SUDEP Aware www.sudepaware.org

www.sudepaware.org

Welcome to SUDEP Aware, a not-for-profit organization dedicated to raising awareness and understanding of Sudden Unexpected Death in Epilepsy (SUDEP), with the ultimate goal of finding its cause(s) and prevention. It's run by a partnership between Tamzin Jeffs, who lost her sister to SUDEP in 2007 and lives with epilepsy, and paediatric neurologist/SUDEP researcher Dr Elizabeth Donner..

"People with epilepsy have the right to know that SUDEP exists, and they have the right to be responsibly counselled about how to reduce the risk," says SUDEP Aware's Dr Elizabeth Donner.

Keep in the know about SUDEP
Friend us:
Read our recent SUDEP eNewsletter: April 2013
SIGN UP to receive your emailed copy.
Keep the SUDEP conversation going. Help by FORWARDING copies on to your friends and family: March 2012, June 2012 and November 2012.
We enjoy hearing from you. Don't forget to SEND US your SUDEP-related news and stories.

Webinar - Preventing SUDEP: Current Thinking & Strategies

REGISTER NOW for this live webinar on Wednesday, June 12. Join Dale Hesdorffer, PhD and Daniel Friedman, MD as they discuss the most current thinking on ways you can reduce the risk of SUDEP.

Support SUDEP Aware whilst playing your favourite sport!

JOIN the brand new amateur golf tour in Grey & Bruce Counties, Ontario, for a fun, social and competitive summer 2013!

Our thanks to Decisive Sports Marketing & Promotions!

Awareness is the first step in finding the cause and prevention of SUDEP

If you know someone with epilepsy, you can help by:
talking with them about SUDEP.
encouraging them to discuss SUDEP with their healthcare provider.
advising them to reduce their risk of SUDEP, and the number of seizures, through:
taking prescribed anticonvulsant medications regularly and reliably;
identifying and avoiding seizure triggers; and
regularly evaluating their epilepsy with their heathcare team.
Photo: Loved ones lost to SUDEP

In Memoriam:

Slideshow Image Script

If you would like to include your loved one in the SUDEP In Memoriam Calendar, or have any questions, please email Tamzin.

SUDEP Professional Development Day - June 27, Montreal

Thanks to the generosity and fundraising efforts of families and friends of Rick Berg, Jordan Fawcett and Lisa Montanera, SUDEP Aware is pleased to be holding the first SUDEP Professional Development Day for non-physician epilepsy support staff of epilepsy support centers across Canada.

REGISTER NOW, as spaces are limited, EMAIL US for more information or help spread the word by FORWARDING OUR FLYER.

In Loving Memory of
Drew Dolynchuk (1993-2013)

Thank you for your donation to SUDEP Aware

You can email us if you would like to add your message for Drew's family.

Volunteers needed - help SUDEP research

Can YOU help new research into SUDEP with information about your own experiences? Contact us.

People with epilepsy and relatives bereaved by epilepsy are needed for essential research into the best way to inform patients about SUDEP.

If you are over 16 years old with epilepsy OR have lost a close relative (spouse, sibling, parent, child) older than 16 years old due to presumed SUDEP, the investigators would value your participation in this important research.

Most Recent:
» SUDEP eBrochures for download and distribution

· In the News:

"Chelone Miller Remembered", USSnowboarding.com (8 April 2013)
News article/video news clip, Global News in Toronto interviews SUDEP Aware on Purple Day (26 March 2013)

Celebrities with Epilepsy:
Kelly Osbourne "Why Do We Struggle With Seizures" Express.co.uk (30 April 2013)
Lil Wayne "What Seizures Mean for Lil Wayne and Other Epileptics" (29 March 2013)

· Documentation:

"What Purple Day means to Families Bereaved by Epilepsy" (in pdf, also as ppt), SUDEP Aware (26 March 2013)
PAME conference summary, Epilepsy Currents, Vol. 13, No. 2 Supplement, pp. 5–21 (2013)
"Sudden Unexpected Death in Epilepsy – An Overview of Current Understanding and Future Perspectives", Dr Daniel Friedman & Dr Lawrence Hirsch, touchneurology.com (2012)
"Sudden Unexplained Death in Epilepsy: Epidemiology and Risk Factors", Dr Elson So, Neurology Asia (2011)
"SUDEP Counselling: How and When?", Dr Rosemary Panelli, Neurology Asia (2011)

· Webinar:

"SUDEP - what you need to know", Dr Lawrence Hirsch @ Epilepsy Foundation Connecticut (2011)

· Events:

Join us! Date for the diary: 23-27 June, 2013 - 30th International Epilepsy Congress, Montreal, Canada.
Page update - see local events held in memory of loved ones lost to SUDEP

A snapshot of SUDEP in 2011. This book includes a collection of considered observations on the many issues surrounding SUDEP, by leading authors in the medical, legal and professional fields, and also real life stories from families bereaved by epilepsy.

Editors: Epilepsy Australia, Epilepsy Bereaved (UK) & SUDEP Aware (Canada)

Photo: Dr Elizabeth Donner

SUDEP Aware's Dr Elizabeth Donner discusses our current understanding of SUDEP in the archived webcast of her presentation, at the University of Toronto's Centre for Forensic Science & Medicine, on 27th May 2011.

Our thanks to the UofT CFSM for making this publicly available.