SUDEP Action

Making every epilepsy death count
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SUDEP Action Special Event

22nd May 2013

 

The charity held a special event to announce its rebranding from Epilepsy Bereaved to SUDEP Action and to introduce the Epilepsy Deaths Register.  The event was held on 16th March 2013 at Dunchurch Park Hotel near Rugby.  It was attended by more than 100 families, health professionals and staff. 

SUDEP Action Chief Executive Jane Hanna also announced at the event that she will be dedicating her time to research and the Deaths Register for the next year.  Karen Osland, Deputy Chief Executive will take over as Acting Chief Executive for this period.  

Unveiling the charity’s new name, Jane explained that the charity has adopted SUDEP Action as a new working name and ‘making every epilepsy death count’ as the strap line.  She stated that the new name clearly distinguishes the charity’s area of focus.   Jane said SUDEP Action is also an easier name for people with epilepsy, policy makers and potential funders.  

Explaining the reason for the change of name in 2013, Karen said supporters had asked the charity to do so.  She said awareness of SUDEP as a term was developing on the internet adding that:  “some of the reasons why Epilepsy Bereaved was chosen as a name for the charity no longer exist.  Our web statistics showed Epilepsy Bereaved was no longer the main search term that brought people to us”.  

Jane introduced the Epilepsy Deaths Register and explained that it is the only existing register of all epilepsy deaths in the UK.  

The conference included a panel of experts who answered questions from bereaved families.  SUDEP Action Chair of Trustees Professor Stephen Brown led the panel that included Jane Hanna, Dr Greg Rogers, Dr Manny Bagary and Epilepsy Nurse Specialist Marie Hooper.

Concluding the event, Jane said in 2013, SUDEP Action will focus on providing information, Offering support when someone has died, Involving people to help effect change, Sponsoring research and education and Capturing data across the UK through the Epilepsy Deaths Register.  The charity will also work closer with Epilepsy Society and SUDEP Aware in Canada.

The Epilepsy Deaths register needs your help to gather this vital information. Please tell SUDEP Action about any death in someone with epilepsy that may be related to their epilepsy. Contact them by phone on 0330 0881 220 or register online.