When Libby and Victor Boyce lost their son, actor, dancer and philanthropist Cameron Boyce to SUDEP (Sudden Unexpected Death in Epilepsy Patients), they knew they had to honor their son’s legacy and raise awareness around the disease that took his life. In 2019, soon after Cameron’s passing, they started The Cameron Boyce Foundation. We recently spoke with Libby Boyce for National Epilepsy Awareness Month, which the Epilepsy Foundation has recognized since 1969. She shared with us misconceptions around the disease, advice for families dealing with epilepsy and how to spread awareness for epilepsy.
You recently celebrated three years of The Cameron Boyce Foundation. For those unfamiliar, can you talk about the foundation and its mission?
We created the foundation right after Cameron passed to continue his philanthropic endeavors, but we quickly realized we needed to do something about Epilepsy and the lack of information about this disease and in particular about Sudden Unexpected Death in Epilepsy (SUDEP). Our mission statement is: The Cameron Boyce Foundation (est. 2019) honors the legacy of Cameron Boyce by aiming to cure epilepsy through funding research, education and awareness campaigns while still supporting causes that were important to Cameron.
What is your advice for parents who may be dealing with epilepsy in their family?
Be armed with information, do your research, get involved with epilepsy organizations to stay informed, be confident and comfortable with your health care team, see an epileptologist at least for a second opinion if not for ongoing care, keep a journal that identifies triggers, look into seizure monitors, and take it seriously.
What is the one thing you wish people knew about epilepsy?
It is the most common neurological disease that we know and talk the least about.
What is the biggest misconception about epilepsy?
That you are born with it. You can get epilepsy at any point in your lifetime. 1 in 26 people WILL get it in their lifetime.
What are some other resources for people with epilepsy or who know someone with epilepsy, and what can they do to spread awareness?
I encourage those with epilepsy to talk about it, get first aid/CPR trained, be armed with knowledge, visit TheCameronBoyceFoundation.org, and be supportive of the epilepsy community.