Photographer: Larry Hirshowitz (images of Libby & Victor)
Photographer: Storm Santos (images of Cameron)
Victor and Libby Boyce established The Cameron Boyce Foundation (TCBF) in July 2019 after their son, actor Cameron Boyce, died in his sleep from an epileptic seizure due to SUDEP (Sudden Unexpected Death in Epilepsy Patients).
In just three years, TCBF has raised more than $1 Million towards epilepsy research and to further awareness of the disease.
Around 1 in 26 people are living with epilepsy – which is approximately 3.4 million people in the US alone. Yet it’s a disease that lurks in the shadows compared to others, and 1 in 1000 individuals will die each year from SUDEP.
The Cameron Boyce Foundation is on a mission to empower others who suffer from seizures by providing valuable information, research and resources, and hopefully, one day, end epilepsy and SUDEP.
We spoke to Victor and Libby about how they started the Cameron Boyce Foundation and its impact on those with Epilepsy.
You established The Cameron Boyce Foundation (TCBF) in July of 2019 in honor of your son Cameron. For those who aren’t familiar with the foundation, what can you tell us about it?
We initially started The Cameron Boyce Foundation to honor our son’s legacy. We wanted to continue the charitable and philanthropic causes Cameron was passionate about. We quickly narrowed our focus to epilepsy since that took our son’s life.
Our main objective is to cure epilepsy by funding research and initiating education and awareness campaigns while still supporting important causes to Cameron.
What are some of the biggest misconceptions about epilepsy?
That people are born with epilepsy. People can be diagnosed with epilepsy at any point in their lifetime. 1 in 26 will get epilepsy in their lifetime. Another misconception is that it is not a severe condition. It can be very serious, and in some rare cases, it can be fatal, which is why awareness of how to best manage the disease is so critical.
Lastly, one of the biggest misconceptions about epilepsy is that it is rare. The fact is epilepsy is the most common neurological disease that we know the least about. There are currently 3.4 million people living with epilepsy in the United States (1.2% of the population), and it is the second leading cause of death from a neurological condition (CDC). The Cameron Boyce Foundation wants to change these misconceptions.
How is TCBF working to move the needle when it comes to making a difference?
We work hard to be dynamic. Our website is engaging and encourages interaction from our visitors. We use our voices to spread awareness as far and wide as possible.
We work with larger foundations to help us find the best researchers, epileptologists, scientists and doctors. We fund experts who are on the cutting edge of epilepsy research.
For those who may be living with epilepsy or who have a loved one with epilepsy, what do you want them to know?
For those living with epilepsy, it can be very lonely. Unlike cancer, Parkinson’s Disease or MS, epilepsy lives in the shadows. We want people to know that the Cameron Boyce Foundation is working daily to change that narrative.
Look to us for the latest in epilepsy news and developments. We have also established an online forum for people living with epilepsy to connect with others and share resources.
What sets The Cameron Boyce Foundation apart from other foundations out there advocating to end epilepsy?
The Cameron Boyce Foundation is tiny compared with older, established epilepsy foundations. What sets us apart is our visibility and relatability due to Cameron’s notoriety.
When Cameron passed, and his cause of death was made public, we were inundated with messages from people on social media telling us that they, too, had epilepsy or a friend or family member had epilepsy. That response made it clear to us that we had a platform that we could use to make a positive impact. It’s what Cameron would expect us to do, given our circumstances.
Despite your incredible cause, your family suffered an unthinkable loss… how have you found the strength to navigate the grief?
We often get asked about our strengths following our loss. Navigating grief is a process. It’s something that never ends. Turning the biggest tragedy, our family will ever endure into something that saves lives gives us a purpose. Our work will never bring Cameron back, but we know he would be proud of what we have accomplished in a short amount of time.
Why do you think there is such a lack of information about the disease, and how can those in the medical community help change that?
Epilepsy is not readily visible. Witnessing a seizure can be very scary, but the disease is still quite a mystery. To be frank, we don’t know why there is not more attention on epilepsy because it is so very common. The cases of epilepsy deaths are significantly underreported. It is much easier for a coroner to say the cause of death was cardiac, pulmonary, drowning, etc. than to take a few more steps to determine if the cardiac, pulmonary or drowning event was secondary to epilepsy.
The medical community can bring more attention to this disease. They can better equip people who are newly diagnosed. It is their responsibility to arm epilepsy patients with information, even if it is tough to discuss what CAN happen.
Lastly, we need more young medical students to choose to go into the field of epilepsy as a specialty under neurology.
What is your biggest goal for the foundation for 2023?
To spread more awareness about epilepsy, harness our platform and engage Cameron’s fanbase and young people to talk about epilepsy and bring it out of the shadows. To raise more money for epilepsy research, to continue arming college students living with epilepsy with tools to help them successfully navigate their diagnosis and school ventures. To continue saving young lives!
Lastly, how can others get involved in your cause?
If they know someone with epilepsy, ask how you can support them. Get involved in their care. Visit thecameronboycefoundation.org and read our materials and if possible-donate…..even a small amount is helpful.