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Just three weeks to go until the second Partners Against Mortality in Epilepsy (PAME) meeting!  Have you registered yet?!  SUDEP Aware's a proud co-founder and sponsor of this 4-day meeting that brings together researchers, healthcare providers and families to discuss SUDEP.  This year, thanks to the hard work of our fundraisers and generosity of donors, we're very pleased to provide travel grants to enable four SUDEP-bereaved parents to attend this worthwhile event.

In this edition of our eNewsletter we continue the important theme of encouraging SUDEP discussion, to discover the practices of healthcare providers and the views of families.  Two authors of recently published research articles kindly share their findings with us, below.

If you're new to SUDEP Aware and would like to know more about us and the work we've done since 2007, you can read Our Story.

As always, if you want to - learn more, get involved, offer your awareness or fund raising ideas, donate some expertise or would like to share your story - we encourage you to contact us!

Tamzin Jeffs & Emma MacDonald, MSOS Campaign

SUDEP mythbusting

Photo: Dr. Rajesh RamachandranNair

Pediatric neurologist and SUDEP researcher Dr Rajesh RamachandranNair, from McMaster Children's Hospital in Ontario, provides an update on his research findings that challenge the ongoing myth: 'People with epilepsy do NOT want to know about SUDEP'.

Read his previous update, Oct 2012 ...
 

SUDEP discussion

Photo: Jan Buelow

Dr Janice Buelow is VP of Programs & Research at the Epilepsy Foundation and co-author of the recent scientific publication 'Discussing SUDEP with Patients: Practices of Healthcare Providers'.

HERE she provides a summary of the research conducted and its findings.
 

SUDEP in the news

SUDEP info online

New information and resources available on the web:

SUDEP grant awarded

Photo: Dr Kazuo Okanari accepting SUDEP grant

SUDEP Aware is delighted to award Dr Kazuo Okanari a $16,000 grant in support of his SUDEP research work at the Hospital for Sick Children in Toronto. 

Made possible thanks to the generosity of family and friends of: Evan Bayko, Drew Dolynchuk, Jordan Fawcett, Chris Hayduk-Costa & Sam Richmond.

Generalized tonic clonic seizures most often precede SUDEP, but the reason death occurs and how it happens is still very much a mystery. Postictal generalized EEG suppression (PGES) is a pattern of suppressed brain activity commonly seen on an EEG after a seizure.  In an effort to better understand the mechanism of death in SUDEP and how to prevent it, researchers are investigating PGES. 

Dr Okanari’s research examines PGES in children and aims to determine factors that predict PGES.  Using advanced EEG analysis techniques, the neurophysiological underpinnings of PGES are also being explored.  The long term goal is to identify children at a greater risk of SUDEP and to facilitate the application of preventative techniques.

Dr Okanari graduated from the Oita University School of Medicine and was a Pediatric Neurologist at Saiseikai Hita Hospital in Oita, Japan prior to joining the Hospital for Sick Children in Toronto.  Currently Dr Okanari is  an epilepsy research fellow in the laboratory of Dr Hiroshi Otsubo.

Photo L-R: Dr Hiroshi Otsubo, Dr Kazuo Okanari, Tamzin Jeffs & Dr Elizabeth Donner

A story shared

Photo: Carolina Barcelos Carneiro de Oliveira Miller

Eric Miller lost his 25-year old wife Carolina Barcelos Carneiro de Oliveira Miller to SUDEP in 2011.  HERE he shares what happened and his hopes for the future.

Read about his Candlelight Concerts for Epilepsy Awareness in New Jersey ... and follow him as he climbs Machu Picchu for epilepsy awareness this August!

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