Tess and Paige Kowalski with Cami Jimenez educate the students and teachers at Hamilton Primary School about the neurological disorder on behalf of NJCTS, the nation’s first Center of Excellence for Tourette Syndrome
BRIDGEWATER, NJ— The Kowalski sisters know how to captivate a crowd when delivering Youth Advocate presentations on behalf of the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS) to schools and community groups all across New Jersey.
On February 8, veteran NJCTS Youth Advocates, sixteen-year-old Tess and thirteen-year-old Paige, led a presentation at the Hamilton Primary School in Bridgewater. More than 115 students learned about Tourette Syndrome (TS)—a misunderstood and misdiagnosed neurological disorder that affects 1 in 100 children, characterized by vocal sounds and motor movements called tics. The sisters tag-teamed, swapping personal stories of their experiences with TS.
“TS has been both a burden and a blessing in our lives,” said Paige Kowalski. “Some tics can be embarrassing or painful. TS has also been a blessing because we’ve actually had all these amazing experiences where we get to meet a bunch of cool people who also have TS.”
The Kowalskis find strength in each other. They became Youth Advocates in order to help other kids struggling with TS who may not have the same kind of support. School age children with TS and the associated disorders are often the targets of bullying.
“Kids with TS are just as normal as all of you and they should never be bullied because of their tics,” said Tess Kowalski. “We would never make fun of someone with diabetes who needed to take insulin to actually keep them alive. So we should never bully a kid with a disorder like TS that they can’t control and for which there is no cure. Bullying is never the answer—no matter what.”
Joining Tess and Paige during the question-and-answer portion of the presentation was NJCTS Youth Advocate-in-training Cami Jimenez who wowed the group with her knowledge of TS. Cami, who attended the NJCTS Youth Advocate training in October 2015, is looking forward to leading a presentation in the near future.
“Tics are different for every kid,” said Cami Jimenez, responding to a question. “Some tics are harmless like eye blinking but there are others like neck jerking which can eventually be painful. Kids with TS aren’t harmful to other kids.”
NJCTS Youth Advocates present in schools, community groups, and hospitals throughout New Jersey about Tourette Syndrome and its associated disorders. In addition to providing an overview of the neurological disorder, Youth Advocates promote understanding and tolerance and deliver a strong anti-bullying message. The presentations have grown to include a discussion of the Six Pillars of Character: Trustworthiness, Respect, Responsibility, Fairness, Caring, and Citizenship.
“Our Youth Advocates foster understanding, sensitivity, and tolerance of TS while displacing the myths and stereotypes that are often associated with this misunderstood and misdiagnosed disorder,” said NJCTS Executive Director Faith W. Rice. “By educating others, we hope that each new generation will grow up with a better understanding of TS, making bias a thing of the past.”
For more information about Tourette Syndrome and the NJCTS Youth Advocate program, contact 908-575-7350 or www.njcts.org.
NJ Center for Tourette Syndrome & Associated Disorders, Inc.
Collaborative partnerships for the Tourette Syndrome community
NJCTS is the nation’s first Center of Excellence for Tourette Syndrome and Associated Disorders. Through partnerships and collaborations, NJCTS provides a continuum of services, support, and education for families; outreach and training for medical and educational professionals; and advocacy for collaborative research for better treatments and a cure for TS. For more information, please visit www.njcts.org or call 908-575-7350.