Youth Advocate Sofia ‘Tackles Tourette’ for Fourth Year

NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) Youth Advocate Sofia Trabilcy, 13, of Readington is the captain of her team, Trabilicy Tackles Tourette, for the fourth year in a row for the 2022 NJ Walks for TS Virtual Walk. As of May 18, she has raised over $4,700 for NJCTS, well on her way to reaching her $5,000 goal and exceeding every other team.

The NJ Walks for TS event was created in 2010 by kids, for kids. The three-month virtual crowdfunding campaign promotes acceptance, awareness, advocacy, and action on behalf of children and families living with Tourette Syndrome—an inherited, misdiagnosed, and misunderstood neurological disorder characterized by involuntary sounds and movements know as tics that affects 1 in 100 individuals. These team and individual events are a chance to stand up and step out to break the stigma attached to TS and show support for friends, family and neighbors living with this neurological disorder. The NJ Walks for TS campaign wraps up during TS Awareness Month, May 15-June 15. TS Awareness Month is a nationally recognized month for those with TS to spread awareness about their disorder.

Sofia was diagnosed with Tourette Syndrome at age 6 and has been an active youth advocate for NJCTS, participating in the Family Retreat Weekend, giving a presentation to her fourth grade class, and most notably, being one of the top fundraisers for the past four years in the NJ Walks for TS event. Sofia was the #1 fundraiser for the 2021 Walk and so far is the #1 fundraiser in the 2022 Walk as well.

“I really wanted to give back to NJCTS while spreading awareness about this neurological disorder,” Sofia states as her reasoning to start fundraising with NJ Walks for TS in 2019. “I invited all my friends, gymnastics team members, teachers and family members to join me at a local park. All of these people donated money to my event to show support.”

Sofia is much more than just her TS, she is a level 7 competitive gymnast. “Sofia worked really hard to resist the tics so that she could perform her routines,” says her mom, Jennifer, referring to a recent gymnastics meet. “The things that go on in our minds are invisible. None of the judges knew that she had Tourette syndrome or that she had to control her tics during her performance.”

Sofia also loves to create art, listen to music, sing, and decorate. She also enjoys baking.

“I think fundraising is important because we are not only spreading awareness about Tourette Syndrome, but we are also helping people to understand and be accepting to people living with a TS diagnosis,” Sofia says in her fundraising video. “Raising money for NJCTS helps people like me and other families.”

To donate to Sofia’s efforts, visit https://njcts.org/trabilcy