First Epilepsy Memorial Day remembers all those lost to epilepsy
The first online Epilepsy Memorial Day on 10 May is a special day for connecting the bereaved community through social media. The day is an opportunity to remember together all those who have died from epilepsy. Although loved ones are remembered every day, this day provides a designated day where the world can join together online to remember all those who have lost their lives to epilepsy.
The event which will be held annually and is in addition to SUDEP Awareness Day in October and our Memorial Service held in London once every three years.
To mark the day, we will be sharing poems across all SUDEP Action social media platforms; we are also inviting people to join us and share their photos’ and memories.
SUDEP Action chief executive Jane Hanna, who set up the charity with four other women in 1995, following the death of her partner Alan, talked about what they day means to her saying:
“Epilepsy Memorial Day is a day when I will share my reflection of Alan, his life and how he changed mine.”
“To me the day will be about sharing thoughts, memories and tributes about Alan which are what connects me personally to other bereaved families and to the charity. When we launched Epilepsy Bereaved in 1996 to fight injustice, we began with a memorial service.”
SUDEP Action Bereavement Support Worker Tracy Cowdry commented:
“Epilepsy Memorial Day is a day for the bereaved to be kind to themselves, to take time out from their usual routine. To remember - a smile, a song, a conversation without interruption. Lives have been changed forever – but memories will last a lifetime. I have worked on the support line for many years and know how sharing can help, I have laughed and cried with many. Grief is a heavy load, but we are here to help the bereaved at any point along their journey.“
Most people with epilepsy live long and healthy lives but some do die prematurely, with around 1200 epilepsy deaths each year in the UK.
To find out more and how you can get involved please visit the Epilepsy Memorial Day page
Read Jane Hanna’s blog of her thoughts on the Memorial Day to be published on Tuesday.