Epilepsy Foundation and The Cameron Boyce Foundation Launch Initiative to Raise Awareness about Epilepsy and the Risk of SUDEP

By Staff Reports

(Victor Valley)– Epilepsy Foundation and The Cameron Boyce Foundation launched a new initiative called “K(NO)W SUDEP NOW” to raise awareness about epilepsy and the risk of sudden unexpected death in epilepsy (SUDEP), particularly among youth and young adults. The initiative features a public service announcement with Cameron Boyce’s parents and friends, as well as a new website KnowSUDEPNow.org to provide information about SUDEP and encourage donations. In addition, for a limited time, anyone that donates $100 or more will receive a t-shirt designed specifically for this fundraising initiative.

“K(NO)W SUDEP NOW is about accelerating research and education to end SUDEP,” said Sally Schaeffer, senior director of the Epilepsy Foundation’s SUDEP Institute. “We felt this partnership was mutually beneficial given the work we are doing at the Epilepsy Foundation’s SUDEP Institute and the efforts The Cameron Boyce Foundation has embarked on to shine a light on SUDEP. The goal of this initiative is to educate people unaware of epilepsy, and empower those living with epilepsy to discuss SUDEP with their medical professional so they can reduce or mitigate their risk.”

Improving public awareness of epilepsy and SUDEP will drive more research dollars to help end SUDEP and END EPILEPSY®. K(NO)W SUDEP NOW provides a national platform to bring awareness to epilepsy and SUDEP and offers tools and resources for individuals and families to engage with their healthcare team about reducing their risk of SUDEP.

Following the passing of their son Cameron Boyce due to SUDEP, Victor and Libby expanded the focus of the foundation Cameron had established earlier this year to include epilepsy and SUDEP.

“We would like to shine more of a light on epilepsy by getting more funding, more research and more people involved. And we hope that Cameron’s reach can do that,” said Victor and Libby Boyce.

Approximately 3.4 million people in the United States are affected by epilepsy. Epilepsy is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions. Over a lifetime, one in 10 people will have a seizure, and one in 26 will be diagnosed with epilepsy. Each year, about 1 in 1,000 people with epilepsy die from SUDEP.

For more information, visit KnowSUDEPNow.org.

 

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