23rd October marks International Day of SUDEP Action
Epilepsy Organisations in the United States, Europe, Australia and around the world have joined to recognize October 23rd as a global awareness day for Sudden Unexpected Death in Epilepsy, or SUDEP. The goals for this day are to advance awareness about SUDEP, to encourage people with epilepsy to learn about SUDEP and their individual risk and to honor the lives lost to the most common form of death in epilepsy.
This international collaboration has grown strong since 2008, and now in 2017, there is a multi-faceted movement to understand and prevent SUDEP. Initiated by families and advocates who were desperate for answers, this movement now includes scientists, clinicians, medical examiners, non-profit organizations, and governmental agencies. This broad group of stakeholders has rallied to end sudden death in epilepsy by launching innovative research projects, awareness and educational campaigns, and bereavement support services.
Progress in the U.S. is supported by a multi-day event devoted to epilepsy mortality known as Partners Against Mortality in Epilepsy (PAME). The fourth PAME meeting will be held June 14-16, 2018 in Alexandria, Virginia.
Details about PAME are at http://pame.aesnet.org/.
The Epilepsy Foundation of America and the Danny Did Foundation are among the nonprofits supporting SUDEP Action Day on October 23rd. UK-based nonprofit SUDEP Action – which created SUDEP Action Day – has participated in PAME meeting since 2012, enabling a deepening of the relationships across the pond and the opportunities to advocate together.
Tom Stanton, Executive Director of the Danny Did Foundation and Co-Chair of PAME said,
“This is the fourth time that we will celebrate SUDEP Action Day, which includes the opportunity to honor the special relationship with bereaved families both in the UK and in the U.S. The SUDEP movement takes daily action to bring us closer to prevention, but October 23rd is an especially powerful day when we can all share common messages and raise our voices together. We are grateful to SUDEP Action for taking the lead to engage all advocates around the world to take part.”
Jane Hanna OBE, CEO of SUDEP Action said,
“The special relationship we have with PAME and with many of the U.S. organisations has meant that distance has not been a barrier. The opportunities to share and for the SUDEP movements in both countries to support each other means we can make faster progress together. The SUDEP movement is a success story so far only because we have not let geography get in the way.”
Tom Stanton Co-Chair PAME 2018
Jane Hanna OBE, CEO SUDEP Action