Cyndi Wright, SUDEP Institute Director
The Epilepsy Foundation is offering US$15,000 to ideas for a viral and creative advocacy campaign that helps its mission of educating the public, providing better healthcare to people with epilepsy and seizures, and preventing sudden unexpected death in epilepsy (SUDEP). We caught up with Cyndi Wright, SUDEP Institute director, to find out some more about the work of the Epilepsy Foundation and what exactly it wants to achieve with this Prize.
- Hello Cyndi, thanks for talking to us. For those not familiar with the Epilepsy Foundation and the SUDEP Institute can you tell us a bit about your work?
The Epilepsy Foundation, a national non-profit with nearly 50 affiliated organizations throughout the United States, is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure, and overcome the challenges created by epilepsy through efforts including education, advocacy, and research to accelerate ideas into therapies. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential.
To address SUDEP, or sudden unexpected death in epilepsy, the Epilepsy Foundation launched the SUDEP Institute to carry out SUDEP education and awareness programs for people affected by epilepsy and medical professionals; drive and support research into the causes of and ways to prevent SUDEP; and offer a support network providing counselling, community, and resources for individuals and families affected by SUDEP. The SUDEP Institute works together with many epilepsy organizations and experts to find the answers to SUDEP.
- Why is it so important to educate the public in general about epilepsy and seizures? How has the general lack of awareness been affecting people living with the disease?
A widespread lack of awareness and ongoing fear and discrimination lead too many individuals to hide their epilepsy. As a result, the public is not aware that 1 in 26 people will develop epilepsy at some point in their lifetime. Among those living with epilepsy, nearly one-third is not able to control their seizures with existing therapies. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP.
If people with epilepsy and their families are aware of SUDEP and in control of that information, they can take precautions to decrease their risk. That’s why we are hosting our first challenge around an awareness effort — to find an innovative way to reach all people with epilepsy, families, health care professionals, and the general public, reduce fear and misunderstanding, and provide the tools people with epilepsy need to seek the best available treatments in order to change and save lives.
- Can you tell us a bit more about sudden unexpected death in epilepsy (SUDEP), as it seems to be a fairly unknown?
SUDEP is the leading cause of epilepsy-related death. For people with poorly controlled seizures, especially convulsive seizures, the risk of dying from SUDEP is much higher: 1 out of 150 each year. No one yet knows the cause of SUDEP. We do know that SUDEP happens most often at night. SUDEP may happen when there are problems with breathing, heartbeat, and brain function after a seizure. While we don’t know the cause of SUDEP, we do know that having as few seizures as possible can decrease the risk.
- In terms of your advocacy efforts, what are the greatest barriers that you’ve found?
Many people just aren’t aware of the serious risks associated with epilepsy and many doctors do not feel comfortable talking about those risks. As a result, many people with epilepsy accept ongoing seizures instead of seeking out more effective treatments.
Another challenge is that since we do not know the cause of SUDEP or how to predict or prevent it, some doctors feel talking about SUDEP will only create anxiety for families without any benefit. The SUDEP Institute believes that this is not true, as knowledge of SUDEP empowers people with epilepsy to do everything they can to reduce their risk.
- Why did you choose crowdsourcing as a means to tackle this problem?
The SUDEP Institute believes in the power of the crowd. Not only do we believe that a prize challenge can attract a broad and diverse pool of “Solvers” from around the world that will offer new perspectives and fresh ideas, but also through the challenge itself, we are building awareness worldwide for SUDEP. We are excited to learn from what others have successfully implemented in different fields.
- What are some of the key attributes you would like to see in a winning solution?
The winning solution will bea creative and viral advocacy campaign that can reach people with epilepsy, families, the health care community, and the general public. Through positive messaging the campaign will reduce fear and misunderstanding. It will drive behavior change so people seek and doctors provide the best available treatments.
- Can you describe the impact a successful solution would have?
A successful solution will drive people with epilepsy to reduce their risk for SUDEP by taking medication as prescribed, maintaining a good and regular sleep schedule, avoiding excess alcohol, and seeking optimal seizure control by challenging their medical team to explore new treatment options. If seizures are not controlled, they will pursue care with an epilepsy specialist. People with epilepsy will not settle for a life with seizures because one seizure is too many.
Health care professionals will discuss the risk of SUDEP and how to reduce this risk, understand that seizure control means zero seizures, and continue to pursue new treatment options, including referring patients to an epilepsy specialist, until complete seizure control has been achieved.
- Any final words of advice or guidance for people wanting to enter the Challenge?
We are truly excited to launch these challenges and find a way to prevent SUDEP. More people in the US die each year from SUDEP than SIDS or fires, yet everyone knows about and discusses the risk for SIDS and fire safety. We just want the same for epilepsy and SUDEP so families can protect themselves and prevent this tragic outcome. The Solvers of this challenge will be saving lives as well as improving the lives of all people with epilepsy.