Graphic by Sophia Shen
Freshman Maddie Fine, certified Tourette’s Ambassador, advocates for research and support.
by Hallie Underwood, ’20
The first couple of lines were scary, but once freshman Maddie Fine got rolling, it came naturally. “My name is Maddie Fine. I play tennis, and I was diagnosed with Tourette’s in second grade. Over the years, it’s been hard, but I found many ways to be positive and just sort of embrace it. I’m here to be a Youth Ambassador to advocate for others.”
From March 4 to March 5, Fine went through training to become a Youth Ambassador for the Tourette’s Association of America. Alongside 39 newly-trained Tourette’s Ambassadors and other supporters
Maddie Fine with her father, Jason Fine. Photo courtesy Maddie Fine.
coming from across the country, Fine was a voice in a movement for Tourette’s Syndrome advocacy.
With her dad, Fine listened to speakers, practiced presentations, met dozens of individuals across the country with Tourette’s Syndrome and spoke with congressmen and women in Washington, D.C. Fine and Mia Mantei, a junior from Cincinnati also living with Tourette’s, were paired to advocate for Tourette’s awareness. The two outlined seven congressional acts supporting medication, research, access to medical assistance, and other advocation for those affected by Tourette’s Syndrome, or TS.
“It was a powerful experience,” Jason Fine, Maddie’s father, said. “Watching Maddie and the other Tourette’s Syndrome Youth ambassadors creating new relationships with one another over a common bond was impactful. I was also incredibly proud of her maturity as she spoke with leaders on Capitol Hill. She spoke with grace and wisdom and I believe made a positive impact for the TS community … fighting for more funding and research for TS.”
IMPACTFUL MOMENTS
The Tourette’s Association of America defines TS as “a neurodevelopmental disorder that is part of the spectrum of Tic Disorders and is characterized by motor or vocal tics.” Motor tics are associated with movement, while vocal tics are associated with sound. The Tourette Association of America, formerly known as the Tourette Syndrome Association, was founded in 1972 by parents and individuals impacted by Tourette Syndrome. Vice President and Director of Digital Marketing Meghan Burns said the TAA Youth Ambassador Program brings together, trains and supports teens to advocate for Tourette’s Syndrome and Tic Disorders in their community.
“Some of the most impactful moments have been centered on a youth ambassador training, national conference, and national awareness walk. Any event that brings the community together in a meaningful way to engage with one another is special for us,” Burns said. “A large part of our community have never met anyone else living with Tourette Syndrome, so these events let them know they are not alone on this journey.”
Although Fine had never met anyone living with Tourette’s before the training, was fortunate to have a support system in the family. Her father and uncle both live with TS.
Fine admits it was not much of a surprise hearing she had Tourette’s, as her dad often admits he could recognize symptoms as early as when Maddie was one year old.
“It was not a shocking experience,” Fine said. “It is just something that became a part of me.”
Although Fine recounts some motor tics like flexing her toes and clenching her stomach, Fine has mostly experienced vocal tics throughout her life, including clearing her throat, a squeaking noise, and a snorting noise. Fine best describes TS symptoms like ‘a bad case of poison ivy.’
“It’s like you’re constantly wanting to itch,” Fine said. “You can hold onto it for a while, but eventually you just have to let it out.”
Photo courtesy Maddie Fine
A POSITIVE THING
Individuals living with TS are more likely to suffer from other neurological conditions such as Attention-Deficit Hyperactive Disorder, Obsessive Compulsive Disorder, depression and anxiety, according to Fine. Fine struggles with OCD and anxiety and sees the correlation between these conditions. She knows that symptoms of these disorders can be heightened with stress, like during finals or before a big tennis match.
“If my tics are bad, then my anxiety and OCD are bad,” Fine said. “If my anxiety and OCD are bad, then my tics are bad. It’s a big cycle. One affects the other.”
Over the years, however, Fine’s family have seen her mature quickly, TS being a factor in her admirable traits.
“She doesn’t worry about what others think of her and only focuses on what she can control,” Jason Fine said.
Maddie finds strength in overcoming the cycle of TS, OCD and anxiety, ground herself and avoiding triggers.
“I feel like I know my limits and my boundaries,” Fine said. “I think of this as a positive thing, I don’t see this as a negative thing.”
NOT AS RARE AS YOU THINK
Public figures like singer Billie Eilish and Colorado Rapids soccer player Tim Howard have spoken out about having Tourette’s, helping to spread the word about TS advocacy.
“When celebrities like Billie Eilish are speaking out about TS, people are more likely to research and understand,” Fine said. “It also makes those with TS feel more represented.”
At the Tourette’s Association of America, over 450 Youth Ambassadors have been trained to educate the public about Tourette’s Syndrome, correcting misconceptions and ending stigmas around the disorder.
“It’s important for people to represent the realities of living with this disorder and show their communities what TS is and what it is not,” Vice President and Director of Digital Marketing Burns said. “Their efforts increase understanding and decrease bullying, which can be tough in middle school and high school.”
Fine said she is open to speaking with peers about TS.
Photo courtesy Maddie Fine
“I don’t get upset or angry, because they have no reason to know,” Fine said. “I’m just going to explain to them. That’s the whole point for me, is to advocate, so more people know.”
When Fine advocates for Tourette’s awareness in schools, she also advocates for kindness and empathy. While she defines her case of TS as minor, she wants to support everyone affected.
“It’s such an interesting concept that there is something in your brain telling you to make these noises. Since people can’t help it, there is nothing we can do to fix it. I think it’s just best that people are compassionate and caring,” Fine said.
A POSITIVE THING
Sitting down with representatives like Ohio Rep. Steve Stivers and Senator Sherrod Brown, Fine proudly shares her story. Nervous at first, she opens an introduction with “Do you know what Tourette’s is?” The first representative told her and her partner her son was diagnosed with a tic disorder and would likely be diagnosed with Tourette’s.
“That was really cool,” Fine said. “My first meeting, it happened to be with someone who was affected by TS. [According to the Tourette’s Association of America ] One in one hundred school-aged children are affected by Tourette’s, so it’s not as rare as people might think.”