Cameron Boyce Foundation Launches New Epilepsy Initiative
The Now What campaign provides fact sheets, emotional support, and more.
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In July 2019, 20-year-old Cameron Boyce, an actor known for his roles in the Disney Channel’s Descendants films and the TV show Jessie, died from sudden unexpected death in epilepsy (SUDEP). The actor’s parents, Libby and Victor Boyce, were devastated—and dumbfounded. They had never heard of SUDEP. “When Cameron was first diagnosed with epilepsy, we had very basic knowledge, which wasn’t enough,” says Victor.
Today, the Boyces know far more about SUDEP, a rare complication of the disorder—one in 1,000 people with epilepsy die from SUDEP every year, according to statistics from the US Centers for Disease Control and Prevention. The term describes the death within minutes of an otherwise healthy person with epilepsy when no other cause is found after an autopsy. It’s unclear why it happens but most times death follows a seizure, which may have caused breathing problems, an abnormal heart rhythm, or some combination of the two.
Shortly after their son died, the Boyces established the Cameron Boyce Foundation, which aims to raise awareness about epilepsy and SUDEP, provide education and support, fund epilepsy research, and most importantly cure epilepsy. “We want to make sure that everyone who is diagnosed has as much information as possible so they can have a different outcome than Cameron did,” says Victor.
“One in 26 people has epilepsy,” says Libby, “and we don’t feel research is funded or moving forward the way it should.”
SUDEP Awareness
In its first year, the foundation launched the K(no)w SUDEP Now campaign in partnership with the Epilepsy Foundation to educate more people about SUDEP and what can be done to prevent it.
“We heard from so many people with epilepsy who went to their doctors and said, ‘I heard Cameron Boyce died from SUDEP, what are my chances of that?’” says Libby. “That campaign was about getting one person to tell another person, to tell another person, and so on.”
People with uncontrolled or frequent seizures, tonic-clonic seizures (characterized by convulsions and a loss of consciousness), or seizures at night tend to be at a higher risk of SUDEP, says Jeffrey R. Buchhalter, MD, FAAN, a pediatric epileptologist and adjunct professor at the University of Calgary in Canada. So are those who’ve had epilepsy for many years or who’ve started having seizures at a young age as well as people who miss doses of medication or drink alcohol. “In the last several years we’ve come to realize that SUDEP likely has multiple causes, including heart problems,” says Dr. Buchhalter.
Even someone who has had very few seizures can die of SUDEP, says Dr. Buchhalter. “Cameron Boyce is an unfortunate perfect example.”
Managing the condition starts with expert consultation, he adds. “It is really important for patients to work with their providers to understand what kinds of seizure they are having, the potential causes, and any possible outcomes. The provider must go through all the possibilities—including SUDEP—with the patients and their families.”
“So many people don’t know what to do after they’re diagnosed,” says Libby. Dr. Mehta agrees. “That’s why it’s so important to have a thorough evaluation and workup with a specialist. Patients may not know if they are having a problem. These patients need doctors who are experts at treating epilepsy.”
Looking Ahead
The foundation’s latest initiative, Now What, focuses on reducing stigma, providing important management information, and suggesting questions to ask doctors to get the best treatment. The initiative is in partnership with Hoag, a not-for-profit regional health care network in Orange County, CA, and Vivek Mehta, MD, a neurosurgeon and surgical director of the Hoag Comprehensive Epilepsy Program in Newport Beach, CA, who is on the board of The Cameron Boyce Foundation. “So many people don’t know what to do after they’re diagnosed,” says Libby. Dr. Mehta agrees. “That’s why it’s so important to have a thorough evaluation and workup with a specialist. Patients may not know if they are having a problem. These patients need doctors who are experts at treating epilepsy.”
The Now What campaign provides fact sheets, emotional support, video content, information about level 4 epilepsy treatment centers—which are accredited by the National Association of Epilepsy Centers and provide a coordinated team of epilepsy specialists, the most advanced epilepsy surgery services, and specialized epilepsy monitoring units—directories, and more. The initiative also includes a Facebook support group, which has close to 500 members so far.
Dr. Buchhalter urges patients to research all available treatments. “We focus on getting as close to zero seizures as possible, but quality of life is also very important,” he says. “If patients are seizure free but their medication causes them to feel zoned out all the time, that is not an adequate solution. That is when their doctors should suggest another medication or possible surgical or dietary options.”
Support for a Cure and the Community
Funding research is key for the foundation. “One in 26 people has epilepsy,” says Libby, “and we don’t feel research is funded or moving forward the way it should.” To address that, the Foundation and CURE Epilepsy established the CURE Epilepsy Cameron Boyce SUDEP Research Award, a grant of $250,000 that was awarded in January 2022 to Dr. David Auerbach, associate professor of pharmacology at SUNY Upstate Medical University in Syracuse, to further his research into SUDEP.
The foundation’s new goal is to improve access to epilepsy care, especially for people of color. “We are looking at ways to spread the message and engage communities of color,” says Libby.
For more information about epilepsy and treatment options, visit our epilepsy disorders page.
