Christine Jeans (Member)

SUDEP Action Scotland Development Officer for Scotland I raise awareness of epilepsy risks including SUDEP and work with others to help bring about change for people with epilepsy. I do so in memory of my son who I lost to SUDEP. People need to be aware of SUDEP in order to address their risks and put preventive measures in place to keep themselves safe. SUDEP Action is the only UK charity dedicated to raising awareness of epilepsy risks, tackling epilepsy deaths and supporting those bereaved by the condition. Although almost entirely funded by bereaved families, they provide: • The only specialist service and care pathway for families after an epilepsy death • Unique on-line research platform for over 700 bereaved families since 2013 • Dedicated research programme pump-priming research collaborations with leading UK experts on risk factors, lifesaving devices and impact on families: Resulting in a €2million grant to the lead researcher of a wearable device project and another project supported by the NHS Innovation Accelerator Programme • Standardised clinical checklist for risk and digital self-management tool to support people with epilepsy • SUDEP and Seizure Safety training tools for GPs and Ambulance crews • Their information and services are used internationally: Supporting organisations in USA/Australia so far