Chase Johnson was diagnosed with epilepsy at the age of 3. This neurological disorder affects 65 million people around the world and is characterized by unpredictable seizures. It can also lead to other health problems. But those factors did nothing to deter Chase’s enthusiasm for spreading awareness of the disorder. In fact, it propelled him to do something extraordinary.
Chase came home from school one day last spring and spoke to his parents about the fact that he’d never heard of an awareness campaign for epilepsy. He wanted to do something to change that. By fall, the 10-year-old had started Chase for the Cure, an epilepsy awareness and education foundation. How's that for goals?
Chase wanted to make sure that kids who suffer from seizures are able to participate in all life experiences—and also how people view epilepsy. His idea for the foundation is to dispel myths about the condition by providing information through training, events and programs. Those are some lofty, admirable goals for a fifth-grader. But it just goes to show that dreams and determination can be accomplished at any age.
After launching his foundation, Chase decided to host a fundraiser to help other kids with epilepsy attend Camp Brainstorm, a summer camp specifically aimed for children with epilepsy—as they're usually turned away from summer camps with the title of being “too high risk.”
Chase’s Hoop-A-Thon fundraiser was hosted at the local high school where they also held a silent auction. John Johnson, Chase's dad, said the total amount raised was around $13,000.
Since then, Chase has spoken to thousands of kids at local elementary schools near Austin, Texas. At his assemblies, he has a short education session where he talks about epilepsy, what a seizure is, and what to do if you see someone having a seizure.
“The prospect of public speaking was initially intimidating [for Chase], but he overcame this due to the passion he feels about spreading the word about epilepsy,” said Dr. Karen Keough, a pediatric neurologist who’s treated Chase since he was 3 years old. For a boy who she described as shy, it's been a big accomplishment. Keough emphasized the importance of reducing the stigma so that children with epilepsy can support each other and their peers can understand the condition.
The plans for next year's Hoop-A-Thon are already well underway. Though the date and schedule are not yet set, one thing is for certain: The Johnson family is working hard to make it even better than last year. Chase and his family have already heard from several people who have been helped by his foundation's educational programs.
Chase’s dad shared a story about a principal who contacted them after an assembly.
“The principal sent us an email saying that one of the students went home and told her mom about a boy who came to school and spoke about epilepsy. Her older sister was just diagnosed a few days ago,” said John Johnson. The parents were wondering if Chase and his family could help them with some guidance on resources. So the Johnsons got them in touch with the Epilepsy Foundation and a social worker there. Remarkable things have been set in motion since the start of Chase for the Cure.
At the beginning of March, Chase was able to stand in front of his school assembly of more than students and present a check to the EFCST (Epilepsy Foundation of Central & South Texas) for $13,195, the total amount earned during the Hoop-A-Thon. The funds are enough to cover the cost for 15 or 16 kids to attend Camp Brainstorm this summer.
As for how Chase’s life has been changed since he started Chase for the Cure, it’s been crazy, he said. The shy elementary schooler has blossomed into a rock star ambassador for epilepsy. He’s talked in front of thousands of kids and been interviews for newspapers, a magazine and online media outlets. And, Chase said, he's learned a lot about how much work it takes to put on a fundraiser, run a website, be a public speaker and use social media to spread awareness.
Photo provided by the Johnson family.