SUDEP Educational Resources:
- CDC Epilepsy self-management programs
- Toolkit for preventing epilepsy deaths
- Seizure monitor or device
- List of questions to ask health care providers
- Seizure first aid
- 14 questions from caregivers of children living with epilepsy
Important organizations that address SUDEP and offer support:
- CURE Epilepsy
- Danny Did Foundation
- Epilepsy Foundation
- CDC
- Child Neurology Foundation
- Seizure Tracker
Suicide prevention and support resources:
Prevention Resources:
- Suicide Prevention Resource Center
- National Suicide Prevention Hotline: 1-800-273-8255
Support groups and other resources for survivors:
Mental health resources:
- Understanding the connections between mental health and epilepsy: PAME presentations by Dr Madison Berl and Dr Heidi Munger Cleary in “Navigating psychological impacts of Epilepsy”
- The goal of Project UPLIFT is to empower people with epilepsy to improve their own mental health through mindfulness and cognitive-behavioral skills.
Reducing mortality risk:
- The Pediatric Epilepsy Surgery Alliance provides data showing Epilepsy Surgery Saves Lives and the Stop the Delay information educates families on barriers to epilepsy surgery for patients with medically refractory epilepsy.
Additional resources:
Thank you to the Epilepsy Foundation for compiling these recommendations.