In Honor of Epilepsy Awareness Month: Meet Libby Boyce, Founder of The Cameron Boyce Foundation

November is Epilepsy Awareness Month. After experiencing the tragic loss of her son, Cameron Boyce, Libby Boyce found her strength and is committed to raising awareness about epilepsy. To prevent others from losing a loved one due to lack of information, she founded The Cameron Boyce Foundation. TCBF has made it their mission to provide information about the disease while additionally working to raise research dollars to put an end to SUDEP.

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Cameron Boyce was one of 3.4 million people in the United States living with epilepsy. The late Disney actor made headlines in July of 2019 when he passed from a seizure in his sleep due to SUDEP (Sudden Unexpected Death in Epilepsy Patients). Before that he only had 4 other seizures in his lifetime. Neither he nor his family had ever heard about SUDEP prior, like many people living with epilepsy today.

Please share with our audience what The Cameron Boyce Foundation is and why you created it. 

TCBF is a foundation created within a few days of Cameron’s passing to continue all of his philanthropic work.  However, we quickly realized we needed to address the lack of information out there about epilepsy.  Epilepsy awareness has become our number one priority as a foundation due to the fact that 1 in 26 people will have epilepsy in their lifetime and it is the most common neurological disease that gets the least amount of attention.

What was your journey like after losing Cameron and how did you find light and motivation again after having to experience that unthinkable loss? 

Cameron is someone who would not want us to sit around feeling sorry for ourselves.  He would want us to continue to live, take care of his sister, and to work towards making the world a better place.  TCBF has helped us in this endeavor.  In addition, I go to several support groups for parents who have lost a child.  I have an amazing family and support system that has embraced us.

TCBF presents an award called “The CURE Epilepsy Cameron Boyce SUDEP Research Award“ honoring researchers that help study epilepsy. The award is being granted to Dr. David Auerbach of SUNY Upstate Medical University for his research “Cardiac and Automatic Pathological Markers for Arrhythmias and Sudden Unexpected Death in Epilepsy Patients.” Tell us why you chose him and why his research is so important. 

Epilepsy does not get enough dollars for research because it is often unreported or underreported.  TCBF partners with Citizens United for Research on Epilepsy (CURE), who conduct an annual grant giving opportunity.  We fund one of the awardees so that CURE’s dollars can go farther and fund more proposals. We chose Dr. Auerbach because he is specifically researching Sudden Unexpected Death in Epilepsy (SUDEP), which is what Cameron died from.

Last year you had the big campaign “NowWhat?!“ addressing the next steps for those who have been diagnosed with epilepsy. Do you have anything similar planned for next year? 

We will continue with the “Now What” campaign and we are adding a component that is specifically for college students who either have epilepsy or know someone with epilepsy.  The college years for someone with epilepsy can be a risky time due to hormone changes, changing environments due to moving away from home, staying up too late, and not taking  proper care of yourself.  So, giving college students tools for how to respond if they witness a seizure is critical.

In addition to raising awareness surrounding epilepsy, your foundation also supports other causes that were near and dear to Cameron. Tell us about the other organizations you support.  

We have supported Inner City Arts, an agency in Los Angeles that provides creative arts opportunities for youth that come from disenfranchised communities.  In addition, we brought Guitars Over Guns to Los Angeles from Miami.  They introduce and teach guitar to youth to provide healthy creative outlets.  In addition, TCBF is very active in advocating for more stringent gun laws to reduce gun violence. 

Let our readers know how they can learn more and how they can support TCBF. 

They should visit us at thecameronboycefoundation.org.  They should also follow us on social media and of course consider making a donation.  Most importantly, they should remember to be kind and find ways to always help others.

Photo credit: Larry Hirshowitz

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