When Victor and Libby Boyce lost their 20-year-old son Cameron to SUDEP (Sudden Unexpected Death in Epilepsy Patients) in 2019, his death was a tragic and devastating shock. A young actor with a rising career, credited with films such as Adults 2 and Disney’s Descendants franchise, Cameron left an unfathomable void in the hearts and minds of all who knew him.
And while that complaint can never be cured, Cameron’s father Victor and the entire Boyce family can move forward because they have a passionate desire to raise awareness of SUDEP. Graciously empowered by a therapeutic relationship with competitive cycling, Victor boldly shares the family’s mission in conversation with M&F.
In the United States, 1 in 26 people live with epilepsy. Of these sufferers, it is estimated that more than 1 in 1,000 will die from it SUDEP, yet too many people are unaware of the risks. Cameron had only 5 seizures in his life between the ages of 17 and 20. “Prior to his first seizure, he had no symptoms, except when he had convulsions as an infant. Cameron rarely got sick,” explains Victor. “When he had his first seizure, we weren’t sure what had happened until the doctor explained. It was confusing and surprising in the worst way.” Seemingly under control after his epilepsy diagnosis, his seizures were spaced about a year apart. “Not only was Cameron not sick, but he was thriving in his life and career,” says Victor. “We were completely blindsided by his death because he was so healthy.”
What is epilepsy?
Epilepsy is a brain condition that causes bursts of electrical activity, resulting in seizures. It is a love that can begin at any age, but usually begins in childhood or in those people who are older than 60 years. Symptoms include involuntary shaking, also known as a “seizure.” If you think you are having a seizure, it is important to seek medical advice. Although there are treatments available to help control epilepsy in many cases, SUDEP is still not fully understood.
The Cameron Boyce Foundation works to treat epilepsy
Very soon after his death, the Boyce family started a foundation in Cameron’s honor. “It was originally a continuation of the charity work that Cameron was already doing on his own,” says Victor. “We didn’t want it to end with his death. It was difficult in the beginning for many reasons, not the least of which was that we had no idea how to run a foundation. It’s been a steep learning curve, but now we have a strong team and a clear focus on what we want to achieve. We are small compared to other well-established epilepsy foundations, but we have a unique platform because Cameron is so loved. Our main goal is to raise epilepsy awareness and research.”
Since its inception, the TCBF (Cameron Boyce Foundation) has raised over $1 million and is bringing much-needed attention to an often-overlooked disease. “We are truly blessed to have the support of young adults who grew up watching Cameron on TV and in the movies. They are our main fans. Notable people who have helped us include Adam Sandler, Sofia Carson, Dove Cameron, Salma Hayek, Maz Jobrani, Wendy Raquel Robinson and many, many others,” says Victor. TCBF has also partnered with CURE Epilepsy to fund research grants, helping scientists in their quest to cure and control all forms of epilepsy.
Victor Boyce gets ‘daily therapy’ through cycling
“My son was born with a magnetism that is hard to describe in words,” says Victor. Working with the TCBF is an important but understandably difficult job for the grieving father, but thankfully he was able to rely on his love of cycling to get some mental and physical relief. “As a kid, I got my freedom by going out on my bike. You can travel much further by bike than by walking. As an adult, it’s more of a daily therapy,” he shares. “A lot of people think cycling is ‘exercise’ but for me it’s more mental. Cycling clears my mind of life’s stress. Cycling pushed me out of my comfort zone to do things I previously thought were impossible. For example, in 2020 I amassed over 1,000,000 vertical feet of ascent in one year. As daunting as it sounds physically, what’s harder is mental strength and commitment.”
Victor really found his rhythm in cycling. “I ride with a large group of men and many of us compete in organized races and events,” he explains. “Last year I was part of a four-man team that won an eight-hour, cross-country, marathon mountain bike race. We also organize gravel bike events like the ‘Rock Cobbler’ which is brutal! Adrenaline and dopamine are strong motivators for getting out and moving. When you feel better, your mood improves which in turn helps your relationships with family and friends. When you’re in shape, you’re more confident and feel more comfortable in your own skin.”
Finding solace and companionship through cycling was a major distraction for Victor. “It’s interesting how small the cycling community is,” he explains. “Most of the people I ride with are friends of friends. Some are my neighbors, and many others are people I’ve put on Strava. It was very organic and some of the people I met became dear friends. Recently my wife and I and four other couples went on a cycling trip to the Netherlands. It was the trip of a lifetime.” For Victor, meaningful conversations are also key to his work with TCBF. “I encourage those with epilepsy to talk about it,” he says. “Train yourself in first aid/CPR, arm yourself with knowledge, visit TheCameronBoyceFoundation.organd be supportive of the epileptic community.”