11-year-old Chase Johnson starts epilepsy foundation, basketball fundraiser

Source: Austin 360 / Nicole Villalpando

Chase Johnson, 11, is like many boys his age. The Dripping Springs-area fifth-grader loves karate and basketball. He’s unlike most fifth-graders in that this year, he started his own foundation. Chase for the Cure tries to raise awareness about epilepsy as well as send kids to Camp Brainstorm, a one-week camp in Rockport for children ages 8-17 who have epilepsy.

The idea came from Chase because he knew students in school were learning about “all the popular diseases” like cancer and diabetes. “No one ever talked about epilepsy or asthma.” He wanted to know why that was.

Chase for the Cure is holding its first big fundraiser, the Hoop-a-thon and Skills Challenge on Oct. 22. At the event people can pledge to donate or get friends to donate money for each basketball basket they make in five minutes. People in sixth-grade and older can participate in a basketball skills challenge tournament and kids kindergarten through fifth grade can improve their skills at a clinic. Of course, there’s also a silent auction.

All the money will go toward helping send more children to Camp Brainstorm, which costs about $900 per kid, and to help Epilepsy Foundation of Central & South Texas raise awareness. Chase is also speaking at elementary schools in the Dripping Springs school district about epilepsy and the Hoop-a-thon.

Chase and his parents Kelly and John Johnson have begun talking about epilepsy. Chase will talk at school assemblies at Dripping Springs elementary schools. Johnson Family photo

Close friends know that Chase has epilepsy, as do his teachers, but most of his classmates don’t. Chase knows the statistics he got from the National Epilepsy Foundation: 1 in 26 people will develop epilepsy sometime in their lifetimes. In kids, it’s about 1 percent of all kids or 10 kids in 1,000. And while, his family has been told unofficially there are four kids at his school with epilepsy, they believe there’s probably even more.

Chase’s doctor, child neurologist and epileptologist Dr. Karen Keough, of Child Neurology Consultants of Austin, says epilepsy can be “a very stigmatizing diagnosis. There are many, many children with epilepsy… There’s so much epilepsy in children, it’s right under everybody’s noses.” Children who are on medicine for epilepsy often won’t have the grand mal seizure that you see in movies. “They’re more likely to have subtle seizures and might not be aware of them,” she says. “If you don’t know what they are looking for, you don’t know it’s epilepsy. It’s ‘that was weird. Why does that child do that?’”

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