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
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Recent additions to the website:
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.
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