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 was cofounded in 2008 by Tamzin Jeffs, who
lost her sister to SUDEP 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
SUDEP Aware through attending events
22nd, Ottawa, Ontario - A fashion show of Judy Joannou Designs, cocktail reception,
silent auction and live music show. Thank you for showing your support by buying your ticket or making a donation today and helping to turn tragic loss into hope and promise for others. CTV News story/video (17 Nov 2013).
OUR SPECIAL THANKS to Frank Wilks and his concert audience in Owen Sound,
Ontario, on Oct 20th for so generously raising funds for SUDEP Aware!! You ROCK!!
Well done Cycle for Olly's
For successfully completing their
6-day, 650km cycle from Montreal to Toronto and bringing much awareness to SUDEP along the route!
July 22-28, what a wonderful week! Read about the adventure, the amazing people involved and how you, too, can lend your support
- it's not too late!!
|Awareness is the first step in finding the cause and prevention of
If you know someone with epilepsy, you can help by:
Photo: Loved ones lost to SUDEP
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:
Supporting Epilepsy Awareness
Month in the USA
With November now
upon us, here's an easy and fun way you can help to spread awareness of SUDEP and raise funds for
research - by buying labels and tags
Oliver's Labels gifts 20% commission to SUDEP Aware for each online
purchase. So, place your order today, and encourage family and friends to do the same, knowing it'll help us to continue our work.
OR, encourage the discussion of SUDEP through purchasing and distributing the
Making Sense of SUDEP campaign bracelets ($1 each) and pens ($0.50 each). For shipment cost and payment
instructions, email us with the quantity you'd like and your location.
Your support is important and much appreciated, thank
Keep the SUDEP conversation going. Help by FORWARDING
copies on to your friends and family:
March 2012, June 2012, November 2012 and .
hearing from you. Don't forget to SEND US your SUDEP-related news and stories.
Webinar - Understanding SUDEP Research & the Role You Can Play
REGISTER NOW for
this live webinar on Wed, January 15 and join
the discussion with George Richerson MD PhD, Lawrence Hirsch MD & Tracy Dixon-Salazar PhD.
International Call for
Openness on SUDEP
Photo: Philippe Ryvlin, Ley Sander, Jane
Hanna, Elizabeth Donner, Elson So, Tamzin Jeffs and Torbjörn Tomson
MONTREAL, June 26 2013 - SUDEP Aware
fully supports the international Call for Openness on SUDEP, led by SUDEP Action (UK)'s CEO Jane Hanna OBE and backed by the expert SUDEP panel
presenting at the International Epilepsy Congress in Montreal last week. Why not encourage your local epilepsy organization
to sign up too? Ask them to email us and we'll add them to the ever expanding list.
Professional Development Day
Photo: Deb Fawcett, Tamzin Jeffs, Karen Osland, Jeff Buchhalter, Rosey Panelli, Elizabeth Donner
& Rajesh RamachandranNair
MONTREAL, June 27 2013 - Our
HUGE thanks to all the speakers, members of the Canadian Epilepsy Alliance and sponsors of SUDEP Aware's first SUDEP Professional
Development day - for everyone's help in making it such a valuable learning experience for all
SUDEP research needs your help
If YOU have epilepsy, are 17
years or older and live in Ontario, please consider taking part in a 30 min telephone interview
to help SUDEP research. To learn more, or register, please contact us.
» SUDEP eBrochures for download and distribution
In the News:
"Raising His Voice", actor John O'Hurley honors his sister's memory by boosting awareness of epilepsy, Neurologynow.com (Aug/Sept
"Chelone Miller Remembered", USSnowboarding.com (8 April 2013)
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)
"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)
"Preventing SUDEP - Current Thinking & Strategies", Dr Daniel Friedman & Dr Dale Hesdorffer (2013)
"What Causes SUDEP?", Dr Elizabeth Donner & Dr Lisa Bateman (2013)
"Talking About SUDEP", Dr Elizabeth Donner & Dr Nancy Collins (2013)
Date for the diary:
19-22 June, 2014 - 2nd Partners Against Mortality in Epilepsy (PAME) Conference, Minneapolis, MN. Open to families, as well as medical professionals and researchers, and we very much look forward to seeing you there!
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)
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
Our thanks to the UofT CFSM for
making this publicly available.