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CNF O&A - July 16, 2019                                                                               View this email in your browser

Dear CNF Partners,
 

This past week, many of you might have heard that Cameron Boyce, star of Disney Channel shows “Descendants” and “Jessie,” died; apparently of SUDEP, or sudden unexpected death in epilepsy. Since his passing, on July 6th, the news world and social media have lit up with discussions about SUDEP. SUDEP will take the lives of approximately 1.2 in every 1000 people who have epilepsy, killing roughly 2,600 people in the United Stated each year. It used to be believed the SUDEP was less common in children, but more recent research has found that the risk is the same in children as adults.

Despite these statistics, many families whose children live with epilepsy have still never heard of it.

“Many of my colleagues, myself included, are paternalistic creatures,” Dr. Gaillard said in an interview. “Many don’t talk about it because it is a low risk, and there is nothing you can do about it. They’ve made that decision for their patients.”(via NYT)

While the exact cause of SUDEP is unknown, keeping seizures under control is the best way to decrease the risk. For families of children with uncontrolled seizures, this is the goal, but it’s not always achievable. We hear you, and we see you.

Many of you may live with the fear or SUDEP every day, but no doubt a very public death like Cameron’s can bring your fears rushing to the forefront. Our hearts go out to you, and our hearts go out to Cameron Boyce’s loved ones during this very sad and tragic time of loss.

And while we still need more research to prevent SUDEP, we’re working hard at CNF to make sure that the word gets out, so that no parent is ever left wondering “why didn’t anyone tell me that this could happen?”

Earlier this year, in partnership with Digital Health Solutions LLC and Greenwich Biosciences Inc., CNF released the results of a pilot study using a high-tech tool to automatically generate SUDEP risk screening during routine primary pediatric care visits. The tool is Digital Health Solutions’ Child Health Improvement through Computer Automation, or CHICA, system. And preliminary results showed that after starting CHICA with the SUDEP module, the number of caregivers who reported discussing SUDEP with their child’s pediatrician more than doubled from 21% to 46%. These results are unprecendented, and we’re eager to roll the CHICA SUDEP module out into clinics to help ensure that these important conversations are happening.
 
CNF has also created a set of resources to help families understand the risk of SUDEP, and create a Seizure Action Plan in collaboration with the Danny Did Foundation and the Epilepsy Foundation SUDEP Institute, along with two leading pediatric epileptologists and Digital Health Solutions.
 
No family should ever have to lose a child. Until the day when SUDEP can be eradicated, let’s continue to spread the word, and work to fight SUDEP together. 
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Ann Tilton, MD; CNF President

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