The Tourette Association of America has announced that they will be hosting a premiere and free virtual teen summit on January 9th 11:30am-6:00pm EST. The Virtual Conference will provide a forum for the #TouretteSyndrome and #TicDisorder community to learn and engage with each other throughout a variety of web-based sessions. Teens will also be provided with various resources and learn more about the support TAA offers. The theme of the event is “Adjusting to Change” and-year-old TikTok influencer Shane Koch is the Teen Summit’s Keynote Speaker! Shane copes with Tourette Syndrome and will discuss how his dog, Callum, and creating content has helped him manage his condition.
Meagan Meehan (MM): How did you discover your love for performing and how did you get into TikTok?
Shane Koch (SK): It started out when I was around 10 years old, would perform little dance videos on musically, eventually I discovered TikTok, would post here and there a video. Once I got Callum, and the pandemic hit the world, I started to really focus on making funny videos on TikTok to make people laugh.
MM: How has being an influencer changed your life?
SK: It really hasn’t changed much. Here and there I do get recognized (example, Callum’s vet technicians all the sudden asked if this was Callum from @Callumtheridgy on TikTok). I also have had parents of kids with Tourettes reach out to me.
MM: When and why did you decide to disclose your Tourette’s Syndrome publicly?
SK: It was when I stared TikTok. I made it public so I can help others and help give them confidents about their Tourette’s.
MM: How did you first discover you have this illness and how has it impacted your life?
SK: When I was 8 when my parents divorced was when the first symptoms of Tourette’s started. Throughout middle school, it was very tough, as I was not only bullied by the students but teachers as well. Eventually I decided I am who I am and there is no shame in being different. I gained confidence and decided this is me.
MM: How has your dog helped you manage the effects of condition?
SK: He feels when I do the tics. He would come up to me and nudge me or would want to play etc. He finds ways to distract me.
MM: What are you most excited about regarding the conference?
SK: To meet other teens with the same condition I do, and here about their experiences as well.
MM: What do you wish more people knew about Tourette’s?
SK: I wish that people didn’t think about Tourette’s as just cursing. I also wish that the science behind Tourette’s was more known so we would know how to react to it.
MM: If this launch is successful, might this conference become an annual event?
SK: Yes! We hope to make this an annual event going forward and we hope to reach as many teens around the country as possible!
MM: What projects are coming up for you soon, how will you be getting involved with the Tourette Association of America in 2021, and is there anything else that you would like to mention?
SK: I’m becoming a youth ambassador for the Tourette Association of America and this way I’ll be able to educate people more about Tourette’s. I’m continuing to grow my following on Instagram as well as TikTok.
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Founded in 1972, the TAA is dedicated to making life better for all individuals affected by Tourette and Tic Disorders. The premier nationwide organization serving this community, the Association works to raise awareness, advance research and provide on-going support. The TAA directs a network of 32 Chapters and support groups across the country. For more information on Tourette and Tic Disorders, call 1–888–4-TOURET and visit us at tourette.org, and on Facebook, Twitter, Instagram and YouTube.