By: Mallory Bachmann
The Diagnosis and PhD Dream
Zachary Simon grew up in the sunny state of California with his mom, dad, and older sister. At five years old, Zach’s parents began noticing that he was exhibiting early signs of Tourette syndrome. While Zach’s father had a mild form of Tourette’s, Zach’s symptoms were far more severe and would soon have a much greater impact on his daily life.
Around the time Zach was officially diagnosed with Tourette’s, his symptoms began to escalate, manifesting as both vocal and physical tics. Some of the physical tics were so intense they became self-injurious, causing pain or discomfort throughout the day. These were not just small movements or sounds; they were exhausting, and at times, physically harmful.
Despite the severity of his symptoms, many people didn’t understand what was happening, including some of his teachers. In fourth grade, during a timed math test, each student was given the chance to run the timer instead of taking the test. But when it was finally Zach’s turn, a flare-up of his tics was misinterpreted as disruptive behavior, and he was denied the same opportunity given to his classmates.
“It was a tic, but I didn’t know how to describe it or advocate for myself at the time,” said Zach.
He soon learned that, while unfair, misunderstandings and judgment from others were challenges he would have to learn to navigate, and that self-advocacy would become an essential part of his journey.
Throughout middle and high school, Zach often took the initiative to meet with teachers advocating for the support he needed in classrooms in order to succeed. It was during these years, shaped by the daily realities of Tourette syndrome, Zach set his sights on a clear goal: earning a PhD in neuroscience to use his experience to improve care for others like him.
A Different Kind of College Experience
Toward the end of high school, Zach’s Tourette symptoms began to take a greater toll on his studies.
“I always had a brain that could do the work, but my body got in the way a lot,” said Zach.
Still, he graduated from high school and was accepted into the University of California, Santa Cruz, which had one of the top-ranked molecular biology programs in the state at the time.
Zach started out strong at his new school, but the challenges of managing his Tourette symptoms, especially while searching for a long-term medication, soon became overwhelming, and he made the difficult decision to return home. After briefly going back to school, he was forced to return home a second time. What was initially meant to be another short break quickly turned into something much longer when his mother was diagnosed with cancer and needed his support.
Between helping his mom get to different appointments and working as many as 110 hours a week at six different jobs, Zach had little free time during his “break” from school. During this time, Zach continued searching for a medication that could effectively manage his Tourette symptoms and fit his daily needs. But despite showing up, working hard, and pushing through excruciatingly painful days, many of his employers and peers still lacked empathy or understanding of his condition.
When Zach attempted to advocate for himself when his symptoms were flaring up, he was often met with comments such as “you always blame your Tourette’s.”
“Those types of comments were definitely infuriating and discriminatory,” said Zach. “But that has happened at multiple places I have worked in my life, some people understood while others did not.”
As his mother entered remission and life began to stabilize, Zach was finally able to refocus on returning to school. While researching his options, Zach discovered that one of his employers offered tuition assistance for select partner institutions. He took advantage of the opportunity by applying to Arizona State University as a Psychology major, since molecular biology wasn’t available through his employer’s sponsored school options. While continuing to balance multiple jobs, he remained focused on building a future through education.
And while it may not have been on the timeline Zach envisioned for himself, he managed to graduate from university with a 3.99 GPA while also finding a medication that finally gave him some relief from his symptoms. Around the same time, a connection through the Tourette Association to Michael Okun, MD, and Carol Mathews, MD. helped him discover an opportunity at University of Florida Health. Eager to turn his personal experience into purpose, Zach packed up and moved across the country to join the team.
A Cross-Country Journey to Gainesville, Florida
Zach began as a research assistant in the lab of Dr. Mathews where he contributed to studies on Tourette syndrome and Obsessive Compulsive Disorder (OCD).
“Zach developed and solidified his love of neuroscience research, and gained skills in the conduct of research,” said Dr. Mathews. “My lab conducts human research, and while Zach ultimately went on to do a PhD in basic neuroscience, he learned a great deal about how human research is conducted.”
Dr. Mathews saw Zach grow not only as a researcher but also in how he managed his Tourette syndrome.
“There were times when his symptoms were triggered by interactions with others, or by stressful situations, and he always managed them well. I saw tremendous personal and professional growth in Zach during his time with us,” said Dr. Mathews.
After Zach’s position in Dr. Mathews’ lab came to an end, he applied to join the Norman Fixel Institute for Neurological Diseases, led by co-executive directors Dr. Okun and Kelly Foote, MD. During his time at the Institute, Zach became a certified phlebotomist, supported various research projects, and helped write Institutional Review Board (IRB) protocols.
In his free time, he also attended a Tourette’s support group, led by Heather Simpson, OTR/L, for parents and young children. He wanted to be a visible example that people with Tourette syndrome can thrive, and to encourage others not to lose hope in finding the right treatments and support. By showing up for others, Zach turned his own journey into a source of strength and hope, something Dr. Okun believes sets him apart.
“Working on what you live with brings a level of empathy, compassion, drive, and insight that can’t be taught. Zach’s story is a powerful example of paying it forward to others,” said Dr. Okun.
Finding His Place Beyond the Lab
While Zach devoted himself to research and advocacy, his life in Gainesville flourished in meaningful and unexpected ways. He became involved with a local performing arts theater, where he now serves as vice president. For Zach, acting is more than a passion, it is a therapeutic outlet that helps ease his Tourette symptoms.
“When I am on stage I do not tic at all,” said Zach, “So, I have been acting my whole life partially because it gives me a safe space free of pain and not having to worry about tics.”
It was during a production of Macbeth that Zach met his future wife, Katie. Their shared involvement in the theater quickly led to a strong connection that grew beyond the stage. What stood out to Zach was Katie’s kindness, patience, and the way she never made his Tourette syndrome feel like a burden. Her understanding and compassion played a big part in why he fell for her.
Wanting to be upfront, Zach chose to tell Katie about his Tourette’s on their very first date.
“I was super nervous and shy about it,” said Zach. “But I just came out and told her I have Tourette syndrome. She replied, ‘So?’—and I just got this big smile on my face.”
For Zach, it was important to find someone who did not just “deal” with his Tourette’s, but truly accepted it, and that’s exactly what Katie did. Their relationship continued to grow, and the two were married in February of last year.
Now, after years of hard work, Zach is about to earn his PhD in neuroscience from the University of Florida, a goal rooted in his own experience with Tourette syndrome. While he is still exploring what comes next, he credits Gainesville and the University of Florida for shaping not just his career, but his life: helping him achieve a childhood dream, explore his passion for theater, and meet the person he will share it all with.
To Anyone Walking a Similar Path
Drawing from both his professional journey and personal life, Zach shares words of encouragement for anyone walking a similar path.
Q: Looking back, what would you tell your younger self who was just beginning to understand their Tourette’s?
Zach: I would tell myself a lot of things. First, I would say that you are not alone. I would also say to learn everything you can about this disorder so you can understand it. I would tell myself that my parents are trying their best, but TS is complex and hard to understand, so try not to be too hard on them. I would say it will get better, but first it will get a lot worse. Just know you can get through it—you are a lot stronger than you know. I would say not to focus on the people who put you down, but instead to look for the people who don’t care whether or not you have TS and just like you for who you are. I would also say to enjoy your childhood. You only get one, so don’t worry about what other people think or say. Just focus on making the most of the time you have while you’re young. There is so much to do, learn, and see, so don’t let TS hold you back from those experiences.
________
Q: What role has mental health played in your journey, and how do you take care of it?
Zach: Mental health is incredibly important when you have TS. Stress of any kind—even stress from good things—can significantly increase symptoms. For me, one of the most important things I learned (which was especially difficult with OCD) is that you can’t plan for every eventuality, so learning to go with the flow is essential. Over the course of my life, I’ve learned to be more easy-going and to try not to worry about things I can’t control. I’m not always great at it, but with therapy and practice, I’ve gotten much better over time.
Another very important aspect of mental health for me is having someone to talk to. This can be a friend, family member, or therapist, but being able to express how you feel without judgment and talk about things when they’re difficult is important—not just for people with TS, but especially for us. Being able to vent emotional stress not only makes us feel better, but also helps decrease tics.
Finding a support system is also important. Whether it’s a group of friends, other people with TS from a support group, an online community, a conference, or a chance meeting—any group that lifts you up can make a difference.
Additionally, learning to be comfortable with who you are and the disability you have is vital. It took me a long time to come to terms with the fact that I had a brain that was really good at school and a body that wouldn’t always let me function. Seeing the success of friends while feeling like I was falling behind made me feel inadequate. But eventually I realized that my life will be different from theirs. It may never be easy, but I’ve learned to be okay with that, to accept my disability, and to work hard to overcome it without letting it define me.
Finally, I would say to celebrate the wins—even the small ones. When schoolwork felt overwhelming or my tics made it hard to even get out of bed, I made sure to pause and recognize when I did something good or pushed through something difficult. And when I had a bigger win, I would treat myself to something I liked to eat, share the moment with a friend, or do something fun as a reward.
________
Q: Who or what has been most helpful to you throughout your journey with Tourette syndrome?
Zach: My support system has been one of the most important parts of my journey. I’ve been lucky enough to find amazing friends early in life, meet many wonderful people with TS later on, and build a supportive, caring partnership when I met my wife. The friends I’ve had since childhood—who never teased me because of my tics and stood up for me when others did—gave me a strong foundation. The people I met at Tourette Association conferences became friends and a source of support who truly understood what I was going through and helped me feel less alone. And my wife, who lets me be myself, works hard to avoid triggering my tics, and even goes out of her way to protect me in situations with a lot of triggers, has been an incredible partner through it all.
Resilience has also played a major role. I never gave up, even when things got bad or when life plans had to shift drastically because of my tics. I didn’t always know or feel like things would get better, but I kept going and worked through it anyway. That perseverance has led to an incredible life, even with TS being a part of my every day.
________
Q: What advice would you give to someone who feels like they’re going through this alone?
Zach: I would say to know that you are not alone. I didn’t meet anyone else with TS until I was 17, and I felt alone for much of that time. If I had known that there were thousands of kids just like me—going through the same things and truly understanding because they were living it too—life would have felt a lot easier. Even just having the chance to talk to one other person who understood what I was going through would have made a difference.
Knowing that now, I no longer feel alone. Support groups, along with national and local conferences, exist—and finding them can be incredibly helpful for young people. It’s not just about being told you’re not alone, but actually meeting others going through the same experiences and realizing it for yourself.Whenever I meet parents of children with TS, I try to make myself available—not only to talk to the parents and help them better understand what their child is facing, but also to show the kids that they are not alone, that they can get through it, and that things do get better.