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One of the very important challenges for Epilepsy Australia is to raise awareness and understanding of possible risks related to living with epilepsy. While this is a difficult topic for all concerned it is essential that we use research and community education to clearly identify where risks exist and what strategies can be developed to reduce them. This includes the question of epilepsy-related death. While modest progress has been made in understanding epilepsy-related risks, there is still much work to be done, especially in the area of Sudden Unexpected Death in Epilepsy (SUDEP).
In 2009 Epilepsy Australia established a SUDEP Education & Research Fund. The purpose of this Fund is to advance our knowledge of epilepsy-related death through undertaking or facilitating research and to provide community education on epilepsy-related risks.
This Fund receives donations from families, friends and colleagues who have lost a loved one to epilepsy, and donations dedicated to epilepsy research. Donations to this fund can be made online or for more information, email sudep@epilepsyaustralia.net
The first project to be supported by this fund is Reducing Deaths in Epilepsy Project.
Reducing Epilepsy Death Project
Epilepsy Australia National Help Line 1300 852 8653
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More than 15,000 copies of a book that brings together global expertise on SUDEP will have been distributed to epilepsy communities around the world by the end of the 66th annual American Epilepsy Society conference.
Epilepsy Australia, in partnership with Flinders University is conducting an online survey exploring the experiences and needs of people who have been bereaved by epilepsy.