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Highlights

With just two months to go, attention is centered on the upcoming Partners Against Mortality in Epilepsy (PAME) conference. Families are a vital component of PAME and SUDEP Aware is proud to be able to offer PAME travel grants again this year to help families attend. If you’d like to apply but haven’t yet done so, please get in touch for your application form as soon as possible - the event is fast approaching!

We’d also like to hear from families living with epilepsy, who have known about SUDEP for at least 12 months. Enrollment is currently underway, with researchers now particularly looking for male participants willing to conduct a recorded telephone interview of about 45-60 minutes to help them investigate the impact of living with the knowledge of SUDEP.  Please share this information and encourage participation in this important study. 

As part of our ongoing commitment to furthering SUDEP research, and thanks to the kind generosity of our families and friends, we’re pleased to announce our impending launch of a competition for $50,000 funding of a SUDEP research project. From May 10th, please check our website and social media postings for details and updates.

Tamzin Jeffs, Exec. Dir.

SUDEP research

Photo: Dr Richard Bagnall

 

Senior Research Officer
Dr Richard Bagnall and his colleagues recently published the findings of their genetic analysis of 61 cases of SUDEP from across Australia.  

HERE he kindly explains the study and its implications for us.

 

 

In case you missed them! Some previous eNews SUDEP research articles that you might find interesting:

We are very grateful to the contributing doctors who generously give their time and expertise to help make their research findings available and understandable to us all. 

Research participation opportunity

Image: Research Participants Wanted

Dr Rajesh RamachandranNair and his team from McMaster University are investigating the impact of learning about, and living with the knowledge of, SUDEP.  More info ...

Participants who have known about SUDEP for at least 12 months are being sought to take part in a recorded telephone interview.

Please help by contacting us to enrol or by sharing this with your family, friends, patients and work colleagues who live with epilepsy.

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The funding of this study was made possible thanks to the generosity and support of the family/ friends of JORDAN FAWCETT, KHRISTIN KYLLO & LISA MONTANERA and their contribution to SUDEP Aware's Research Fund.
 

SUDEP info online

Informational resources of note on the web:

 

Getting involved

Photo: Oliver's Labels logo

You can raise money for SUDEP Aware for FREE!

We receive 20% for each purchase you make online!

Regular shipping is FREE in Canada + for orders over $30 to the US; $5 international.

 

Save 10% on your order by using promo code SUDEPAware!

Safety products (incl Found-it™ labeling; waterproof wristbands; allergy labels), photo labels, curbside bin labels, luggage tags, decals + more!

You can help both our awareness AND fund raising efforts by
sharing this with your family, friends + work colleagues!
http://www.oliverslabels.com/SUDEPAware

 

A story shared

Photo: Jesse Payne


Allicia Payne lost her 26-year old brother, Jesse, to SUDEP in 2008.

She invites you to
READ ABOUT JESSE
and his journey with epilepsy.

 

 

Email us your story
Read more stories ...

 

You are welcome to add your loved one to our In Memoriam Calendar. Please send us their photo, name and dates.