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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

SUDEP news from Elizabeth Donner MD

Dr. Elizabeth Donner discusses recently published research findings from Mortemus, the MORTality in Epilepsy Monitoring Unit Study.

SUDEP legislation in North America

Photo: Dr. Orrin Devinsky

Dr. Orrin Devinsky provides an update on recent progress with regard to US legislation concerning SUDEP.


Professor of Neurology, NYU School of Medicine
Director, NYU Comprehensive Epilepsy Center
Director
North American SUDEP Registry (NASR)

SUDEP events of note

  • International Call for Openness on SUDEP led by UK's SUDEP Action CEO, Jane Hanna OBE, at the IEC in Montreal [June 26, 2013]More info ...
  • Award for Social Accomplishment in Epilepsy presented to UK's SUDEP Action CEO, Jane Hanna OBE, at the IEC in Montreal [June 23, 2013]More info ...
  • 1st Making Sense of SUDEP professional development day provided to members of the Canadian Epilepsy Alliance and patient support staff of epilepsy treatment centers across Canada, at the IEC in Montreal [June 27, 2013]Presentations available online soon.
  • 2013 Michael E. DeBakey Excellence in Research Award awarded to leading SUDEP researcher Dr Jeffrey Noebels, Professor (Depts of Neurology & Neuroscience) at Baylor College of Medicine [July 12, 2013].

Jane Hanna receiving her award from Solomon Moshe (President of the ILAE) & Mike Glynn (President of the IBE)

Professional development day presenters L2R: Deb Fawcett, Tamzin Jeffs, Karen Osland, Dr Jeff Buchhalter, Dr Rosey Panelli, Dr Elizabeth Donner & Dr Rajesh RamachandranNair.

SUDEP information online

New information and resources available on the web:

Getting involved

Raise awareness and encourage the discussion of SUDEP by distributing MSOS information brochures, bracelets and other promotional items.

Email us for costs and availability.

Photo: Brochure covers
Photo: MSOS awareness bracelets

Supporting fundraisers & researchers

Simply buy your clothing, sport, book and household labels and tags from Oliver's Labels!  They gift 20% commission from your order to the MSOS campaign!  Shipping is FREE in Canada and for orders over $30 to the US.  You can also help by spreading the word! 

 

Assist researchers by taking part in a 20-minute Reducing Epilepsy Deaths (RED) online research survey - for friends and family members of someone lost to epilepsy, and who are aged 18 plus.

A story shared

Photo: Nina Davies

Nadia and Thomas Davies lost their 52-year old daughter Nina, to SUDEP, in 2011.  Here, they tell her story and theirs.

To share your story, email us.

 

Poem: Please Be Gentle

By Jill B. Englar, ©1999
Reprinted by kind permission of the author, June 3 2013