10-Year Old Creates Non-Profit to Raise Awareness About His Own Condition

by ih-chi admin

Seven months ago, ten-year-old Chase Johnson came to his father frustrated that his school's disease awareness programs mostly focused on cancer and diabetes.   

“What about epilepsy?” he said. Epilepsy is a neurological condition that affects the nervous system often triggering seizures in patients and affects more than two million people in the U.S.

Chase was diagnosed with complex partial seizures caused by epilepsy when he was just three years old by his neurologist Dr. Karen Keough of Child Neurology Consultants of Austin.

His father says at one point he suffered 20 to 25 seizures a day. 

For many years, Chase controlled his seizures with various medications. When the seizures returned with more severity and frequency, Dr. Keough recommended VNS, or vagus nerve stimulation.

“It’s like a pacemaker for the brain,” explained Dr. Keough. Surgically implanted near the brain, the device is designed to prevent seizures by sending pulses of electrical energy to the brain.

While epilepsy plays a major role in Chase’s and his family’s life, he doesn’t feel like many people in his community know about it. So, he decided to change that.

Early this summer, Chase with the help of his father, launched the non-profit, Chase for the Cure. The website, created by the fifth grader, reads:

Chase for the Cure is a nonprofit organization established by a 10-year-old boy to raise awareness and fundraise to help children affected by epilepsy.

Specifically, Chase is working to create an Epilepsy Awareness Day at his and other local schools in Dripping Springs, Texas. He is also raising money for the local Epilepsy Foundation’s Camp Brainstorm at Chase for the Cure’s inaugural Hoop-A-Thon and Basketball Skills Challenge on October 22.

“Many kids with epilepsy are often turned away from normal camp activities like swimming,” said John. He says Camp Brainstorm allows campers to participate in whatever activities they wish in a medically secure environment. The experience also gives campers a chance to be with kids just like them.

John says he’s learned a lot working with his son on this project. “If you talk about it enough, you’ll find that someone has a cousin, a brother, a neighbor who has epilepsy,” said John.

To participate at the October 22nd event or to support the cause, visit www.chaseforthecure.net.