The urgent need to focus on epilepsy mortality prevention as a matter of top priority has again been highlighted by research findings that indicate people with epilepsy are 11 times more likely to die prematurely than the general population.
At the 30th International Epilepsy Congress (IEC) in Montreal last summer, SUDEP received excellent coverage thanks to: Dr Rosey Panelli’s presentation at the Presidential Symposium; a dedicated session chaired by Dr Elizabeth Donner; Making Sense of SUDEP's first Professional Development day; the awarding of SUDEP Action’s Jane Hanna for her SUDEP work and the launch of a Call for Openness on SUDEP campaign. Some event information and links are included below.
Since our last issue, there has been further progress in SUDEP legislation in the US and we thank Dr. Orrin Devinsky for providing us with an update here.
There has also been the publication of findings from a study of mortality in epilepsy monitoring units and this is the focus of Dr. Elizabeth Donner's SUDEP news section.
With just over four weeks to go, thoughts are turning towards Epilepsy Awareness Month in the US and how best to use this opportunity to encourage the discussion of SUDEP. Making Sense of SUDEP (MSOS) campaign materials are available for distribution and there are also other ways you can help. We look forward to hearing from you with your orders and any ideas you might have. We thank Nadia and Thomas Davies for sharing their story and awareness raising efforts with us.
Making Sense of SUDEP, together.
Tamzin Jeffs & Emma MacDonald, MSOS Campaign