Dr. Karen Keough, Chase for the Cure in Austin Family magazine

by ih-chi admin

Chase Johnson (11 years old) was disappointed that his school never taught about epilepsy, a disease he suffered from, and instead focused on other chronic conditions like diabetes and cancer.

He decided to change that by launching Chase for the Cure a non-profit organization focused on raising awareness about epilepsy. We wrote about Chase for the Cure last August. (10-Year Old Creates Non-Profit to Raise Awareness About His Own Condition)

Austin Family magazine recently caught up with Chase and his parents to learn about his progress.

Dr. Karen Keough, Chase’s pediatric neurologist who has treated him since he was 3 years old, told the magazine that Chase is shy by nature and is one reason she was so impressed with how much he has accomplished in spreading epilepsy awareness. 

“The prospect of public speaking was initially intimidating, but he overcame this due to the passion he feels about spreading the word about epilepsy. I cannot overestimate the importance of reducing stigma so that these children can support each other, and so that their peers can understand their condition, “ said Dr. Keough.

Below is an excerpt from the interview.

AFM: What’s it like living with epilepsy?

Chase: It’s hard to explain, because it’s different every single day.

Kelly: We’re constantly changing his medication.

John: With kids, you’re trying to keep them on just enough medicine: not any more than they need, but enough to cover what they need. But they’re growing, so those dosages are going to be constantly changing as they grow. About a year and a half ago, Chase had an implant put in. It’s a VNS (vagus nerve stimulator), and the layman’s way to describe it is like a pacemaker for your brain. We have started lowering the medicine to see if we can go with a smaller dose.

AFM: What made you want to start a foundation?

Chase: I told my dad that they’re always talking about well known diseases like diabetes and cancer, but they never, ever talk about epilepsy. I was wondering why no one ever does that. So, I had a couple of meetings with my principal [at Rooster Springs Elementary in Dripping Springs].

John: Chase came home to me and said, “I want to start a foundation.” He said he wanted to raise awareness, and he wanted to do a fundraiser. He already had the idea of doing something related to basketball. So, we went to the computer and started looking stuff up. We found the contact information for the Epilepsy Foundation of Central and South Texas. Chase went and talked with them for about an hour. We came out of it with some ideas and a plan for Chase’s Hoop-a-Thon. He presented his ideas to the high school basketball coaches and asked them for help, and it kind of grew from there.

AFM: How did it go?

Chase: Pretty good. It was 4 hours. First, we did a kids’ clinic for younger kids. After that, we did the Hoop-a-Thon. Basically, you shoot for 5 minutes and see how many you got. You get people to pledge money per shot, or they can do a flat pledge. After that, we had a skills challenge, kind of like the NBA March Madness skills challenge. While everything was going on in the gym, they were also having a silent auction in the hallway.

John: Depending on what comes in and final costs for paying for gyms and things like that, it’s going to be about $13,000 raised.

Read the full interview on AustinFamily.com.