Welcome to SUDEP Aware,
a Canadian charity dedicated to raising awareness and understanding of Sudden Unexpected Death in Epilepsy (SUDEP), with the
ultimate goal of finding its cause(s) and prevention. SUDEP Aware was co-founded in 2008 by Tamzin Jeffs, who lost
her sister to SUDEP and lives with epilepsy, and paediatric neurologist/SUDEP researcher Dr Elizabeth Donner at
the Hospital for Sick Children, Toronto. To learn more about us and our work over the past 8 years, read on ...
SUDEP info now available in digital patient education platforms used in consultation rooms across
To help bring information about SUDEP to people with
epilepsy and healthcare providers, SUDEP Aware has partnered with two digital patient engagement tool providers in Canada: iMD Health Global and NexJ Connected Wellness.
EDITION 3!! Launches December
CONTENT FROM WORLD EXPERTS AND FAMILIES BEREAVED BY EPILEPSY
Follow the conversation ONLINE @
SUDEP Awareness Day - October 23
SUDEP Aware supports and applauds UK charity SUDEP Action's first ever SUDEP Awareness Day! A day dedicated to raising awareness of SUDEP and encouraging its open discussion between people with epilepsy
and their healthcare providers.
The day was
a great success with much international interest. If you would like to get involved
in SUDEP Awareness Day 2015 and would like to share your awareness raising ideas do, please, contact us.
to the Cycle for Olly 2014 Team!!
Aug 6-9, 2014 - For
the 3rd C4O, cyclists took to the roads of Ontario, covering 350kms from London to Tobermory, in support of SUDEP Aware's mission to reduce epilepsy-related deaths!
you, thank you to our cyclists and supporters!! For photos, please visit our C4O Facebook page.
The SUDEP Global Conversation Picks
Up Pace in Asia
than 16,000 copies of the book that brings together global expertise on SUDEP will have been distributed to epilepsy communities
around the world by the end of the 10th Asian & Oceanian Epilepsy Congress (OAEC) in Singapore between 7-10 August 2014.
Learn more ...
Photo L-R: Tamzin Jeffs (SUDEP Aware), Denise Chapman (Epilepsy Australia),
Jane Hanna & Dr Rosey Panelli (SUDEP Action)
SUDEP Aware's PAME Travel Grant Awardees at PAME 2014 (Minnesota, June 19-22)
PAME is a 4-day learning event that brings together families impacted by epilepsy, clinicians, researchers and advocacy groups to learn
from each other and discuss mortality in epilepsy together. Proudly sponsored by SUDEP Aware.
In this video, aired at both PAME 2012 and 2014, families explain why the conference is important to them.
The International Call for Openness on SUDEP
June 26, 2014 marks the one year anniversary since
Call for Openness on SUDEP went out - led by SUDEP Action (UK)'s CEO Jane Hanna OBE and backed by SUDEP Aware
and SUDEP experts at the International Epilepsy Congress in Montreal. Learn more ...
Photo L-R: Philippe Ryvlin, Ley Sander, Jane Hanna, Elizabeth Donner, Elson
So, Tamzin Jeffs and Torbjörn Tomson
|Thank you for wearing
purple in support of raising awareness of epilepsy worldwide! |
Purple Day is special to each of us, for many different
reasons. Some families bereaved by epilepsy have shared
what Purple Day means to them
like to put together a compilation of photos taken on Purple Day as we honored those we'd lost to epilepsy.
photos or thoughts about Purple Day!
April 1 marks the
end of our Indigo eGiftcard awareness + fund raising campaign!
Because of YOU - the campaign was a huge success, raising awareness around the globe and a fabulous $715.73 for SUDEP!
THANK YOU, THANK YOU for your kind and generous support. A special cheer to top fundraiser Wendy
Tobin, and her family and friends, who did an amazing job and raised the lion's share!
Another successful, fun-filled day @ Jordan's 3rd Slide!
Brings the total donation to SUDEP Aware to over $60,000!
A WONDERFUL achievement!
Our HUGE thanks to the amazing Fawcett
family, who work tirelessly in the fight against SUDEP. Also to each and every person who has so generously supported
this event and the work we do.
Gift purchases in aid of
Buy a MAGAZINE SUBSCRIPTION - where up to 40% of your purchase is
donated to SUDEP Aware! Shop online by clicking on the link that relates to your country of delivery address:
Help by telling
your friends, family and work colleagues, and encourage them to spread the word too! - to bring
more awareness to SUDEP and to a source for further information.
Buy personalized LABELS, TAGS & WALL DECALS - where 20% of your purchase is donated
to SUDEP Aware! To help you keep track of lost items, they come with a free 'Lost-and-Found'
option. Have fun shopping online!
Thank you for your support.
With our gratitude and thanks
Judy Joannou Designs, the Hayduk-Costa family and everyone involved in making the fashion show, cocktail reception and silent auction on November
22nd such a huge success!
We much value and appreciate
|Awareness is the first step in finding the cause and prevention of
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:
& SIGN UP to receive your triannual newsletter updates.
Keep the SUDEP conversation going. INVITE your friends and family to subscribe
too; FORWARD copies on!
We enjoy hearing from
you and encourage you to get in touch and SEND US your SUDEP-related news and stories.
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.
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
Available in English, French & Spanish
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.