SUDEP Action

Making every epilepsy death count
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The SUDEP Global Conversation – 2005 to 2013

International work on SUDEP has flourished since 2005. By 2005, Epilepsy Bereaved’s relationship with Epilepsy Australia had evolved. Electronic technology enabled the two organisations to write an awareness raising book. The book, entitled ‘SUDEP – a global conversation’, combined accessible articles from experts with powerful case studies from families.

By 2011, Epilepsy Bereaved, Epilepsy Australia and SUDEP Aware (Canada) had established a three way partnership.  SUDEP – Continuing the Global Conversation was published in 2011 and launched at the International Epilepsy Congress in Rome with the backing of the International Bureau for Epilepsy and the International League against Epilepsy.  

Close working relationships were developed as organisations around the world focused on SUDEP.  These included Brainwave, Epilepsy Australia and SUDEP Aware; USA SUDEP Coalition (American Epilepsy Society, Citizens United for Research in Epilepsy (CURE)). Others included the Epilepsy Foundation and the National Institute of Neurological Disorders and Stroke (NINDS).

As SUDEP awareness heightened in North America, the NINDS convened the first national workshop on SUDEP.  Jane was invited alongside SUDEP specialists Professor Torbjorn Tomson, Dr Lina Nashef and Dr Panelli as an international expert at the workshop.  Jane contributed a chapter in the handbook Sudden Death in Epilepsy – Forensic and Clinical Issues 2011.  

In 2012, Jane was invited to give the key-note address at the three-day Partners Against Mortality in Epilepsy (PAME) conference in Chicago.  Her speech prompted organisers Jeff Buchhalter and Gardiner Lapham to say: “Your personal efforts and those of Epilepsy Bereaved have provided inspiration for those of us in the United States and around the world.  Epilepsy Bereaved has demonstrated the importance of advocacy organisations in helping to inform the lay community and professional societies.”