Meeting My Inspiration to Advocate

Hello everyone, my name is Kyle Swords, I’m 17 years old and starting my senior year in high school. I was diagnosed with Tourette Syndrome at the age of five and it has remained a big part of my life ever since.

Going into elementary school, I remember it meant very little to anyone else. We were all very weird and goofy in our own way as most little kids are, but growing older people started to notice. My tics went from being in the background, to the target of many stares, side eyes and different odd looks. This is when my battle with Tourette really started.

At the time, I felt alone. I didn’t fully understand the disorder just yet and I hadn’t met anyone else with my condition. I wanted to learn more and meet someone who could relate to me and who I could connect with. I communicated this to my parents and they did a deep dive into the internet. Eventually, they found something, something that would give me a new home, give me an escape, and give me a new ambition – NJ Center for Tourette Syndrome and Associated Disorders.

Through NJCTS I was finally able to meet others with Tourette Syndrome at one of their many events. I was finally able to talk to others that truly understood what I was going through. I also discovered another part of their program, youth advocacy. They train speakers and send them out to schools, hospitals and other locations to share their personal experience and spread information about Tourette Syndrome. I was able to get someone to talk at my school; her name was Tess and she changed my life. As an awkward 6th grader who was struggling with my disorder and the acceptance from others, seeing her on the stage speaking her mind truly inspired me. 

The days after her presentation felt different. I not only felt accepted by others, but almost felt cool in my own way. I wanted to be able to do this for others. I went through NJCTS youth advocacy training and I was able to start doing presentations on my own. I was able to find the confidence in myself to travel around New Jersey and talk at different venues. I was even gifted with the chance to go to Capitol Hill to talk with New Jersey legislators about increasing funding for Tourette Syndrome initiatives. 

This past summer, I was able to take part in the Tim Howard Leadership Academy, a selective program to help grow advocacy skills and become a leader in life, hosted by NJCTS at Rutgers University. While attending I met some great people and made some even greater friends. But what was the biggest surprise was after six years, I finally saw Tess again. She is currently a second year PhD candidate at Rutgers. Tess’s advocacy work with NJCTS has led her to pursue a career in neuroscience and research on Tourette! I was able to thank her for all she has done for me, but also reflect on how far I’ve come.

Looking back on all that has happened, I have a few people to thank for my growth: my family for always supporting me and all my choices; once again, Tess for helping me find confidence in myself and starting me off on this journey; and finally, NJCTS for making my journey possible and always giving me opportunities in life.

I’m so proud of the person I’ve become and I would highly recommend anyone reading this to donate to NJCTS to help other kids like me to find acceptance and confidence in themselves. Thank you so much for giving your time to read this and know YOU can make a difference too.

Kyle and Tess in 2016 when
she spoke at his school.
Kyle and Tess at the 2022
Tim Howard Leadership Academy

How Tess Reacted to Seeing Kyle!

All funds raised from our year-end appeal benefit the programs of NJCTS that advance our mission to  ensure children and adults with Tourette Syndrome and associated disorders are empowered and accepted through education, advocacy and research.

New Jersey Center for Tourette Syndrome and Associated Disorders, Inc. is an exempt organization as described in Section 501(c)(3) of the Internal Revenue Code, EIN #26-1388409. Consult with your tax adviser as contributions and sponsorships may be tax deductible.