Online Epilepsy Memorial Day 2018
Online Epilepsy Memorial Day is the special day online when we share our hearts and remembrances. For our cause, it is a quiet and peaceful day of togetherness. It is a moment when as a community we can connect together by sharing or by listening to others. Hearts full of pain for many, hearts full of joyful remembrances for some and knowing always that for each of us it is a journey.
This year on Online Epilepsy Memorial Day, we show the world that Prevent21 is about people and about families, not just numbers and statistics. Online Epilepsy Memorial Day is a day for us to create a space to share about the human lives lost and their families.
We look forward then to National Epilepsy Week (14-20 May) when we will invite all those connected to us, to become one of 1000 voices to support our Prevent21 campaign. Earlier this year, an NHS report on rising deaths in people with brain conditions was buried on a website during a week of snow storms. It was decided not to bring this to the attention of the press.
Whilst we have made sure that the report has seen light of day, we need your help.
We need voices and experiences to be powerful. Lend us your voice and you will be heard when I speak at a mortality meeting in Washington, this June. Also, at a SUDEP Action UK SUMMIT on epilepsy deaths in November.
All year we will be making the case to all those in power who can and should help. We need voices from our community to be alongside our evidence and our calls for action. More information will be released soon.
For now, I and the SUDEP Action team look forward to connecting with you first on Online Epilepsy Memorial Day.
Jane Hanna OBE, SUDEP Action CEO