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