Introduction

 

Welcome on behalf of SUDEP Action, Epilepsy Australia 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 is a growing maturity to the conversation and a real sense that prevention is within our grasp. This growth dictated our decision to capture the conversation again just three years after the book SUDEP: continuing the global conversation (2011) and to concentrate on an online version. We hope you like the new 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.

 

The 2005 Conversation

 

More than a hundred years had passed since 1868, when Bacon wrote in the Lancet about the urgent problem of sudden deaths in epilepsy. Yet, a myth held for many many years around the world that seizures were benign.

 

The spell was only broken in 1996 when the hard and long journeys of some tenacious families collided with the journeys of pioneering researchers and clinicians from all over the world. They shared the same commitment and they travelled to be in London to decide the way forward. Papers were published in Epilepsia, an international journal, bringing together the evidence and a plan to tackle the question of avoidable mortality. This message was  taken around the world, acting as a catalyst for research and as a baseline for action.  

 

Epilepsy Australia invited SUDEP Action to partner in a new book to capture what was happening, and in 2005 SUDEP: the Global Conversation was launched in Paris.

 

The 2011 Conversation

 

By 2011, research and advocacy on epilepsy-mortality was blossoming in many places, and in some it was well established. Launched in Rome with our new partner SUDEP Aware based in Canada, it captures journeys from around the world and includes the emergence of a strong movement across North America.

 

Thank you to everyone who has helped

 

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 and Denise Chapman, who as fellow-editors, designers and web builders have worked all hours of the day and night to make this happen. Also to Pauline Brockett, who has helped to keep us up to speed with research articles in what is now a fast moving field.  And to Irene Thomas and Barb Hayduk for their translations of family stories. 

 

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.

 

Jane Hanna, CEO, SUDEP Action

December 2014