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.
 
 


What a great Purple Day!

Thank you for wearing purple in support of raising awareness of epilepsy worldwide! 

Purple_Day_logo.jpgwww.purpleday.ca


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.
We'd like to put together a compilation of photos taken on Purple Day as we honored those we'd lost to epilepsy.
SHARE YOUR photos or thoughts about Purple Day!



PAME conference, Minnesota, June 19-22 2014
REGISTRATION NOW OPEN for families impacted by epilepsy, clinicians & researchers!

Logo: Partners Against Mortality in Epilepsy (PAME)
NEW! Travel Awards available for four adults travelling to PAME from Canada.  View INFO.  Applications due by March 31.
 

 

April 1 marks the end of our Indigo eGiftcard awareness + fund raising campaign!


Indigo_compilation_photo_square.jpg

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!


Photo: Slide 4 SUDEP 2014
 
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 SUDEP!



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:
USA or CANADA [group #33756]

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.
 

Photo: Oliver's Labels
 
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 to


PaleBlueDotPoster2.jpg
 
 
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 your support.
 
CTV News story/video (17 Nov 2013).
 



Well done Cycle for Olly's Team Pi!!

Photo: C4O 2013 team
 
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 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 healthcare team.



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.

This site  The Web 


Keep in the know about SUDEP
Friend us:
Facebook Twitter 
Read our recent SUDEP eNewsletter:
December 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 2012November 2012, April 2013 and September 2013.
We enjoy hearing from you.  Don't forget to
SEND US
 your SUDEP-related news and stories.campaign_logo.jpg


"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.


Webinar - Epilepsy-related Mortality: the Untold Toll on Public Health

Logo: Partners Against Mortality in Epilepsy (PAME)
REGISTER NOW for this live webinar on Thurs, April 3 and join the discussion with David Thurman MD MPH & Jeff Buchhalter MD PHD FAAN.
 


International Call for Openness on SUDEP


Photo: Call to Openness
 
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.
 


SUDEP Professional Development Day

Photo: SUDEP PD day speakers

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 involved!



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.



Most Recent:                                                                          
»   SUDEP eBrochures for download and distribution    Photo: SUDEP brochure covers

·        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 2013)
"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:

"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)

 

·         Events:

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!





Photo: Continuing the Global Conversation book cover 

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.