In honor of Epilepsy Awareness Month, I had the privilege of conversing with Victory and Libby Boyce regarding their impactful efforts through the Cameron Boyce Foundation (TCBF). As you may remember, Victor and Libby tragically lost their son, actor Cameron Boyce, in July of 2019 due to SUDEP (Sudden Unexpected Death in Epilepsy Patients). Cameron experienced a total of five seizures throughout his life, with the first occurring when he was 17 years old and the last when he reached the age of 20. There is a widespread misconception about epilepsy, which is completely false, that it is a condition one is born with. Epilepsy can affect individuals of all ages. Cameron’s seizures occurred exclusively during his sleep, which provided reassurance that he was in a safer state. Despite being the most common neurological disease, epilepsy is severely underfunded due to a lack of information about the condition.

There is growing suspicion that individuals who have passed away suddenly and without a clear cause (often attributed to heart failure or brain-related issues) may have actually experienced SUDEP. It’s surprising how little medical professionals specializing in neurology know about SUDEP. This highlights the importance of starting a conversation about it. TCBF offers a range of resources to empower individuals with epilepsy with knowledge, assistance, and the necessary inquiries to make when consulting their healthcare provider.


Cox: Victor, Libby, November is Epilepsy Awareness Month. Both of you are dedicated to epilepsy awareness. What does this month signify to you annually?  

Well, firstly, it is a very sad reminder that epilepsy is what took our son’s life, and yet, it is a time that recharges us to amp up our epilepsy awareness. We are dedicated to helping others who live with epilepsy or who are new to the epilepsy community to get armed with knowledge, to be their own advocate and to take all precautions. 

Cox: What activities do you both perform regularly to increase awareness?  

Vic and I do a lot of interviews to get our messaging out.  We talk about all of the amazing materials the foundation has created over the past year to help support people living with epilepsy.  In addition, during November, our social media is very active and we blast our messaging as loudly as we can. 

Cox: How can I and others educate and raise awareness this month?  

Well certainly visit the Cameron Boyce Foundation website and peruse through our materials.  If anyone knows someone living with epilepsy, talk to them about what you learn and ensure that they have a doctor who they trust, who understands their particular concerns and who provides good support. Talk about epilepsy and help reduce the stigma!   

Cox: Honoring Cameron Boyce, your son, has taught you much about epilepsy. What have you learned about epilepsy that you think everyone should know?  

That you must have a doctor that you trust first and foremost.  You must read up on your condition and ask your doctor lots of questions.  You should see an epileptologist, even if you have another neurologist.  You must maximize sleep and minimize stress, learn your triggers, ensure your friends and family know what to do when you have a seizure, take your medicine at the same time every day and lastly, consider monitors and other progressive interventions.  Lastly, although you must live your life, you should not take your diagnosis lightly. 

Cox: Both of you founded the Cameron Boyce Foundation. Could you educate our readers about the foundation and its mission?  

The foundation was begun within two days of Cameron’s death (thecameronboycefoundation.org).  The mission of TCBF is to cure epilepsy through funding research, education and awareness and to support the causes that were dear to Cameron’s heart. 

Cox: Four years after its founding, the organization has made great strides. Which memories are special to you both?  

I think the most amazing thing has been the team that we have been able to bring in to do this work.  They are beyond anything we could have wished for.  Cameron’s best friends have dug into this issue with fervor, which is just so heartwarming.  They do it for the love of Cameron and we are so proud of them!  In addition, for the past two years, we have had two galas, which were absolutely mind blowing.  Our village encircles us and we all mutually think about Cameron, his legacy and our need to do more to reduce the impact of epilepsy.   

Cox: You awarded Yara Shahidi the first Youth Empowerment Award during the gala that took place in May in honor of Cameron’s birthday. I want to know about the gala and why Yara Shahidi was chosen as a recipient.   

Choosing Yara was the easiest decision the foundation has made.  There is no other young person who has bridged advocacy and an acting career/notoriety the way Yara has.  She speaks out on issues that are important to her before she talks about anything else relating to her career.  She is selfless and understands her platform.  She and Cameron were cut from the same cloth.  They were good friends and started up in the entertainment world together.   

Cox: You’re working to increase epilepsy representation in cinema and TV. Why did this matter to screen viewers or big screen viewers?  

Epilepsy must be normalized.  1 in 26 people will have epilepsy in their lifetime.  There is no other serious disease that one can say this about.  People watch TV and movies and because of that, we need to include characters with epilepsy to reduce stigma and to make those living with epilepsy feel like part of the human race.   

Cox: What’s next for you both and the foundation?   

We are really focusing on awareness, bringing safe spaces for conversation and support to the epilepsy community, and creating epilepsy ambassadors in communities throughout the US and beyond. 

Follow Them on Social

The Cameron Boyce Foundation IG
Victor Boyce IG
Libby Boyce IG
TCBF Facebook
TCBF TikTok