Welcome to SUDEP Aware.

SUDEP Aware's mission is to promote knowledge and understanding of Sudden Death in Epilepsy (SUDEP) through education, research and support.

We hope that you will find the information you are looking for and encourage you to contact us if we can be of any assistance. 



Purple_Day.jpg




Will you be wearing purple on March 26th?







Founded in 2008 by nine-year-old Cassidy Megan, of Nova Scotia, Canada, Purple Day is an international effort dedicated to increasing awareness of epilepsy worldwide.

On March 26th, people are asked to wear purple to help spread the word about epilepsy.  It is also an opportunity to do so about SUDEP and we hope you will join us.



'Molecular Trigger' for Sudden Death in Epilepsy found?

See Baylor College of Medicine's news release (October 14, 2009) and Epilepsy Research UK's news coverage (November 18, 2009).



SUDEP bereavement support in North America:

Can you recommend an organisation or support group, in North America, that has helped/is helping you through your SUDEP bereavement? If so, we would love to hear from you.

We are collating a list of centres, to be made available on our website, to help others find local support information more easily.

Please email your suggestions or post them to the Epilepsy Foundation eCommunities discussion forum.



Register of 'SUDEP in Children,' for Canada:

SUDEP is estimated to account for 34% of all sudden deaths in children.


SUDEP Aware co-founder, Dr Elizabeth Donner, has recently been awarded a grant from
CURE to implement
Canada's first register of SUDEP deaths in children.


The very nature of SUDEP calls for urgent research, with the ultimate goal of preventing these deaths.  To that end, the objective of Dr. Donner’s research is to determine risk factors identifying those children at greatest risk of SUDEP and to ascertain possible protective measures.  This will be carried out using a network of collaborators across
Canada.  The team will implement a pediatric SUDEP register, which will attempt to collect data on every child in Canada
with a sudden death and epilepsy, for future analysis.  

Once the project is underway, contact information for families will be made available and progress updates will be posted to this website.

CURE 2009 Henry Lapham Memorial Award






Recent additions to the website:
◊ Home Page: An 'In Memoriam' calendar.
Documentation: How We Might Prevent SUDEP, Epilepsy Review article: SUDEP Research, The National Society for Epilepsy, UK.
Documentation: Scientific Literature, Research Bibliography update.









In Memoriam calendar
 -
To honour the memory of those we have lost to SUDEP


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


 
In Memoriam:
Slideshow Image Script