Epilepsy Foundation Announces Final $1 Million Challenge to Identify Biomarkers Predicting Sudden Unexpected Death in Epilepsy (SUDEP)

$75,000 Awarded During the Third Challenge Phase to Five Medical Researchers

Landover, MD (August 10, 2016) - The Epilepsy Foundation SUDEP Institute announced the winners of its third challenge, “Predictive Biomarkers of Epilepsy Seizures.” This was the third of four challenges that will ultimately award nearly $1.2 million in prizes.

SUDEP (sudden unexpected death in epilepsy) is the leading cause of death in young adults with uncontrolled seizures. Anne and Jim Render learned about SUDEP after they lost their 24-year-old son Ian in 2014. Prior to his death, they did not receive any information about the risk of SUDEP and as a result they were unable to take action. The Render Family is committed to making sure that other families are fully aware of the potential risks and understand how to take immediate action.

“Ian always believed that the road to success isn’t always perfect, but the important thing is how you overcome the challenges,” said Anne Render. “We support the SUDEP Biomarker Challenge. While we wish our son was here with us today, we know he would want us to commit to driving research that can predict SUDEP and prevent this horrible tragedy for others.” Both Anne and Jim are also supporters of the SUDEP Institute’s Biomarker Challenge.

Among those living with epilepsy, nearly one-third have ongoing seizures despite existing therapies. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled, the risk of SUDEP increases to more than 1 out of 150.

“It is people living with seizures, like my son, who will benefit from finding a biomarker that can prevent SUDEP,” said Bob Smith, chair of the Epilepsy Foundation Board of Directors and also a supporter of the challenge. “Knowing my son can die from epilepsy can be scary, and I want to do all I can to keep him safe.” Other supporters of the SUDEP Institute’s Biomarker Challenge include CURE, FACES, UCB, and several families.

The SUDEP Institute worked with InnoCentive, Inc., to challenge Solvers to propose a predictive biomarker or panel of biomarkers to identify people at risk for SUDEP. The biomarker(s) serve as an endpoint or surrogate endpoint that will drive human SUDEP interventions. Over 400 participants registered for the challenge, and they submitted 48 solutions from 22 countries.

Five solutions were each awarded $15,000.

• João Ferreira from Portugal proposed using cortisol levels to predict SUDEP and seizures that compromise cardiac or respiratory function.

• Dr. Dorian Aur from Canada recommended the assessment of data from multiple systems in the body that may identify risk markers.
• An American team composed of Jeffrey McDonald, Patrick Luckett, and Dr. Lee Hively suggested the development of a new seizure prediction algorithm coupled with a small portable EEG sensor to predict seizures.
• Dr. Kelly Clancy from Switzerland described using a method to measure oxygen in the blood to identify risk based on correlation with EEG and EKG measurements.
• Carolina Ciumas, MD, PhD, also from Switzerland, proposed the use of structural and functional MRI imaging of the brainstem a predictor of SUDEP risk.

Dr. Samden Lhatoo, a reviewer for the SUDEP Challenge Initiative, said, “As a lead investigator of the Center for SUDEP Research, it is exciting to see new investigators bringing innovative ideas forward to help us find a way to predict and prevent SUDEP.”

The fourth and final challenge, worth $1 million, will be to prove the biomarker can predict the risk for SUDEP and serve as an intervention for seizures that compromise cardiac or respiratory function. The final challenge opened on August 9, 2016, and the entry deadline for the first milestone is October 10, 2016. The challenge will present up to 10 awards from a pool of  $100,000. The second milestone will give up to 4 awards of $25,000 each. The final award will be at least $800,000 for the successful completion of the final milestone. Learn more about each milestone requirement and the schedule at www.epilepsy.com/sudep-challenge-initiative.

"We are excited to use the prize challenge format to help meet our mission of saving lives,” said Brandy Fureman, vice president of research and new therapies for the Epilepsy Foundation. “The ideas presented in the first phase of the challenge are very promising, and we are eager to see the results after the Solvers put their theories for preventing SUDEP to the test.”

Anyone can be a part of the $1 million solution. Learn more about the challenge, including how to enter and promote it, at www.epilepsy.com/sudep-challenge-initiative or donate toward the over $1 million prize.

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Media Contact: LeAnn Harley | lharley@efa.org | 301.918.3721

About Epilepsy and SUDEP

When a person has two unprovoked seizures or one unprovoked seizure with the likelihood of more, they are considered to have epilepsy. Epilepsy affects 3 million people in the U.S. and 65 million worldwide. This year, another 150,000 people will be diagnosed with epilepsy. Despite all available treatments, 3 out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control. SUDEP is the leading epilepsy-related cause of death; each year in the U.S., SUDEP kills more than 3,000 people with epilepsy. For more information on Epilepsy and SUDEP.
 
About the Epilepsy Foundation

The Epilepsy Foundation, a national non-profit with nearly 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit epilepsy.com.

“Like” the Epilepsy Foundation on Facebook at facebook.com/epilepsyfoundationofamerica and follow us on Twitter at twitter.com/epilepsyfdn.

About the Epilepsy Foundation SUDEP Institute

The SUDEP Institute is an initiative led by the Epilepsy Foundation that carries out SUDEP education and awareness programs for people affected by epilepsy and for medical professionals; drives and supports research into the causes of and ways to prevent SUDEP; offers a support network providing counseling, community, and resources for individuals and families affected by SUDEP; and works together with many epilepsy organizations to find the answers to SUDEP. For additional information, please visit epilepsy.com/sudep-institute.