In the build-up to National Epilepsy Week, this month on the Research Blog we’re going back to basics to look at why and how we fund research into epilepsy. This week, we delve into a key part of how we work – collaborating with other organisations.
At Epilepsy Research UK, we believe that with people with epilepsy at our heart, we can drive investment into research to make a life free from epilepsy possible. We are a relatively small organisation, and we can’t do everything on our own. But one way we can make a big impact for people with epilepsy is to work with other organisations.
Collaboration benefits people with epilepsy in multiple ways. It brings expertise from different areas together, it helps to avoid duplicating efforts, and it makes the most of the funds that we and our partner organisations have available. We must acknowledge that our charity does not exist in isolation – we are part of an epilepsy community, and working with that community is the best way to strengthen it.
There are many different reasons for collaboration. Epilepsy often goes hand-in-hand with other conditions, and partnering with experts in those conditions can help to reveal new insights that benefit both sides. For example, last year we worked with the charity Autistica to co-fund a Fellowship Award to better understand the link between autism and epilepsy. People on the autism spectrum have been systematically excluded from epilepsy research for decades. This has meant that very little is understood about why epilepsies are so common in this group and how autistic people’s seizures should be treated. Together, we are funding the work of Dr Charlotte Tye, who is looking for ways to spot the early signs of autism developing in babies with epilepsy. This could enable early intervention to improve long-term quality of life.
Our collaborations can help us to understand the unique experiences of certain groups of people with epilepsy. This is particularly true for children with epilepsy. Working with the charity Young Epilepsy, we offered another joint fellowship award to researchers looking to address the causes, diagnosis, and management of the condition in childhood. Young people have played a key role in this process: the ‘Young Reps’, a panel of young people who advise Young Epilepsy on their work, prioritised the questions they’d like to see answered by research. We’ll be announcing the successful research project later this month during National Epilepsy Week.
Combining our funds with partners can also help direct new investment into research, such as with our Doctoral Training Centre grant scheme. The aim is to train the next generation of epilepsy researchers by creating ‘PhD hubs’ at universities across the country, with the funding we provide matched by the host university. By training groups of PhD students together in these hubs, the students can collaborate and acquire new skills and knowledge to become future leaders in epilepsy research.
As well as the activities above, we work with a range of other epilepsy charities who can offer help that we, as a research funding organisation, can’t provide ourselves. For example, we refer people with epilepsy to Epilepsy Action’s support helpline, as well as the bereavement counsellors at SUDEP Action.
Ultimately, as organisations for people with epilepsy and related conditions, we all want the same thing: to ensure everyone can live the life they want and deserve. We believe that working together, creating a community bigger than the sum of its parts, is the best way to make a life free from epilepsy possible.
Later in the month, we’ll be hearing from the chair of our Scientific Advisory Committee, Professor Mike Cousin, about how the SAC decide which research projects to fund. We’ll also hear from longstanding supporters Gill and Gordon about their motivation for supporting research.
Keep an eye out on the Research Blog during National Epilepsy Week (24th– 30th May) for exciting announcements and details of the new research projects we’re funding alongside our partner organisations.