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23 October marks International Day of SUDEP Action
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
SUDEP Action partner with Epilepsy Action Australia for global awareness campaign
SUDEP Action has established an exciting new collaboration with Epilepsy Action Australia in time for SUDEP Action Day 2017. This collaboration provides the most current information related to epilepsy-related death to families across Australia.
Epilepsy affects approximately 250,000 Australians, and yet very few people are aware that people with epilepsy are at risk of Sudden Unexpected Death from Epilepsy (SUDEP).
The first phase of this project has seen Epilepsy Action Australia adopt SUDEP Action’s new information pages on epilepsy risks, mortality and risk reduction. They will also be distributing specially adapted versions of our information leaflets to clinicians, families, and people with epilepsy across Australia; starting with SUDEP Explained for Health Professionals and Reducing Risks leaflets.
Carol Ireland, Chief Executive Officer of Epilepsy Action Australia, said she was “delighted to launch this powerful partnership that she hopes will lead to more research, awareness and more lives saved. Ensuring people have a reliable source of information is the first important step. Through combining our strengths, we hope to reach as many professionals and families as possible across Australia,” said Carol.
This year’s International SUDEP Action Day is on Monday, 23 October, and is dedicated to raising much-needed awareness of, and taking action against this silent but tragic consequence from epilepsy.
SUDEP Action CEO, Jane Hanna OBE said: “We are excited about the shared commitment that this partnership represents to tackling SUDEP and epilepsy deaths in Australia. Collaboration is the best way to tackle this and maximise value to the epilepsy community.”
SUDEP Action has always welcomed collaborations with organisations in the UK and across the globe, to support increasing awareness of epilepsy risks and mortality. However, this is the first formal collaboration in Australasia to join forces to tackle these issues using existing resources and knowledge.
For further information and to hear the latest news about this exciting collaboration visit:
You can also see Epilepsy Action Australia’s new video about SUDEP, which they will be using to help them raise awareness across Australia here.
Exposure and supporter activity was busy for the 2017 event.
Here are just a couple of examples: