Meet Zoe

Zoe Koep

Zoe was seven years old when she was diagnosed with Tourette syndrome. That’s also the year she became a big sister. She found herself at a young age feeling alone in her struggle with this movement disorder.

“My mom and dad noticed I was constantly squeaking like a mouse and jumping randomly while walking. They thought I was doing it on purpose to get attention, as I recently had a new sister. I told them I couldn’t stop and it continued, that’s when they knew it was something different.”

Chronic tic disorders (CTDs) such as Tourette syndrome are common, affecting approximately 1% of youth. Anxiety disorders are present in the majority of youth with tic disorders but the types of anxiety symptoms and the impact of these symptoms in youth with tic disorders are not well understood.

Zoe knows the anxiety that comes along with tic disorders all too well.

“During fifth through seventh grade, my Tourette’s got really bad. It really got me down and embarrassed. On the days when my tics were really bad, I would beg my mom to stay home from school because I didn’t want to try to keep my tics in all day as that was exhausting and it hurt my body. I also didn’t want to do my tics all day in class and have to explain to people what was going on when I was having a tic episode. I missed a lot of school those years.”

At 15, Zoe has been navigating Tourette syndrome for eight years. “I had to figure out at a young age how my emotions affect my tics, from good to awful ways. It has been frustrating to figure out on my own and learn to deal with. This was the first moment in my life where my parents couldn’t fix something for me.”

But Zoe isn’t alone on this journey. Your support of the American Brain Foundation is instrumental in providing research opportunities for some of the best and brightest investigative researchers.

Zoe knows the importance of advocates like you. “It was really freeing when I was able to comfortably share my diagnosis with close friends who could be my advocate and help comfort me at school on my bad days.”

What does Cure One, Cure Many mean to Zoe?

“When people put the support, effort, and love into learning more about brain disease. When we all come together, we change the world for good with one cure at a time.”

Learn more about Movement Disorders