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:
- Take medication as prescribed
- Get enough sleep
- Limit alcohol
- 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.
The #AimForZero campaign was funded in part by a grant from Lundbeck.
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