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Welcome

Attending the American Epilepsy Society (AES) annual meeting in Seattle earlier this month was undoubtedly the highlight of our year. It was heartening to discover SUDEP as one of the prevailing themes of discussion throughout the five day meeting that was attended by approximately 5,000 of the world’s leading epilepsy professionals.

Three out of 14 (ie. one fifth) of the meeting’s press briefings and releases were SUDEP-related. One included the US National Institutes of Health’s public announcement of their $5.9 million commitment towards SUDEP research. What very welcome news!

Another cause for celebration this year was in April, when SUDEP Aware became a registered Canadian charity. An important milestone for us, made possible by you and your support of our work to reduce death in epilepsy. Thank you for all your help and willingness to get involved.

Our main priority is to continue to encourage the discussion of SUDEP between people with epilepsy and their healthcare providers - bringing more people into the global conversation. It looks as if 2015 will be another busy year and we look forward to working with you then.

In the meantime, from myself and the team at SUDEP Aware, we send you all good wishes this holiday season.

Tamzin Jeffs, Exec. Dir.

New SUDEP website

Photo: SUDEP GC 2014 logo

**Now online** A unique SUDEP knowledge resource created by a collaboration between SUDEP Aware, SUDEP Action UK & Epilepsy Australia. The site combines the latest research and insight of nearly 60 experts with the powerful accounts of over 35 bereaved families from around the world. Visit the site ...

We are extremely grateful for the generous donation of time and sharing of expertise and experience of all the contributors. We thank them for making this resource possible, for helping to encourage the discussion of SUDEP and for assisting the challenge to reduce epilepsy deaths.

Digital patient education platforms

SUDEP Aware has partnered with two digital patient engagement tool providers in Canada - iMD Health Global and NexJ Connected Wellness - to bring information about SUDEP to consultation rooms across Canada.  Read more ...

Photo source: iMD Health Global, Platform demo

PAME 2014 reports

Photo: Dr Elizabeth Donner with PAME travel award recipients

SUDEP Aware is a founder organization of the Partners Against Mortality in Epilepsy (PAME) 4-day biennial meeting that brings together researchers, clinicians, advocacy organizations and families to discuss death in epilepsy.

Four parents impacted by SUDEP received a travel grant from SUDEP Aware to assist their attendance at PAME 2014 in Minneapolis, Minnesota last June (pictured above).

Barb Hayduk, who lost her 25-year old son, Chris, to SUDEP in 2012 and shares her story below, tells us about her first ever PAME experience.  Read on ....

Deb Fawcett, who lost her 15-year old daughter, Jordan, to SUDEP in 2010 (read her story on the new Global Conversation website) shares her thoughts about attending PAME and the emotions it evoked.

Dr. Elizabeth Donner, a co-founder of SUDEP Aware, reports on the meeting, its strengths and the main areas of discussion.  Read on ...

Photo L-R: Barb Hayduk, Fred & Wendy Tobin, Dr Elizabeth Donner and Deb & Dave Fawcett.

SUDEP in the news

SUDEP info online

New information and resources available on the web:

A story shared

Photo: Chris Hayduk-Costa

Barb Hayduk lost her 25-year old son, Chris, to SUDEP in 2012.  Last year she informed us of the books she has found helpful in her grief. 

Now she invites us to
READ ABOUT CHRIS, who was diagnosed with epilepsy just 5 years before his death, and to learn from his story.

Email us your story.
Read more stories ...