Featuring the Shape Network in action, next steps for the UK Epilepsy PSP and much more…

A message from Epilepsy Research UK Trustee, Dr Rhys Thomas:

You may recall in October 2020, we published the report “#ALifeInterrupted – Shaping the Future of Research into Epilepsy” which highlighted the alarming inequalities in research funding for epilepsy. As part of our action plan, we promised to involve people affected by epilepsy in gathering the evidence needed to drive and enable greater investment. 

In this edition of Focus, we are providing an update on the work we’ve done so far to bring about the change so desperately needed. From establishing the Shape Network of over 400 ‘research interested’ people with lived experience to leading and funding a once in a generation national survey – the UK Epilepsy Priority Setting Partnership. We have reached out to every corner of the epilepsy community – people living with the condition, families, friends, carers, those bereaved by epilepsy, healthcare professionals, and organisations representing the interests of people affected by epilepsy and associated conditions.

The unified voice of the epilepsy community will be an essential tool in influencing government, and institutional and strategic funders to invest more in this chronically underfunded area of research and will support our own plans for sustainability.

The rigorous approach we have taken will provide us with the evidence we need to shape the future of research. But we can only do this through your support. We are laying the foundations for the future. Any gift or contribution you make today will power and sustain the momentum needed for transformation.

Thank you in advance for your support.

Dr Rhys Thomas
Epilepsy Research UK Trustee
Consultant Neurologist, Epilepsy Neuroscientist
Newcastle University



Shape Network in Action

This year we launched the Shape Network Application Clinics as part of our annual grant application assessment process. The clinics gave researchers the opportunity to meet members of the network to discuss their proposed research. By involving people affected by epilepsy in the development of a proposal, we are supporting researchers to produce stronger applications. Find out more.

Once in a generation national survey of the UK epilepsy community

The response from the epilepsy community to our UK Epilepsy Priority Setting Partnership (PSP) has been extensive. Epilepsy Research UK Research & Involvement Officer Anna Norton shares what’s next for the PSP. Learn what’s next for the UK Epilepsy PSP.

“I wouldn’t change taking part in this research for the world”

The involvement of people affected by epilepsy makes a substantial and positive contribution to research into the condition, but in some cases it can also be life-changing. Sophie, 21, took part in Dr Antonio Valentin’s study, funded by Epilepsy Research UK, to investigate if electrical brain stimulation can be used to treat drug-resistant epilepsy. Sophie has now been seizure-free for six years. Read Sophie’s Story.

Events are back!

Whether it’s the #Brainathlon virtual triathlon, the return of the iconic Ride London cycling race, or countless local events in YOUR area, there has never been a better time to get back out there and support vital research into epilepsy!

Read more about the return of events
Browse our website and sign up today


Only through your generosity will we STOP epilepsy interrupting lives. Thank you.