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

Wednesday, November 13, 2019

“K(NO)W SUDEP NOW” Public Service Announcement to Help Drive Research Dollars and Education to End SUDEP and END EPILEPSY®

LANDOVER, MD. AND LOS ANGELES — 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.

About SUDEP

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. The cause of SUDEP is unknown. The death is not known to be related to an illness, accident or seizure emergency such as status epilepticus. When an autopsy is done, no other cause of death can be found. The greatest risk factors for SUDEP are uncontrollable generalized tonic clonic seizures (also called convulsions) and seizures that happen at night. SUDEP is the leading cause of death in people with uncontrolled seizures. Most often, SUDEP occurs during or right after a seizure. For more information about SUDEP visit epilepsy.com/SUDEP-Institute.

About the Epilepsy Foundation

With a network of nearly 50 partners throughout the United States, the Epilepsy Foundation is leading the fight to END EPILEPSY®. The Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $68.7 million for epilepsy research and supporting 3,091 epilepsy investigators and specialists in their early careers. Over the past 18 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer seizure first aid. The Foundation has also assisted more than 123,470 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

About The Cameron Boyce Foundation

The Cameron Boyce Foundation was established in July of 2019 and provides young people creative outlets to help change the world, honoring Cameron’s legacy by supporting the causes important to him: Ending gun violence, and the global water crisis. Given the cause of Cameron’s passing being SUDEP (Sudden Unexpected Death in Epilepsy) a third component to the foundation’s focus is Epilepsy. Cameron was an extraordinary individual, whose kindness and philanthropy will live on through those who knew and loved him. The foundation created in his honor is just as multi-faceted as he was and will strive to put forth every effort to use the best resources possible to help others and make the world a better place.

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Media Contacts

Jackie Aker
Epilepsy Foundation
310.846.9272
​jaker@efa.org

Kasey Kitchen
The Cameron Boyce Foundation
323.848.4219
kasey@advantagepr.com

 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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