SUDEP Action

Making every epilepsy death count
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The Journey to SUDEP Action - whats in a name?

Epilepsy Bereaved has always been about action on SUDEP. We called ourselves Epilepsy Bereaved because SUDEP was not recognized. Once we worked with researchers on developing the definition of Sudden Unexpected Death in Epilepsy (SUDEP) we talked endlessly about whether we should be a SUDEP charity. Without global recognition of SUDEP we worried about bereaved families not being able to find us.

The change of name to SUDEP Action is a powerful moment in our story.  The change of name is in recognition that the SUDEP landscape has changed.  There is so much to do and this is the time to take the name.  

We chose SUDEP Action because it is this charity that worked with researchers to come up with the definition of SUDEP, and is a global leader on it.  So after a series of in depth interviews with supporters, and stakeholders, plus the backing of staff and trustees, the charity decided to become SUDEP Action. 

Our strap line – making every epilepsy death count is because we are just as concerned about the death of someone who has died from status epilepticus, an accident or a suicide as someone who has died from SUDEP.  We need to have SUDEP in our name because SUDEP is the least understood. 

The logo has changed to five people holding arms.  It represents the five women who started the charity and today all the people who are supporting the charity.  It also represents the five arms of our work.  The new name coincides with the unveiling of a new, more accessible and informative website and an epilepsy deaths research register.  The Epilepsy Deaths register aims to collate data on epilepsy deaths from across the UK. 

We hope the new name will reach more epilepsy patients, families, medical professionals, policy makers and influencers.  By using the acronym SUDEP in our name, we are sending the clearest possible message that we are serious about the issue.  We want everyone to know about it; to know that epilepsy can kill and only by raising awareness of risk and carrying out research into SUDEP will we find the answers to the questions posed all those years ago by five bereaved women, who were determined to ensure their loved ones did not die in vain.