A Partnership between the Epilepsy Foundation & The Cameron Boyce Foundation
KNOW SUDEP NOW
Cameron Boyce was a successful actor recognized by millions of fans around the world and a tremendous humanitarian, who made it his mission to use his platform and resources to give back to others in need. On July 6, 2019, Cameron passed away from SUDEP – Sudden Unexpected Death in Epilepsy. He was just 20 years old.Each year, thousands of people living with epilepsy die from SUDEP. But too little is known about why SUDEP happens and what can be done to prevent death in epilepsy. The Cameron Boyce Foundation and the Epilepsy Foundation have joined forces to create K(NO)W SUDEP NOW! – an initiative to bring awareness and to end sudden unexpected death in epilepsy.
Subscribe to our email list
Follow #kNOwSUDEPnow for stories about SUDEP.
What is SUDEP?
When a person is diagnosed with epilepsy it can be overwhelming and they often have questions about their life and future. Getting reliable information and working closely with your health care team is key to dealing with the challenges of a life with seizures. Often, mortality in epilepsy such as Sudden Unexpected Death in Epilepsy (SUDEP) is difficult and uncomfortable to talk about.
SUDEP, while rare, is said to occur when a person with epilepsy dies unexpectedly and was otherwise healthy. The death is not known to be related to an accident or seizure emergency. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled. When an autopsy is done, no other cause of death can be found.
With education and awareness, people living with epilepsy can feel empowered to understand their risks and work with their health care team to understand seizure management and a lifestyle plan to live each day to the fullest.
Stories of SUDEP
About Epilepsy & the Brain
About Epilepsy & the Brain
“Epilepsy can affect anyone with a brain. And anyone with a brain can affect epilepsy.”
More than 3.4 million people in the United States live with epilepsy. This makes epilepsy more common than other diseases combined – such as Cerebral Palsy, Parkinson’s Disease and Multiple Sclerosis. But yet, very few seem to know about epilepsy and even less know about SUDEP.
A seizure occurs when there is abnormal and excessive electrical activity that temporarily interrupts normal brain function. The four most common causes of epilepsy are: brain trauma, brain stroke, brain tumor and brain infection. Some other cases might be genetic, immune, metabolic or in some unknown.
There are many types of seizures. Seizures can be a staring spell, a muscle twitch or spasm, difficulty speaking, confusion, automatic mouth or hand movements, wandering and unsteadiness. Some seizures cause a person to collapse, shake, and become unaware of what is going on around them. Some seizures have few outward signs and may be as subtle as a funny sensation or unusual smell a person experiences. Epilepsy is a spectrum of disorders. The impact of epilepsy on each person is unique. To learn more, visit
Theconnects 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. Saving lives by increasing awareness and education about the risks of SUDEP is core to our mission.
Theis a program within the Epilepsy Foundation established to prevent Sudden Unexpected Death in Epilepsy (SUDEP). The SUDEP Institute empowers people living with epilepsy and their caregivers with information and education about SUDEP, drives and supports research, and offers bereavement support services for those affected by a loss from epilepsy. It is critical that those living with epilepsy and their families understand their risk for SUDEP and the steps to take to prevent it and obtain seizure control.
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.
“We all go… what you leave should be bigger than you.” - Cameron Boyce, 2018
- Imagery of Cameron Boyce is credited to Ben Cope Photography