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Welcome

Our First Issue of the Making Sense of SUDEP Campaign eNewsletter is being launched today in recognition of international Purple Day and Epilepsy Awareness Month in some countries. Together with our global partners, we are working to raise awareness of epilepsy and to achieve our ultimate goal of preventing sudden, unexpected death in epilepsy (SUDEP).

Through the Making Sense of SUDEP campaign, we will pool our knowledge, tools and resources about SUDEP, encourage informed discussion and lobby for improved research, education and support.

We invite you to get involved, lend your expertise, share your experience, offer your ideas and stay in touch. Our quarterly eNewsletter will keep you informed about the campaign, its events and resources, along with the latest SUDEP news. Only through our collective effort will we finally succeed in Making Sense of SUDEP.

Tamzin Jeffs & Cyndi Wright, MSOS campaign

SUDEP News from Dr. Donner

Photo: Dr. Elizabeth Donner

SUDEP Aware's co-founder, Dr. Elizabeth Donner, was recently awarded two research grants from the Ontario Brain Institute. One grant is for researching the causes of SUDEP and the other is towards determining optimum diet therapies for children with epilepsy.

Here she updates us with recent SUDEP research findings.

 

NEW SUDEP eToolkit

Photo: SUDEP eBrochures

AVAILABLE MID APRIL: Download and Distribute the Campaign's NEW SUDEP eBrochures - Developed with the help of campaign partners, which include SUDEP experts, families, researchers and advisers, we are pleased to announce the impending release of four brochures. Each one addresses SUDEP and provides information to help address the specific questions and concerns of: People with Epilepsy; Young Adults; People Bereaved by Epilepsy; and Healthcare Providers.

The brochures are one part of the campaign's eToolkit, designed to improve understanding of SUDEP and to facilitate discussion among families, healthcare providers, death investigation professionals and researchers.

The eToolkit will evolve as more tools are created and shared by collaborators, and as new information about SUDEP is revealed. Check back regularly or sign up for eNewsletter updates.

Online SUDEP Book

Photo: Front Cover

Leading Experts and Families Bereaved by Epilepsy Share their Knowledge of SUDEP - This downloadable publication, from an editorial partnership between Epilepsy Australia, Epilepsy Bereaved and SUDEP Aware, brings an array of information, views and experiences from around the globe.

Our thanks to campaign partners who have helped to distribute hard copies of the book. A few are still available, while stocks last, from SUDEP Aware, members of the Canadian Epilepsy Alliance or your local Epilepsy Foundation in the US.

A Story Shared

Photo: Doug & Traci Cleverley

Doug Cleverley, who just recently lost his wife, Traci, to SUDEP, openly shares his story and his perspective on SUDEP to highlight the importance of raising awareness and the need to encourage frank discussion of SUDEP.

If you would like to add your story to the website (500 words maximum, please), you can email us. You are welcome to include a photo of your loved one.

Have Your Say

Photo: Friends lost to SUDEP

As part of the campaign, we are putting together a short video/slide presentation for the opening ceremony of the Partners Against Mortality in Epilepsy (PAME) meeting in June.

Photos of our loved ones will be shown while quotes are read about what this meeting means to people living with epilepsy and to family members bereaved by epilepsy. To participate, you will need to provide a written answer to a choice of six questions. Read the invite for more information.

Fun(d)raisers

Photo: Fundraiser with Dr Donner, Tamzin Jeffs, Dave Fawcett, Deb Fawcett

Have a fundraising idea for the campaign? Deb and Dave Fawcett raised $20,000 with a skiing, snowboarding & snowshoeing event in memory of their 15-year old daughter, Jordan, who lost her life to SUDEP.  Email us your ideas!

Get Involved

Help us Make Sense of SUDEP - Learn more about SUDEP and read here about the ways you can help.