Our Trustees

“Our son James died after an epilepsy seizure when he was 21. Until that morning I had accepted that his epilepsy was inconvenient but never thought it was seriously life threatening. Mixed with the waves of sadness I was massively angry that we didn’t know this could happen. I searched to understand, ran marathons to raise money (and burn off some of the emotion) and worked with a number of epilepsy charities to try to help prevent such losses in the future. SUDEP Action found a special place with me because its mission matches exactly with mine.”

“My brother John, diagnosed with epilepsy at university, sadly died from SUDEP in 1995 aged 41. I was diagnosed with epilepsy myself in 1984, and in 1999 I nearly lost my own life. I studied epilepsy vocationally at university and helped SUDEP Action with leaflets and talks. In 2002, I contributed towards the Sentinel Audit which led to the development of NICE Epilepsy guidelines. As a SUDEP Action trustee since 2004, I’ve used my experiences in quality assurance and my knowledge of epilepsy to present to medical audiences and patients.”

“I am a consultant neurologist and epilepsy specialist in Swansea. I have a research interest in using big data to improve the lives of people living with epilepsy and to reduce epilepsy inequalities and mortality. I have learnt from experience how SUDEP Action plays a vital role in supporting bereaved families and raising the awareness of epilepsy mortality.”

“My youngest daughter, Emily, who only had four seizures, died aged 19 at Leeds University in 2012. My husband and I had no idea that Emily could die and we’d never heard of SUDEP. The shock and grief were overwhelming but we have found that supporting SUDEP Action has given us a positive focus for our grief. I firmly believe that had we been educated about SUDEP then Emily might be alive today. My background as a chartered accountant and my various volunteering roles as secretary and treasurer for small societies stands me in good stead for my trusteeship of SUDEP Action.”

“I retired from working as a GP in a busy inner-city practice in Oxford in 2011. For many years I have been interested in women’s health, especially research into perinatal mental health. I have worked with the Confidential Enquiry into Maternal Deaths for two decades and am now a writer / editor for Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in the UK (MBRRACE-UK). In 2016 I became RCGP representative to the Valproate Stakeholder Network, coordinated by the Medicines and Healthcare products Regulatory Agency (MHRA).”

“My son Tom died of SUDEP aged 24. He had suffered badly from epilepsy for many years, but we had no idea that he was at risk of dying. We gradually became aware that, not only had he been massively at risk, but there was this wonderful charity, working so hard to raise awareness of the risks and to mitigate the chances of it happening to others. I discovered SUDEP Action provided bereavement support to a surprisingly large number of families and decided that I wanted to get involved.”

“My elder sister Catherine, died from SUDEP at age 29, in 1989. This was before SUDEP Action or Epilepsy Bereaved had been established and when information was almost impossible to find. I know now how much it would have helped us to have received the support and access to information which SUDEP Action provides. I became a trustee in 2010. I work as a speech and language therapist for the NHS and in the voluntary sector, so my main role as a trustee is to maintain close links with the specialist counselling and bereavement support service that SUDEP Action offers.”