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Welcome

November is Epilepsy Awareness Month in the US! Let us know what you are doing to raise awareness for epilepsy and SUDEP. We encourage you to distribute the campaign eBrochures to People with Epilepsy; Young Adults and Teens; People Bereaved by Epilepsy; and Healthcare Providers. You can email them, or print them out in tri-fold or standard page format. Do keep us informed of your efforts, via our Facebook page, and encourage your friends to do the same. 

The SUDEP eBrochures are being well received and we are grateful to each and every one of you involved in helping to widen their reach across North America. We'd particularly like to thank UCB Canada and their sales team. Also, the Danny Did and Chelsea Hutchison Foundations for distributing the eBochures. The more people know about SUDEP, the more we can do to prevent it.

A reminder, about the call for volunteers to help SUDEP research in June's eNewsletter, that spaces are limited. Get in touch soon to avoid disappointment. You can also help by forwarding research information to families living with, and bereaved by, epilepsy.

Thank you to all our partners and friends for working with us, for sharing your stories and for talking about SUDEP.

Tamzin Jeffs & Cyndi Wright, MSOS campaign

SUDEP news from Dr. Donner

Dr. Elizabeth Donner discusses the relevance of the findings in her SUDEP survey of Canadian pediatricians and the vital role of pediatricians in raising awareness of SUDEP.

SUDEP mythbusting

Photo: Dr. Rajesh RamachandranNair

Dr. Rajesh RamachandranNair helps to debunk the myth: 'People with epilepsy do not want to know about SUDEP'.

In this new regular feature, aimed at reducing misinformation about SUDEP, we invite epilepsy professionals to examine common epilepsy-related myths.

If you have an epilepsy-related myth suggestion that you'd like to submit, please email us

SUDEP information online

New information and resources, recently made available on the web:

  • SUDEP webinar, presented by Dr. Jeff Buchhalter
  • Prevention of SUDEP, newsletter article by Dr. Orrin Devinsky
  • Disclosure of SUDEP, Hallway Conversation between Professor of Neurology Dr. Joseph Sirven and neurologist Dr. Nancy Collins 
  • A Sudden, Scary Side to SUDEP, interview between neurologist Dr. Andrew Wilner and the first Partners Against Mortality in Epilepsy (PAME) conference co-chairs Dr. Jeff Buchhalter and Gardiner Lapham [note, free Medscape sign-up required to access]

SUDEP eBrochures en francais

Photo: eBrochure Cover en Francais

SUDEP eBrochures are currently available in English, both in tri-fold and standard page format.

They have been translated for French speaking members of the community and will be online for download and distribution from mid-November. They provide renseignements pour:

  • Les personnes épileptiques
  • Les jeunes adultes et les adolescents atteints d’épilepsie
  • Les personnes endeuillées par le décès d’un proche atteint d’épilepsie
  • Les fournisseurs de soins de santé

eBrochures will next be made available in Spanish. To keep updated with progress,  sign up to receive our eNewsletter.  

Getting involved

Want to make an early start on your Xmas shopping, with the added bonus of knowing a contribution to the campaign is made with every purchase you make? Order your Arbonne products today (US & Canada), or enjoy some pampering and party fun in Ontario (Nov 17th & Dec 7th). Contact Erin for more details.

Want to have your say in what families need from the next Partners Against Mortality in Epilepsy (PAME) conference? 2014 planning is underway. Your input is vital. Contact us with your thoughts and ideas.

Want to make a tax deductable donation to the campaign before year end? Tax receipts are now available for both US and Canadian residents.

A story shared

Photo: Evan Bayko

Corine Heim, who lost her 19 year old son, Evan Bayko, to SUDEP last year shares her story and her message for parents of children living with epilepsy.

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

Words of comfort

During this month of heightened efforts to raise awareness of epilepsy and SUDEP, we remember the families that have lost a loved one to epilepsy. The devastation it brings and the unpredictability of grieving can be isolating and worrying. Some shared thoughts, written by an anonymous author, may help to put into words the feelings which are so hard to express. They may also give valuable insight to friends and family feeling guilty for not understanding, knowing how to behave or being able to relate. Forward the words on, and help bring some comfort to grieving families during Epilepsy Awareness Month.