From health, education and employment to family and friends, the pandemic has impacted every aspect of life and whilst many of us are looking forward to a degree of normality, for people with epilepsy – many of whom have been in shielding – the interruptions will continue. But the last few months have also given us signs of hope – the speed of the UK vaccine rollout has shown what we can achieve when organisations, researchers and people affected come together.

The ability to prevent epilepsy has so far eluded us. A woeful lack of research funding has meant progress has been slow to the extent that there is still much we don’t know about epilepsy. Worse still, epilepsy research investment continues to lag behind other less prevalent neurological conditions.

As the only charity dedicated to driving research into epilepsy, we are committing to go further than we’ve ever done before to identify and support the innovations so urgently needed for people affected by the condition.

As part of our plans #BeyondCovid, we are listening to people affected by epilepsy and using the information and insights we glean to develop our research priorities. But we need to go further than that. Our plans are not just about listening, they’re about actively involving people in research. Through our  SHAPE NETWORK we will create a powerful community of people, who together will drive and enable life changing, lifesaving research into epilepsy.

Research breakthroughs require funding, but it’s not just about the research we fund – we need to go further than that to create an environment for research to flourish. Knowledge and information need an infrastructure that supports research, encourages shared learning and nurtures talent and so we will be investing in capacity building activities and projects that will accelerate progress in the field of epilepsy research.

The task ahead is significant.  We can’t do it on our own – we need to go further than that. We will focus on building collaborations to maximise the impact of our collective efforts. This is not a time for silo thinking – the task ahead is too important.

Each and every breakthrough demonstrates the huge potential of research to achieve our vision of a life free from epilepsy. Quite simply, there has never been a better time to harness the recent, unprecedented advances in science, medicine and technology for the benefit of people living with this disruptive, interruptive condition.

For people living with epilepsy and their families, their friends and their carers, every day counts. Every study is a step forward in our understanding. And every collaboration is strengthening efforts against the devastation of epilepsy on children and adults.

From across research charities, the health service, academia, government, supporters, industry and beyond – we are calling on the nation to get behind our #BeyondCovid plans and help us deliver on our promises.

Joe Brice
Epilepsy Research UK Trustee