Epilepsy interrupts the lives of ordinary, extraordinary people.  It’s invisible, unpredictable and frightening.  The current lack of investment in epilepsy research is staggering and if we don’t take action now epilepsy will continue to interrupt lives. As one of the UK’s leading epilepsy research funders, we are taking urgent action to correct this, but we need your help.

We need to evidence the impact of epilepsy and gain greater understanding of the priorities for people living with the condition. By doing so we will be able to drive greater investment in research and accelerate innovations in the diagnosis, treatment and prevention of epilepsy.

Last year, as part of the launch of our #ALifeInterrupted campaign, we called on people affected by epilepsy to help us with this vital programme of work.

Our ask is simple – help us build our SHAPE NETWORK and create the UK’s largest ever community of people living with epilepsy to drive, enable and shape future research.

The response so far has been both humbling and overwhelming. Within days, hundreds of people living with epilepsy completed our research priorities questionnaire and joined our SHAPE NETWORK.

If you are living with epilepsy, and haven’t already done so, please do consider completing our research priorities questionnaire and, if you wish to be further involved in research, join our network. Your involvement is vital in helping us to unlock further progress. Who better to push forward research than those affected?

Our #ALifeInterrupted special edition FOCUS – which you can find here – aims to give you an insight into what it means to be more involved in research. You know only too well the interruptive and disruptive nature of epilepsy. You possess essential insights that will hugely benefit research. You know how a change in dosage affected your ability to perform certain daily activities, what helped you endure an especially difficult aspect of your condition or treatment, or why a research study should be designed in a certain way so that you can be more easily be involved.

Epilepsy has been with us for centuries and will continue to be with us for many more years unless we do something about it. Please join us and take action to supercharge research into epilepsy – find out more here.

Maxine Smeaton
CEO, Epilepsy Research UK