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Welcome

What an amazing Purple Day® and epilepsy awareness month
(in Canada)! A HUGE thank you to all of you who worked with us to bring better awareness to mortality in epilepsy during this time. Like the PurpleDayEveryDay initiative from The Anita Kaufmann Foundation, which encourages Purple Day® spirit 365 days a year, we hope you’ll continue to join us in raising awareness of SUDEP
all year round too! So do please keep sending us your event ideas, opportunity spots and brochure/bracelet requests!

Our special thanks to the Fawcett family for their 4th annual Jordan's Slide for SUDEP event last February. It was another great day, raising $19,000 in support of SUDEP Aware and bringing their four year total to an incredible $80,000!!

Other exciting news is that SUDEP Aware is an Official Charity for the 2015 Scotiabank Toronto Waterfront Marathon/Half Marathon/5k event. We invite you, your family and friends to JOIN US and walk/run in honour of your loved one as part of TEAM SUDEP AWARE, on Sunday October 18th, 2015. Please contact us to reserve your place on the team and stay in touch for registration info and news updates.

We also invite you to help us with a project we're currently working on. It involves talking with families who attended a coroner's court hearing, in Canada, as a result of the loss of their loved one to SUDEP. Please either contact us to participate or kindly forward this information to others who might be interested. Many thanks,

Tamzin Jeffs, Exec. Dir.

Photo: Purple Day/SUDEP Evan
Photo: Purple Day/SUDEP Bookmarks

Purple Day® raising awareness of SUDEP

Logo: Purple Day/Global Conversation

SUDEP Aware, together with the other editor organizations of SUDEP Global Conversation (SUDEP Action UK and Epilepsy Australia) and The Anita Kaufmann Foundation, have joined forces to bring greater world-wide awareness and understanding to mortality in epilepsy through Purple Day®. Read on ...

New Purple Day® SUDEP materials are now downloadable online or available from us for free (shipping not included) whilst stocks last.

Purple Day® is important to people for a whole variety of reasons. Some families bereaved by SUDEP have shared what Purple Day® means to them. Read on ...

You're welcome to add your comments too, contact us

 

SUDEP news from Dr. Donner

Photo: Dr Elizabeth Donner

An article, published online in Neurology, the Official Journal of the American Academy of Neurology, recently became the subject of much social media debate. The study review, by Liebenthal et al, explores the association between the prone position (ie lying on the belly, chest or face) and SUDEP. The main question of interest was whether a SIDS-like 'back to sleep' campaign (ie which promotes going to sleep on your back) could also help to reduce the possibility of SUDEP.

Dr. Donner addresses this and explains the findings as she shares her thoughts on "Does sleep position alter the risk of SUDEP?"

 

SUDEP research pilot grant announcement

Logo: The Center for SUDEP Research

Application Deadline:
Wednesday April 29 2015, 23:59 EDT

The Center for SUDEP Research (CSR) is pleased to announce The NINDS Center for SUDEP Research Pilot .

The CSR seeks novel pilot projects that will address the goal of understanding and eliminating SUDEP. This pilot program will award grants to researchers submitting innovative proposals that compliment and expand on the SUDEP research proposed in the CSR. The CSR plans to support one basic science pilot project and one clinical pilot project (clinical trials will not be funded through this mechanism, but studies involving human subjects are allowed). Successful applicants will be expected to work collaboratively with the CSR investigators.

This award is available to both young and established investigators exploring cutting-edge approaches to understanding and preventing human SUDEP. International applicants and applicants from outside the field of epilepsy with novel insight into the causes and prevention of SUDEP are welcome. Investigators already funded by the CSR are not eligible to apply. All materials must be submitted in English.

All applications will be submitted through WebGrants, Case Western Reserve’s CTSC’s online grant application system at http://webgrants.case.edu/.

The application must be received by 11:59pm EDT on Wednesday, April 29, 2015 to be considered for review. Any applications received after this deadline will not be reviewed.

Non-technical questions regarding this RFA or your application can be directed to Anita Zaremba at axz2@case.edu or call 216-368-1803.

For technical questions related to the use of the WebGrants program, please contact Support at webgrants-support@case.edu
or call 216-368-4669.

 

SUDEP in the news

SUDEP info online

*NEW* informational resources available on the web:

  • Center for SUDEP Research *NEW* website 
  • eGP epilepsy in general practice *NEW* website that aims to promote enhanced support of people with epilepsy in primary care. Site developer Dr Rosey Panelli, co-editor of SUDEP Global Conversation, says, "GPs are currently the missing link in epilepsy care.... I hope that the eGP initiative will help to engage GPs in epilepsy management, thereby improving health outcomes and quality of life for people with epilepsy." For more info ... 
     

A story shared

Photo: Abbey Delaney Ruchkall


Julie-Ann Waite lost her 19-year old daughter, Abbey, to SUDEP in 2013.

She shares HER STORY.

 

Email us your story 
Read more stories ...

Add your loved one to our In Memoriam Calendar, by emailing us their photo, name and dates.