HOPE for Paediatric Epilepsy: London

HOPE for Paediatric Epilepsy: London is a small charity with a big impact. It is run entirely by volunteers and, during its 12 years of operating, has grown from a small local support group in North London to a registered charity with national reach.

HOPE aims to provide support and respite to families with children and young people affected by epilepsy. We have a robust and dynamic team of trustees, advisors, and volunteers who go above and beyond to help the families we support.

In the last 12 months we have secured two large-scale grants for our ‘Anti-Suffocation Pillow Project’ and to launch our ‘HOPE Against SUDEP Project’ (Sudden Unexpected Death in Epilepsy) enabling us to begin to donate seizure alarm monitors. In this time HOPE has also become a registered stakeholder at NICE (National Institute for Health and Care Excellence) contributing to updates on their epilepsy guidelines.

HOPE sent out a questionnaire to the families we support, the findings from which were presented at the annual British Paediatric Neurology Association conference earlier this year. We have also begun a research study into the use and impact of anti-suffocation pillows with the guidance of a world-leading expert in SUDEP.