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Welcome

As 2013 draws to a close, SUDEP Aware can look back on another productive year of widening and deepening awareness and understanding of SUDEP.  It is very much a team effort, made possible by the help, support and collaboration of many of you.  This has included presenting at our SUDEP Professional Day, telling a personal story, arranging a benefit event, providing eBrochure translations, joining a fundraising team, connecting with other families, purchasing awareness raising materials, sharing a Facebook posting, arranging local media coverage and sending us donations.  The list is endless, as is the number of people to whom we owe a huge debt of gratitude.  We appreciate each and every one of you and thank you for your invaluable contribution.

2014 looks to be another busy year ahead!  If you are not already involved, are interested and would like to learn more, we invite you to contact us.  Enquiries from volunteers, awareness and fund raising suggestions are always very welcome, so too are offers from families wishing to reach out and connect with others.  There are many opportunities to raise awareness of SUDEP.  If you spot one, get in touch and let's make it happen!

We look forward to another year of working together, encouraging discussion and making sense of SUDEP.

Wishing you the very best for 2014!

Tamzin Jeffs & Emma MacDonald, MSOS Campaign

SUDEP news from Elizabeth Donner MD

Photo: Dr. Elizabeth Donner

This issue, Dr. Elizabeth Donner continues the theme of a webinar she recently co-presented.

Here she discusses the importance of talking about SUDEP and the vital need to do so.

 

 

 

SUDEP: the global conversation

Photo: Dr. Rosey Panelli

Since the late 1990's, Dr. Rosey Panelli has been an advocate for improving communication about SUDEP and encouraging its development towards a more global conversation.  Here she shares a presentation she gave at the Presidential Symposium of the 30th International Epilepsy Congress in Montreal this year.

Dr. Panelli is a co-editor of the online resource SUDEP: continuing the global conversation.

SUDEP in the news

SUDEP information online

New information and resources available on the web:

SUDEP eBrochures en español

Photo: Spanish eBrochure covers

NOW AVAILABLE for your download and distribution: five SUDEP eBrochures in Spanish, each aimed at different target audiences.

 

Getting involved

Photo: Indigo logo

Join our team!  Help us to raise awareness and funds from the comfort of your living room, just by getting your family/friends/colleagues to shop at Indigo - an online book/ebook/toy/gift seller!

Our 45 day campaign starts on 15th January; in honor of the anniversary of the loss of Olivia Mullin who is the sister of SUDEP Aware's co-founder Tamzin Jeffs.

It runs through Valentine's Day, the celebration of love and affection, and we dedicate this campaign to the memory of all those we've lost to SUDEP.

To get involved: register as a team member and fundraise in memory of your loved one by emailing us.

We earn 10% in cash for every $25, $50 or $100 eGiftcard purchased through this campaign.  You can help by buying cards for your friends and family and encouraging them to do so for theirs too!  The cards are redeemable online or in-store and are a perfect gift for birthdays, anniversaries, Valentine's Day or just because you feel like it!  To avoid disappointment, don't delay as the campaign closes the first day of Epilepsy Awareness Month in Canada - 1st March!

Getting involved and helping to Make Sense of SUDEP together!!

Giving support

Another gift that gives TWICE with just one purchase is a MAGAZINE SUBSCRIPTION!  Here you pay no more than usual but up to 40% of your purchase is donated to SUDEP Aware and the MSOS campaign!  Shop online by clicking on the link below that relates to the magazine's country of delivery address:

  • USA
  • CANADA [you'll need to insert group #33756]

You can also help by telling your friends, family and work colleagues, and encourage them to spread the word too! - the greater the awareness we can bring to SUDEP, and sources of good information for better understanding, the closer we'll come to preventing such deaths in the future.

A story shared

Photo: Jordan Fawcett

Deb Fawcett lost her 15-year old daughter Jordan to SUDEP in 2010.  Here she courageously talks about her three year journey in grief.  She shares what she has learnt and what she has found helpful along the way.

Email us your story.
Read more stories ...