The Anita Kaufmann Foundation, together with the editor organizations of the newly launched online resource, ‘SUDEP Global Conversation’ (SUDEP Aware Canada, SUDEP Action UK and Epilepsy Australia), have joined forces to bring greater awareness of mortality in epilepsy around the world through Purple Day®. Pictured above, AKFF Executive Director Debra Josephs attends the SUDEP Global Conversation raising awareness at World Congress of experts showcasing our important materials. Thousands of epilepsy specialists are attending the 31st International Epilepsy Congress (IEC) in Istanbul, which runs from 5th to 9th September, 2015.
Nine-year-old Cassidy Megan created the idea of Purple Day® in 2008 to bring better understanding to epilepsy and to reassure people with epilepsy, and their families, that they are not alone. Now we plan to help her to do the same for families impacted by death in epilepsy via new Purple Day® SUDEP materials, and by promoting the SUDEP Global Conversation website www.sudepglobalconversation.com as a recommended resource for reliable SUDEP information.
Sudden Unexpected Death in Epilepsy (SUDEP) refers to the death of a person with epilepsy that occurs without warning, and where no other cause of death can be determined. SUDEP risk varies from person to person, but there are simple measures that can be taken to lower the risk. The first step is an honest, open discussion between a person with epilepsy and their doctor.
Cassidy Megan says, “SUDEP is still not talked about enough. By highlighting it as part of Purple Day’s global awareness effort, we hope to encourage conversation around the world. We need to learn more about it, find its cause and how to prevent it.”
According to Tamzin Jeffs, SUDEP Aware Canada’s Executive Director, “Through partnering with Purple Day and with the help of The Anita Kaufmann Foundation initiative Purple Day Every Day, we hope to bring better awareness to SUDEP. It’s a vital risk that must be assessed with all the other epilepsy-related risks when making daily lifestyle decisions. People need to keep fully informed and aware of all the facts about their epilepsy, not just on Purple Day but Every Day.”
AKF Executive Director Debra Josephs adds, “It is important that this conversation has started in a very real way. We are so pleased to support these important efforts on behalf of all those living with epilepsy and its consequences every single day.”
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About SUDEP Global Conversation
SUDEP Global Conversation is a unique SUDEP knowledge resource created by a three-way collaboration between SUDEP Aware Canada, SUDEP Action UK and Epilepsy Australia. It combines the latest research and insight of nearly 60 experts with the powerful accounts of over 35 bereaved families from around the world.
This new, web-based resource was launched last December and follows the success of two earlier books (created in 2005 and 2011) that have been widely distributed, in both hard copy and electronically, between 2005 and 2014.
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