Every year, 1 in 150 people who have uncontrolled seizures dies from Sudden Unexpected Death in Epilepsy (SUDEP). It is the leading epilepsy-related cause of death.

SUDEP Resources & Tools

“Understanding Your Child’s Risk for SUDEP: Your Child’s Current Risk is Low, But it is Important to Stay Informed” (Low Risk for SUDEP)*

Printable / Español

“Understanding Your Child’s Risk for SUDEP: The Need to Have as Few Seizures as Possible” (Higher Risk for SUDEP)*

Printable / Español

“Seizure Action Plan”
Printable / Fillable / Español

“School Seizure Action Plan”
Printable / Fillable / Español

*We encourage a conversation with your neurologist to determine whether the low risk or high risk SUDEP information sheet is most applicable to you or your loved one.

“Considering a Seizure Alert Device?”
Download Handout

“The SPIKES Strategy”

Download Handout

This video is part of the series Healthy Epilepsy Management, multi-part video series produced in 2021 about healthy epilepsy management focuses on what we heard from partners and families in our community as a top priority. Watch the rest of the videos here.

“Let’s talk about SUDEP: A Conversation with Parents and Doctors”

Speakers: Jeff Buchhalter, MD, PhD | Sarah Friebert, MD | Tom Stanton | Margaret Storey, PhD (Recorded November 17, 2017)

• An introduction to SUDEP, including the known causes, risk for children, how to reduce risk
• Current SUDEP research initiatives
• Strategies families can use when talking with medical providers about a child’s health risks
• The parent perspective of how to best use information about the risk for SUDEP when managing a child’s medical care
• Resources for families as they address the risk for SUDEP

Clinical Guidance on SUDEP

In April 2017, the American Academy of Neurology and the American Epilepsy Society published “Practice Guideline: Sudden Unexpected Death in Epilepsy Incidence Rates and Risk Factors” in Neurology®. As part of this effort they created a patient video as a tool to help support conversations about SUDEP.

SUDEP Research

SUDEP & Child Health Improvement through Computer Automation

CNF is working with Digital Health Solutions LLC and Greenwich Biociences Inc. to design and implement a high-tech tool, through Child Health Improvement through Computer Automation (CHICA)®. This project aims to automatically generate SUDEP risk screening during routine primary care visits. Learn more.

When we surveyed families, we learned that a majority of families wanted to discuss their child’s risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. But these conversations were only happening around 20% of the time.

With our 2018 pilot project and introduction of the CHICA support module, we saw an increase in SUDEP discussions from 21% to 46% in just six weeks. This type of change is unprecedented in SUDEP. We know the risk of SUDEP decreases by managing epilepsy well – not just through medication but with behavior changes.

CNF’s Board of Directors selected SUDEP as the topic for its 2017 symposium during the Child Neurology Society (CNS) annual meeting and Danny Did Foundation to served as a lead advocacy partner. The symposium took place on October 7, 2017 in Kansas City.

The 2017 Annual Education Initiative on SUDEP was supported by: Danny Did Foundation, Lundbeck, Greenwich Biosciences, Sunovion, and the Epilepsy Foundation. With our partners: Dravet Foundation, Finding A Cure Against Epilepsy & Seizures (FACES), Lapham Family, Tuberous Sclerosis Alliance, CURE: Citizens United for Research in Epilepsy, Dup15q Alliance, Hope for Harper, Hope for Hypothalamic Hamartomas, Lennox-Gastaut Syndrome (LGS) Foundation, Mickie’s Miracles, PCDH19 Alliance, Phelan-McDermid Syndrome Foundation (PMSF), Seizure Tracker, Supernus Pharmaceutical.