SUDEP Action

Making every epilepsy death count
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National Conference: Friday 9 to Sunday 11 June 2017


This year’s Annual Conference in Leamington Spa was incredibly special, it marked the charity’s 21st year and we looked back at what has been achieved and our exciting plans ahead.

It started with an interactive session with Professor Henry Smithson (Professor of General Practice, University College Cork) on the Friday evening. We had some very helpful contributions from families, that will be used in future reporting - covering what really matters to the bereaved families following a death, which will help inform our work with clinicians and government. Families spoke of the charity as a ‘lifeline’ and deep sadness over the lack of communication about risk.
It showed how powerful your stories can be in driving change and how the Epilepsy Death Register (EDR) helps us capture this.

Followed on the Saturday with a newly styled conference – short ‘lightening’ sessions by an expert panel of researchers and an interactive Q and A session. 
Here is just a snapshot of what was discussed on the Saturday:

Professor Esther Rodriguez-Villegas, talked through the role of technology (wearable devices and monitors) in helping people with epilepsy. Also, the exciting future ahead for the wearable apnoea detection device (WADD), a trial of which was funded by our supporters.

Professor Mike Kerr facilitated the lightening presentations, in which he talked about his experience as a clinician and the importance of research into SUDEP.

Dr Craig Newman talked about his work as a clinician, as part of the EpSMon team. Exploring the SUDEP/Risk conversation and his experience with epilepsy, on a professional and personal level.

Professor Henry Smithson led the informal session on Friday evening, and gave insight into the findings from the EDR - ‘Learning lessons after sudden death’.

Dr Omar Abdel Mannan presented the important work he will be undertaking with SUDEP Action on understanding sudden deaths in children. 

The Saturday afternoon was immensely powerful as Jack Megson, 17, spoke about growing up with the charity, from when he started as a young boy, to all the work he has done with the charity, in memory of his aunt Helen. 
This Conference is a time when he can remember her. 

The Conference gave the opportunity for attending families to share what the charity meant to them and we hear some moving and truly touching accounts; thank you for this.
We also outlined out upcoming 2017 appeal which we are excited to be able to officially launch with you all soon. Details will be shared with you shortly. 

What the Annual Conference is most distinctly about is the conversations and the exchanges both during the meeting and outside where friends gather. Laughter and sadness in equal measure.  Many of those continuing to support SUDEP Action after many years, give a moment or a glimpse of hope in the future to the newly bereaved who are just starting their journey with us.
All of this helps to power the charity in our day to work.

So, thank you to all who attended.