SUDEP Action

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Family and friends raise awareness in memory of Emily Sumaria

The Family and Friends of Emily Sumaria who died of Sudden Unexpected Death in Epilepsy (SUDEP) at the age of 19 in December 2012 have raised £7000 in her memory in aid of SUDEP Action. SUDEP Action is the only charity in the UK solely dedicated to preventing epilepsy deaths.

Emily was a student at Leeds University and a member of the University Hockey team at the time of her death.  Her family and friends have been involved in various events to raise awareness of SUDEP and SUDEP Action.  One friend did a song while others took part in marathons, swimming competitions, charity campaigns (RAG nights) in memory of Emily.

Ella Rothwell did a cover of One Direction’s ‘what makes you beautiful’ which she posted on YouTube.  Talking about the song Ella said: “I was motivated to do the song mainly to raise awareness of the severity of epilepsy among young people like my friends and I.  It was also very much a tribute to Emily and was my way of trying to take something positive from a terrible tragedy and, if possible, make a difference.” 

Ella went on to say: “Emily was treasured by so many of us and was a true friend who never failed to make us laugh. Emily, also known as sumo to many of us, was just fantastic; I don't really know how to express it any other way! I chose SUDEP Action because it was the sudden loss of such a great person that made it all that much harder, and I couldn't even begin to imagine what it must have been like for her family. So to know that this charity works hard to support family and friends with the sudden loss as well as all the research to help prevent epilepsy deaths made it easy for me to choose to support them.”  Ella’s video has had 8,903 views so far.

A group of friends from the Leeds University Hockey team swam in memory of Emily in February 2013.  Katie Gilkes and Kirsty Greaves were part of a team of seven who swam 3 miles each to make up atotal of 21 miles which is the length of the English Channel.  Katie stated that Emily was a great friend and a truly amazing person.   Also describing Emily, Kirsty said: “not only was she great on the hockey pitch, but she was also a truly amazing friend who will be greatly missed by so many people”.

In May 2013 Gaby Salmon ran the Leeds Half Marathon in memory of Emily in aid of SUDEP Action.  

Commenting on all these activities, SUDEP Action Fundraising Manager Rachel Groves said: “The fact that so many people have been moved to do something positive in memory of Emily is testament to the huge impact she had on people’s lives. To help support the campaign in Emily’s memory, please donate at”.

We will provide more updates on all the other activities held in memory of Emily Sumaria on our website. 

Click here to listen to Ella Rothwell’s song in memory of Emily Sumaria.