation.
George Freeman MP, Minister of State for Science, Research and Innovation, said:
“I fully support the formation of the Epilepsy Research Institute UK. It is clear that progress will not be achieved by some extraordinary discovery one afternoon in a laboratory but by incremental aggregation of different disciplines, multidisciplinary working partnerships and a combination of deep biological science, neural pathway mapping, AI and technologies that require our top laboratories, and research institutes around the world to work together.”
Epilepsy Research UK CEO, Maxine Smeaton, said:
“We are delighted to receive the approval from government to become the Epilepsy Research Institute UK. Launching the Institute formally in October will enable us to expand our work to support all those involved in epilepsy research, alongside those already funded by Epilepsy Research UK.
“We are proud to have Young Epilepsy, Epilepsy Action, Epilepsy Scotland, and the International League Against Epilepsy British Branch as our Founding Partners, and by working together, we will operationalise the Top Ten priorities of the UK Epilepsy Priority Setting Partnership and implement the research themes in development through the #Every1EndingEpilepsy programme.”
Epilepsy Research UK Chair, Professor Matthew Walker, said:
“We know that we must do more for people living with epilepsy, but living a life free from epilepsy can only be achieved through research. Progress has been made in the areas of drug development, genetics and gene therapy, surgical interventions, and treatment trials, but there is much more to be done.
“The Epilepsy Research Institute UK will unite the epilepsy community in our collective ambition to stop epilepsy interrupting lives.”
Epilepsy Research UK President, and International League Against Epilepsy (ILAE) Global President, Professor Helen Cross OBE said:
“Key research recommendations in the IGAP released last year identified the importance of focussing not just on specific aspects of epilepsy, but on significant systematic changes – increased research investment, national and international collaborations, and strengthened research infrastructure. The Institute will be pivotal in helping us to develop our UK capacity which ultimately will have an impact worldwide.”
#Every1EndingEpilepsy Programme Director, Professor Tony Marson, said:
“Through the work of the national research collaborative #Every1EndingEpilepsy, the Institute will drive strategic investment into epilepsy research, creating a strong, vibrant and well-funded epilepsy research ecosystem.”
International League Against Epilepsy (ILAE) British Branch Chief Executive, Juliet Solomon said:
“We are absolutely delighted to be a founding member of the Epilepsy Research Institute. The plan to unite the Epilepsy community in the UK to better the lives of those with epilepsy through collaborative working is so needed and so welcomed.”
Epilepsy Action Chief Executive, Philip Lee said:
“We’re delighted to be involved in the Epilepsy Research Institute UK as a Founding Partner. The Institute will drive much-needed investment into epilepsy research, putting the voices of people with the condition right at the heart of that work.
“The lived experiences and views of our members and supporters are at the core of our involvement. We’re very pleased to be a part of the #Every1EndingEpilepsy collaborative, supporting researchers studying new treatments and ways to improve quality of life for people with epilepsy.
“As part of the disease modification stream of the programme, our aim is to help shape research that represents the priorities of people with epilepsy, and that’s carried out in a way they’re comfortable with.”
Young Epilepsy CEO, Mark Devlin said:
“There are over 100,000 children and young people living with epilepsy in the UK. Young Epilepsy has a proven track record of delivering ground-breaking research specialising in paediatric epilepsy.
“Now working together as a Founding Partner of the national Epilepsy Research Institute UK will unlock the collaborative power of a strong multi-organisational research ecosystem driving vital research forward in a bid to accelerate innovations. This new collaborative approach ensures we are putting research at the heart of our mission to improve the lives of children and young people living with epilepsy.”
Epilepsy Scotland CEO, Lesslie Young said:
“Epilepsy has for too long been at the wrong end of the investment and research spectrum. For this reason, people living with the condition have, again for too long, not been given equity of access to vital services including health, education, and employment opportunities. These issues have only been exacerbated by the pandemic and the cost of living crisis, both of which have disproportionately impacted those living with epilepsy.
“Epilepsy Scotland has led on key research and national studies in recent years and we are delighted to be a Founding Partner of the Epilepsy Research Institute UK. This is an exciting opportunity which facilitates collaborative work, strengthens the voice of those living with epilepsy and ensures that voice is heard by policy makers and stakeholders.
“This is a pivotal time for those of us who represent such a large group of people and the Epilepsy Research Institute UK is exactly the right vehicle to significantly improve the lives of people living with epilepsy both in Scotland and across the United Kingdom.”
