Jordan Matthew Bernstein
Jordan M. Bernstein, 2015 Recipient, Dollars 4 Tic Scholars Tourette Syndrome Scholarship Sponsored by the Brad Cohen Tourette Foundation
I’ll never forget my neighbor’s warning as I approached his dog: “Don’t pet Chippy; he’s
got ticks.” I was nine years old, and without giving it any thought I replied, “That’s okay, so do
I!” That’s how I had learned to deal with the daily challenge of growing up with Tourette
Syndrome (TS): openly and humorously. Now, almost ten years later, it has become one of my
life’s missions to educate others about this complicated and often misunderstood
neurobiological disorder.
The first tic I experienced was a loud throat clearing one. In addition to that vocal tic, I
had several motor tics which included stretching my arm backwards to the point of agonizing
pain, cracking my neck to each side, and sliding my jaw back and forth. In middle school, when
kids are most self conscious, I had a vocal tic in which I had to screech at the top of my lungs. I
did manage to find some humor in it though. One instance I can remember is when I was in the
waiting room of my doctor’s office making such sounds. A young, confused boy started
searching the room for what was producing the noise. I wasn’t in the mood to explain what TS
is, so instead I played along and helped him search the room. We never found it! Despite my
ability to find humor in my disorder, life on a daily basis was very tough.
I began advocating for myself in third grade when my family and I reached out to the
Tourette Syndrome Association (TSA) for advice. I showed a video to my entire grade and
answered questions my classmates had. My teachers applauded me for being so brave and
courageous. Additionally, many of my peers apologized for having made fun of me in the past.
In later years, my peers were the ones to explain my condition to substitute teachers who
scolded me for disrupting class. (If you ask any kid with TS, they’ll agree that substitute teachers
are the bane of our existence!) Throughout school, I continued to educate my peers and
teachers about TS.
There are many misconceptions and stereotypes about TS due in part to its portrayal in
the media. I wanted to change that. When I was in seventh grade, I applied for and was
selected to be one of 30 national youth ambassadors for the TSA. I travelled to Washington,
D.C., to be trained in giving presentations to groups of all ages, levels of education, and
professions. Along with my fellow trainees, I met with congressmen, seeking support for
ongoing research about causes and treatments for TS, and we succeeded in obtaining a
renewable, annual $2,000,000 grant. Since that time, I have given presentations to students,
doctors, nurses, and social workers. When I hear graduate students tell me that they will use
the knowledge they learned from me to educate others about the condition, that is when I
know I am truly making an impact in the world.