Introduction

 

Welcome on behalf of SUDEP Action and SUDEP Aware.

 

We hope that you will find value in this knowledge repository about SUDEP and epilepsy mortality. Today this is a popular area for research and advocacy in so many parts of the world. If you read the past conversations from 2005 and 2011 you will find there has been a growing maturity to the conversation and a real sense that prevention is within our grasp. This growth dictated our decision to capture international opinion again in 2014 and to continue the conversation online. We hope you like the website. If you do, please friend us on Facebook where we will have update notifications in the future.

 

Major barriers to change need to crumble if science is to make a difference. For this reason, we have divided the Conversation into four main parts sitting alongside stories from families:

• FACTS is first because there is a substantial body of work that can be used to tackle mortality and help families;

• QUESTIONS includes vital ongoing research;

• CHALLENGES is about how we use and communicate the evidence so far;

• ACTION includes strategies and initiatives that have been developed to do this.

 

You will see stories from families across the whole site. These stories are the driving force for most of us in our work; are vital contributions to the conversation and demonstrate a working alliance between families, clinicians and researchers to make change. They have been placed randomly, unless there is a clear match with an article.

 

FAMILY STORIES may bring you to tears. The families are not victims – if you follow the journeys you will read many inspiring stories. They want to make the world a little better. The families remain the powerful drivers of change in many places but are also the most vulnerable. You will read in the FACTS section about the impact of these deaths and find out what can be helpful for the families.

 

We hope that this website will inspire investment across all these areas. For anyone wanting to make change, but not sure how  -  you can find some common themes on these web pages and in the PAST CONVERSATIONS.

 

On behalf of bereaved families all over the world, we would like to say a very big thank you to everyone for all the work that has happened and is happening to combat all causes of epilepsy mortality.

 

Thank you, too, to all the contributors from so many different countries for helping to produce an accessible commentary that anyone can use.

 

To the families that have shared a fragment of their pain – we thank you and hope that you find some hope from reading about the journeys of other families and the commitment of researchers and clinicians.

 

Thank you John O’Hurley – for helping break the taboo in the celebrity world – we hope more will follow your example.

 

And thank you to Rosey Panelli, Tamzin Jeffs, Denise Chapman and Pauline Brockett who as fellow-editors, designers and web builders have worked so very hard to make this happen.

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We hope one day there may be external funding for this project. In place of this we rely on hearts as well as minds and we depend on YOU keeping us in the know about significant developments – please get in touch.

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Jane Hanna, CEO, SUDEP Action

July 2017