Welcome to the latest newsletter from SUDEP Action
As I am sure you are aware, we have had a busy summer. Samantha Cameron kindly hosted a reception for us at No 10 Downing Street to help raise awareness of and funds for SUDEP research. We used this reception to launch our fundraising drive to raise £165,000 by March 2015 to fund trials of a wearable apnoea detection device on 50 people with epilepsy; to fund professional reporting to The Epilepsy Deaths Register (EDR) and an e-learning platform. Findings of the EDR were presented at the Partners Agains Mortality in Epilepsy (PAME) conference devoted to SUDEP in North America.
In this issue, you will see new research in Australia which shows that the majority of friends and families of those who died from their epilepsy were not aware of the risks prior to their death. This is also one of the themes that has emerged from the first year of reporting to the EDR and highlights the extent to which ignorance about epilepsy deaths and especially SUDEP is still prevalent. We will be hosting our first annual SUDEP Awareness Day on 23 October and would like to invite you to get involved.
London Coroner calls for openness on SUDEP to encourage young people to take epilepsy medications
James Lewis, a 22 year old maths student at Bristol University, died suddenly at his home in his sleep earlier this year. James had his first seizure at 15 and was then seizure-free until two years Read
Public health burden of SUDEP deserves greater attention
A study has concluded that the public health burden of SUDEP is substantial and deserves greater attention from clinicians, researchers and the public health community. The study which Read
Family and friends not aware of risks of epilepsy related deaths - study finds
Research gathered from an online survey of people bereaved by epilepsy was presented in a poster at the 10th Asian Oceanian Epilepsy Congress in Singapore in August. Titled 'Epilepsy-related Read
SUDEP Global Conversation gains momentum in Asia
Delegates attending the 10th Asian and Oceanian Epilepsy Congress (AOEC), which took place in Singapore this August, heard an update on SUDEP research from Dr Rosey Panelli Read
Dr Panelli speaks at Epilepsy and Society Symposium in Singapore 2014
A very successful Epilepsy and Society Symposiums was held in Singapore in August in conjunction with the 10th Asian Oceanian Epilepsy Congress. Developed by local and regional committees of the International Bureau for Epilepsy (IBE) Read
SUDEP Action takes part in PAME Conference 2014
Newly appointed SUDEP Action International Research Officer Dr Rosemary Panelli represented the charity at the North American Partners Against Mortality in Epilepsy Read
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