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Welcome

It's been an extremely productive time for Epilepsy and SUDEP since our last eNewsletter.  Check out our new 'SUDEP events of note' section to find out what has been happening!  This week news comes in of SUDEP legislation passing the US Senate, which we follow with great interest.

March 26th was celebrated as the first official annual Purple Day in Canada, after Parliamentary decree in 2012 and worldwide support continues to grow for the grassroots effort dedicated to increasing awareness about Epilepsy.  It is a day of strong community spirit while also being a day of diverse significance to the many people impacted by epilepsy.  Here families bereaved by SUDEP share what Purple Day means to them.

Our thanks to all those who have contributed their stories, thoughts and feedback to the eNewsletter and the campaign.  We realize how difficult this can be, but know how much benefit it can bring others who find themselves in a similar position.  Don't miss this issue's story shared by Mark Stevenson and the discussion of books found helpful in grief by Barb Hayduk.

We're very pleased to announce that the latest in our eBrochure series, SUDEP: Information for parents and caregivers of children, is now available online for your download and distribution.

Thanks to the hard work and generosity of our fundraisers and campaign supporters, we are holding our first SUDEP Professional Development Day, in Montreal, for epilepsy support workers across Canada.

Together, we WILL come to Make Sense of SUDEP.

Tamzin Jeffs & Emma MacDonald, MSOS Campaign

SUDEP news from Dr. Donner

Dr. Elizabeth Donner discusses the relationship between SUDEP and seizures at night.  She also highlights the importance of talking about epilepsy and praises rapper Lil Wayne's recent public announcement.

SUDEP events of note

Photo: Jane Hanna OBE

2013 Social Accomplishment Award for Jane Hanna OBE, Chief Executive of Epilepsy Bereaved UK, in recognition of her outstanding personal contribution to the development of SUDEP understanding over the past 22 years.

To be presented at the IEC in Montreal, June 23-27, 2013.

New working name for Epilepsy Bereaved UK, ".. in recognition that the SUDEP landscape has changed".

 

Epilepsy Deaths Register launched by SUDEP Action to help,    ".. bring our knowledge one step closer to finding the answer to SUDEP and other epilepsy-related deaths".  People over 18 years old are invited to register information about deaths reported as, or suspected to be, epilepsy-related.

SUDEP Institute launched by the Epilepsy Foundation, with a kickoff meeting of coalition partners (including SUDEP Aware, AES, CURE, Danny Did Foundation, NINDS/NIH and NYU Epilepsy Center) in Washington DC, Feb 26 2013.  Its mission and primary purpose is to, ".. prevent SUDEP and support people confronting SUDEP".

SUDEP information online

New information and resources available on the web:

NEW eBrochure

Photo: eBrochure Covers

NOW AVAILABLE! The latest in the SUDEP eBrochure series is online for download and distribution:

SUDEP Information for Parents and Caregivers of Children with Epilepsy.

Getting involved

Families bereaved by SUDEP can help research by participating in an hour-long telephone call, or in-person interview (at McMaster University in Hamilton, Ontario) to investigate the optimal way to inform patients of SUDEP.

You input is sought towards the planning of the second Partners Against Mortality in Epilepsy (PAME) conference.  It is a unique 3-day learning opportunity for clinicians, basic scientists and patients/families and to maximize your benefit from this meeting we want to hear from you.  Send us your content and program suggestions and don't forget to save the date! - June 19-22 2014, Minneapolis.

A story shared

Photo: Tyler Stevenson

Mark Stevenson, who lost his 20-year old son, Tyler, to SUDEP in 2011 tells his story and how he has become involved in the SUDEP community.

To add your story, please email us. You are welcome to also include photos.

Words of comfort

Photo: Chris Hayduk-Costa

Barb Hayduk lost her 25-year old son, Chris, to SUDEP six months ago and turned to reading to help with the grief.  Here she shares an overview of some of the books she has found useful.

"Reading has offered me, first and foremost, a validation of my reactions from my loss. It has helped to put into words what I had been feeling but was not able to articulate.  It has reassured me that my grief is my own path and that I am allowed to walk it regardless of others’ expectations.  It has provided me with strategies and, in some instances, specific exercises to complete in order to face my loss and deal with it.  It has also connected me to other resources that can be of assistance to me."