Leadership in SUDEP
The NIH now funds nearly $20M annually in SUDEP research. Leaders at the NIH credit CURE Epilepsy’s early, modest projects as the initial spark that generated exponential interest and investment at the federal level. That is the type of foundational impact that CURE Epilepsy has year over year.
CURE Epilepsy is unwavering in our commitment to end SUDEP.
SUDEP is one of the most devastating but least talked about consequences of epilepsy. Every year it impacts over 1 in 1,000 people living with epilepsy (Sveinsson et al. 2020 Neurology), and countless more when you consider these individuals’ families and friends who suffer untold grief and sadness from the loss of a loved one.
In response to this unacceptable loss, CURE Epilepsy, with the assistance of many parents who were seeking answers, launched the first-ever private research program dedicated to advance the understanding SUDEP and its prevention in the US.
Established in 2004, our cutting-edge SUDEP program impacts include:
- Elevating physician and patient awareness of SUDEP
- Funding research that helped identify a SUDEP biomarker and the development of a seizure alarm that could potentially prevent SUDEP
- Helping to establish respiratory arrest as a leading cause of SUDEP
- Revealing the link between SUDEP and genes found in both the brain and the heart
- Funding four SUDEP registries and multiple animal models of SUDEP in both the US and Canada
- Helping establish generalized tonic-clonic seizures as a clear risk factor for SUDEP
- Supporting the passing of SUDEP reporting legislation in several states
“CURE Epilepsy’s contribution to understanding the risk of sudden death in epilepsy has been early, sustained, and transformative. From a handful of case reports 20 years ago to over 200 scientific publications in 2021, CURE Epilepsy’s support of individual investigators provided the engine to develop advanced basic and clinical collaborators. We all owe CURE Epilepsy our gratitude for its continuing leadership in accelerating this effort.”
Jeff Noebels, MD, PhD Baylor College of Medicine
current sudep work
SUDEP Risk Prediction Project
In third quarter of 2024 we are embarking on a nearly $1M project that will harness the power of big data to work towards identifying risk predictors for SUDEP. The end goal is to take those predictors and translate them into a tool that will help physicians talk to their patients about tangible steps to mitigate risk.
SUDEP Data Standardization Project
During the 2020 SUDEP Coalition Summit, which brought together key stakeholders to provide a roadmap for action towards the ultimate goal of ending SUDEP, the need for tools and methods to better characterize and understand the clinical relevance of SUDEP laboratory models was identified. In 2022, the SUDEP Data Standardization Project was initiated to fill this need, providing a standardized data collection and reporting language to help preclinical researchers characterize and understand SUDEP animal models, with the aim of improving translation of laboratory models to the clinical setting. This effort is generously supported by the BAND Foundation.
Key Milestones in Our SUDEP Research
SUDEP-Focused CURE Epilepsy Discoveries
