Why We Need to Act Now
- Three million people in the U.S. and 65 million people worldwide have epilepsy, a neurological condition that affects the nervous system and causes seizures.
- One in 26 people in the U.S. will develop epilepsy at some point in their lifetime, with 150,000 new cases annually.
- 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 sudden unexpected death in epilepsy (SUDEP).
- If seizures are uncontrolled, the risk of SUDEP increases to more than 1 out of 150.
- SUDEP is the leading cause of death in young adults with uncontrolled seizures.
SUDEP Challenge Offers more than $1 Million in Prize Money for Challenge Winners
One way the Epilepsy Foundation SUDEP Institute is meeting these needs is with a series of four multidisciplinary prize challenges.
- The first challenge sought creative and viral advocacy campaign(s) to inform and educate people with epilepsy, families, and the health care community about SUDEP.
- The second challenge asked solvers to develop an intervention to help people with epilepsy comply with treatment plans and decrease their risk of seizures.
- In the third challenge, solvers proposed a predictive biomarker or panel of biomarkers to identify people at risk for SUDEP.
Identifying biomarkers to predict SUDEP represents a major unmet medical need. Although there are several theories about the causes of SUDEP, who is at risk of dying from epilepsy and how to prevent it remains a mystery.
There are few interventions that reliably predict and prevent SUDEP in people with epilepsy. Therefore, the Epilepsy Foundation SUDEP Institute desires the development of clinically relevant, specific, and sensitive biomarkers of SUDEP and near-SUDEP to facilitate the development of a therapeutic intervention for people at high risk for SUDEP or life threatening seizures.
Milestone 1 of the fourth and final challenge required a detailed project plan for the proposed solution for finding a predictive biomarker or panel of biomarkers to identify people at risk for SUDEP or seizures that compromise cardiac or respiratory function. Learn more about this milestone and the winners.
The Fourth Challenge has two remaining milestones:
- Milestone 2 will close on October 10, 2017, and involves the production of proof-of-concept data. The SUDEP Institute will make up to four awards of $25,000 each for Milestone 2. Winners will be invited and supported to present their submissions and findings at the 2018 Epilepsy Foundation Pipeline Conference in San Francisco, California, in February 2018.
- Milestone 3 requires results that demonstrate the predictive efficacy of the biomarker(s). Milestone 3 is a race to the finish and submissions will be accepted between October 17, 2017, and October 20, 2020. Submissions will be reviewed as they are received, and, at the discretion of the SUDEP Institute, the first submission that meets all challenge criteria will be awarded the prize. The SUDEP Institute intends to make a final award of at least $800,000 for successful completion of Milestone 3.
Solvers can register and join the Fourth Challenge at any time! Participation in the previous milestones is not required.
Challenges 1, 2, and 3
With the help of our partners at InnoCentive, all of the challenges allow us to take advantage of interdisciplinary approaches and alternative perspectives. Through combining and contrasting ideas, the best and most valuable solutions will be identified and financially supported.
Challenge 1: Empowering People with Epilepsy
Launched June 10, 2015; Closed July 13, 2015
Solvers were asked to create an advocacy campaign to encourage people with seizures and epilepsy to seek optimal seizure control and to educate themselves and their families about SUDEP and how they can mitigate its risks. In addition, the challenge asked solvers to invite the broader health care community to talk about SUDEP, understand the importance of not accepting ongoing seizures, and pursue all effective treatment options.
More than 300 people registered and 90 solutions were submitted from entrants in more than 50 countries. Solvers included people living with epilepsy, bereaved family members, doctors, nurses, communications experts, and many more.
$10,000 was awarded to Chad Spencer of Smithfield, Utah.
"I chose to participate in this challenge because of the opportunity to possibly help someone improve the treatment of their epilepsy," said prize winner Chad Spencer. "It made me think about how to get people to talk about epilepsy, and that leads to what can be done about it."
$2,500 prize was awarded to a team comprised of Jenna Brooks of Alexandria, Va., and Lizzette Vidal-Alicea of Fairfax, Va.
"My grandmother suffered from moderately controlled, tonic-clonic seizures, so the challenge is very near and dear to my heart. She passed away very unexpectedly and my family is still uncertain as to the root cause of her death," said prize winner Jenna Brooks. "I felt inspired by this challenge, because I believe that if my grandmother had a greater awareness of SUDEP, seizure risks and prevention measures, regular access to resources and tools, and a support network of individuals who were also living with epilepsy, it would have improved her quality of life and quite possibly could have saved her life."
$2,500 prize was awarded to a team with six members: Mackenzie Beer and Steven Ebert of Richmond, Va.; Candace Faircloth of Virginia Beach, Va.; Scott Menzie of Waynesville, N.C.; Sunny Sun of Berkeley, Calif.; and Eden Mesfin of Concord, Calif.
"I’ve never felt more helpless than I did when I saw someone I love have a seizure. There’s not much that anyone can do in that moment," said prize winner Mackenzie Beer. "But we believe a huge degree of danger lies in not being able to talk about it afterwards. We hope this campaign provides an accessible language to talk about it. We hope it arms people with a tangible and immediate way to understand what’s happening during a seizure. We hope it illuminates a place where people can turn to if they ever need support."
Challenge 2: Preventing Epilepsy Seizures
Launched August 14, 2015; Closed October 13, 2015
A widespread lack of awareness and ongoing fear and discrimination lead many individuals to hide their epilepsy and to accept ongoing seizures instead of seeking out more effective treatments. Many individuals with epilepsy may not achieve maximal seizure control because of not understanding the seriousness and risk of seizures, lack of access to best therapies, poor adherence to prescribed therapies, or lifestyle factors that may provoke seizures.
Solvers were asked for a method or intervention to reduce the risk of seizures, especially convulsive or tonic-clonic seizures, with the purpose of preventing SUDEP. Over 300 solvers registered for the challenge, submitting 83 solutions from 25 countries.
The Epilepsy Self Monitoring (EpSMon) mobile app was the winning solution for the second challenge, “Preventing Epilepsy Seizures.” This app was designed to help people with epilepsy monitor epilepsy activity between doctor visits, determine if they are at risk of a seizure, and give information on how to decrease their risk.
“People living with epilepsy rely on tools like EpSMon to help monitor seizure activity,” said Philip M. Gattone, CEO and president of the Epilepsy Foundation. “EpSMon also reminds users of the importance of following their treatment to help avoid potentially tragic consequences.“
We are excited to work with the EpSMon partners: Plymouth University in collaboration with SUDEP Action, Cornwall Foundation Trust, and Royal Cornwall Hospitals NHS Trust to bring this powerful tool to the U.S. iTunes and Play stores.
Challenge 3: Predictive Biomarkers of Epilepsy Seizures
Launched February 25, 2016; Closed May 24, 2016
Solvers were asked to propose a predictive biomarker or panel of biomarkers to identify people at risk for SUDEP. The biomarker(s) must serve as an endpoint or surrogate endpoint that will drive human SUDEP interventions. For example, the biomarker(s) may identify a high-risk patient group that could be used to test existing candidate interventions such as seizure detection devices in a clinical trial.
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.
“I realized that this was the opportunity to not only prevent SUDEP, but also to provide more independence to patients,” João Ferreira explained. “So I focused on a solution where both doctor and patient could assess the risk of SUDEP. This should create self-awareness and mitigate patient’s anxiety in addition to SUDEP prevention.”
Dr. Dorian Aur from Canada recommended the assessment of data from multiple systems in the body that may identify risk markers.
When asked why he focused on his particular solution as a method to prevent SUDEP, Dr. Aur told us, “Reliable predictions of seizures and SUDEP are a matter of life and death for many people with epilepsy. [The challenge] was a new theoretical development regarding the occurrence of seizures that revealed a biophysical mechanism directly involved in seizure generation. Dangerous seizures often appear to be unpredictable events, and I strongly feel that moving forward with a reliable solution will allow us to prevent such events.”
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.
“My wife and I have a friend whose daughter has suffered with epilepsy for decades. Medications have not helped her much, and she is not a suitable candidate for epilepsy surgery,” said Dr. Hively. “I realized in 1994 that a much better solution is forewarning of an impending epileptic event. I obtained funding to analyze scalp brain-wave data. By the time I retired in 2014, I had obtained 10 U.S. patents on event forewarning from such data. Since my retirement, I've continued working on the problem, and now have further improvements, which were sketched in our InnoCentive proposal.”
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.
“My father is a pediatric neurologist who specializes in epilepsy. It's a disease I've been in contact with and thinking about since I was a child,” said Dr. Clancy. “Sometimes my father's patients, children my age just like me, would die unexpectedly, and it was very shocking, very heartbreaking, and mysterious. I've always wanted to help solve this mystery.”
- Carolina Ciumas, MD, PhD, also from Switzerland, proposed the use of structural and functional MRI imaging of the brainstem as a predictor of SUDEP risk.