SUDEP Action

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A tribute to Jennifer Preston


Everyone at SUDEP Action is saddened to hear of the death of Jennifer Preston, who died in her sleep on Boxing Day, aged 89.

Jennifer was one of the five founders of Epilepsy Bereaved, now known as SUDEP Action, and a former trustee and Vice-Chair of the charity. Beyond that, she has been a tireless supporter and fundraiser of the charity for decades and an ambassador for raising greater awareness of SUDEP itself in wider circles, both in the UK and internationally.

Jennifer’s son William died as a result of an epilepsy seizure in 1988 when he was just 22. In 1994, The Guardian published an article about a boy called Matthew who had died in a similar way. Jennifer once said: “It was the first time I realised there were other deaths like William’s. As a result of this article, I met Matthew’s mother, Catherine, and Jane Hanna, whose partner, Alan had also died in similar circumstances. Together with Alan’s parents, and Sue Kelk, who had lost her daughter, Natalie, we formed the charity Epilepsy Bereaved in 1995.”

Jennifer and her family raised funds to produce ‘Epilepsy and the Young Adult’ in 1990. The booklet became the first in the world to include awareness of SUDEP. 

She also undertook the first survey of epilepsy organisations’ information on SUDEP in 1995. She worked as part of the charity’s team for many years, presented to the first international workshop on SUDEP in 1996 and set out how information was included in the ‘Epilepsy and the Young Adult’ booklet. Another bereaved mum / youth worker wrote in Youth Today in 1997: “My experience is similar to that of other families – none of us were told our child could die of epilepsy. It is my belief that this booklet, unlike any other publication, offers awareness of all the facts including SUDEP, without scaremongering.”

Jennifer presented in Ireland, France, America and Australia. As her son Matt, a well-respected food critic, writer and presenter, is based in Australia, she would regularly make visits there – combining these with further presentations and developing strong relationships with the  early Australian SUDEP Champions from the late 1990s including Rosie Panelli, SUDEP Action Vice-President. Products of these initiatives include ‘SUDEP, The Global Conversation’ and our successful collaboration to take the SUDEP and Seizure Safety Checklist to Australia though our established partnership with Epilepsy Action, Australia.

Her son Matt, posted the news of his mother’s death on social media, saying: “I’m sad and numb that she’s gone, but lucky to have had her in my life for so long. She was a strong, intelligent and generous woman with a broad mischievous streak. She’ll be keenly missed by all her kids, grandkids and kids-in-law as well as her many friends here, in the UK and around the around.

“She loved the sun, travel and ice cream, but was a ferocious enemy of vegetables. Above all, she loved hanging out with anyone younger than herself!
“As she once said to me when she was in her sixties; “I still think I’m 25 and I’m determined to act that way. Loved her to bits…”

Jane Hanna OBE, SUDEP Action CEO and a co-founder of the charity with Jennifer, Sue Kelk, Catherine Brookes and Sheila Pring said: “Jennifer was a true pioneer in a world that held hard to a myth that epilepsy was benign for so long.  She used great clarity, tenacity and charm to help change that locally and globally. The world was made better by having Jennifer in it. It has been such a great privilege to have known and worked with her over a lifetime.  I have sent out heartfelt condolences today to Jennifer’s daughters Eleanor and Katie and son Matthew and to all the family. Many thousands of families and communities affected by epilepsy have been helped by their mum.”

If you would like to send your own condolence or remembrance about Jennifer please email [email protected]