MAKING SENSE OF SUDEP (Sudden Unexpected Death in Epilepsy) Awareness Campaign

1 in 100 people have recurrent seizures, or ‘epilepsy’ 1 in 1000 people with epilepsy die from SUDEP each year The cause of SUDEP remains unknown The majority of people living with epilepsy, their families and caregivers are unaware of SUDEP. Most families first come to learn of it from the coroner or pathologist investigating the death of their loved one. Awareness is important to enable people with epilepsy and their caregivers to consider all the facts and make fully informed decisions.  It’s time to take action and Make Sense of SUDEP.  We need to: Increase awareness and understanding of SUDEP Ensure accurate information is publicly available Encourage discussion of mortality in epilepsy Champion the need for increased resources towards research and support Improve the identification of SUDEP deaths Generate action in support of the campaign to bring about change

The ultimate goal is to prevent further SUDEP deaths. What is SUDEP? SUDEP refers to the sudden death of a person with epilepsy where no cause is found at autopsy. People with epilepsy who have frequent convulsive seizures appear to be most at risk. The first step in solving a problem is to acknowledge it exists; the more we know about SUDEP, the more we can do to prevent it. “Awareness is the first step in understanding the cause and prevention of SUDEP. If we can't identify cases we can't learn anything about them. Through advocacy and research we can save lives." Dr. Elizabeth Donner, Pediatric Neurologist and researcher at Toronto’s Hospital for Sick Children and Co-founder of SUDEP Aware.