Facebook icon Twitter icon Forward icon

Welcome

Great news!  Purple Day is now a legally recognized day for epilepsy awareness in Canada!

This comes just days after the excitement and huge success of the Partners Against Mortality in Epilepsy (PAME) conference in Chicago last weekend.

Researchers, pathologists, healthcare providers, people living with, and families bereaved by, epilepsy met together in the first meeting of its kind to discuss mortality in epilepsy. It proved extremely productive and generated much useful information, discussion, enthusiasm and collaboration.

At the opening ceremony, the Making Sense of SUDEP team presented its short video that captured the stated hopes and expectations for the outcome of the conference, of those affected by epilepsy.

This event reminded us that 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

Logo: PAME

Dr. Elizabeth Donner updates us with cutting-edge research findings reported at the recent PAME conference in Chicago.

IOM report addresses SUDEP

Photo: Report cover

The Institute of Medicine (IOM) Committee’s report, Epilepsy Across the Spectrum: Promoting Health and Understanding, describes its vision for a better understanding of the public health dimensions of epilepsy and promoting health and understanding. This includes a variety of efforts related to mortality and SUDEP and the improvement of surveillance and prevention as well as increased education.

Read the recommendations relating to SUDEP or view the complete report.

Alternative eBrochure format now available

Photo: eBrochure cover

In addition to the campaign's downloadable tri-fold eBrochures, mentioned in the last issue, each of the four brochures is now also available in standard page format

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.

Volunteers needed - help SUDEP research

Can YOU help new research into SUDEP with information about your own experiences?

People with epilepsy and relatives bereaved by epilepsy are needed for essential research into the best way to inform patients about SUDEP.

If you are over 16 years old with new onset epilepsy or medically refractory epilepsy OR have lost a close relative (spouse, sibling, parent, child) older than 16 years old due to presumed SUDEP, the investigators would value your participation in this important research.

Bracelets in support

Photo: Campaign bracelets

Campaign bracelets are now available, debossed with or without white ink, at CAD$1.30 plus shipping.  Email us to order yours and support the campaign!

T-shirts in support

Photo: C4O t-shirt

Read all about a Father's planned, 6-day, 500km, Cycle for Olly from London, Ontario to Toronto, Ontario next month.

Support the campaign and buy your t-shirt now!

Come out and cheer the cyclists on at the six start-points along the route.  We hope to see you there!

A story shared

Photo: Adrian Webley

Jennifer Webley, who lost her husband Adrian to SUDEP, openly shares her story and her belief in the importance of raising awareness of SUDEP and the need for more research.

To add your story (500 words maximum), please email us. You are welcome to also include photos.

Fun(d)raisers

Photo: Erin Korslick

A very Slick 4-hour marathon

A BIG thank you to Erin Korslick (Slick) for her huge effort raising funds for the Making Sense of SUDEP campaign!

Read about her motivation to complete the 42km run and what it meant to her.

Contact us with YOUR fundraising ideas and let's get busy!