#AimForZero

The Epilepsy Foundation SUDEP Institute, comprised of leading epileptologists and epilepsy organizations, is urging people living with epilepsy and their caregivers to aim for zero sudden deaths from epilepsy and seizures by adopting and practicing four key actions:

  1. Take medication as prescribed
  2. Get enough sleep
  3. Limit alcohol
  4. Strive to stop seizures

Healthcare providers must also be part of the effort to raise awareness about the risks of having seizures and SUDEP and help people living with epilepsy take action to reduce these risks.

Social media platforms offer people living with epilepsy and the people caring for them opportunities and forums to discuss important issues about how to achieve a life without seizures and reduce their risks for SUDEP. For these reasons, the SUDEP Institute has launched the hashtag #AimForZero — encouraging those active on social media to use the hashtag while discussing SUDEP, the importance of seizure control, and the four key behaviors to reduce risk.

Supporting Organizations

Danny Did Foundation

 

SUDEP Action

 

The #AimForZero campaign was funded in part by a grant from Lundbeck.

Lundbeck

Background

The #AimForZero campaign and Special Report was based on published research studies, an online survey of more than 1,000 people with epilepsy and caregivers, and interviews with the following leading epilepsy specialists:

  • Orrin Devinsky, MD, Professor of Neurology at the New York University (NYU) School of Medicine and Director of the NYU Langone Comprehensive Epilepsy Center and North American SUDEP Registry
  • Jacqueline French, MD, Chief Scientific Officer for the Epilepsy Foundation and Professor of Neurology at NYU
  • Dale C. Hesdorffer, PhD, Professor of Epidemiology at Columbia University
  • Samden Lhatoo, MD, Professor, Neurology, Case Western Reserve University School of Medicine
  • Philippe Ryvlin, MD, PhD, Professor of Neurology, Lyon University, France
  • Joseph Sirvin, MD, epilepsy.com Editor-in-chief and Professor of Neurology and Chairman of the Department of Neurology, Mayo Clinic, Arizona
Authored by: The Epilepsy Foundation SUDEP Institute on 9/2016
Jacqueline French
Expert Insight

What is the Devastating Impact of SUDEP?

"Every death from SUDEP is a tragedy that resonates through the epilepsy community and creates a sense of fear about the future. Over time we have come to understand that for many people this fear may be among the most difficult aspect of having epilepsy. The best way to reduce and ultimately eliminate SUDEP is for people to be as honest as possible, so that their physician can create the best possible plan for each individual person that increases their likelihood of 100 percent compliance with medication. Every person with epilepsy should continue to seek the best care and continually take a journey toward the best seizure control that they can achieve."

— Jacqueline French, MD