Abigail Bodamer, a 15-year-old from Clymer who was recently chosen as a Youth Ambassador for Tourette Association of America, is looking to help educate people on the different ways Tourette Syndrome can show itself through her new role.

Bodamer was one of 116 young people selected nationwide to attend the Tourette Association of America’s Ambassador training in Washington, D.C., where they met with Senator Charles Schumer, Senator Kirsten Gillibrand, Congressman Nick Langoworthy, and Representative Claudia Tenney to advocate for greater support for people living with Tourette Syndrome and other Tic Disorders.

It is estimated that one in 50 school-aged children in the United States are affected by Tourette Syndrome or another Persistent Tic Disorder. Tourette Syndrome is a neurological disorder that impacts individuals of all races, ethnicities, and genders. Due to the complexity of the condition, approximately 50% of those with Tourette Syndrome remain undiagnosed. Because the condition is highly stigmatized and often misunderstood, individuals with Tourette Syndrome often face bullying, misdiagnoses, and a systemic lack of support, all of which can have a deep impact on quality of life and sense of belonging.

The TAA Ambassador Program brings together, trains, and supports youth, teens, and young adults to advocate for people living with Tourette Syndrome and other Tic Disorders in their community. The goal is for Ambassadors to educate their peers, school administrators, local leaders, and elected officials about Tourette Syndrome. TAA Ambassadors spread tolerance and understanding while dispelling myths and stereotypes that are often associated with this misunderstood and misdiagnosed condition.

Abigail Bodamer was diagnosed with Tourette Syndrome at seven years old. Part of Abigail Bodamer’s work as a TAA Youth Ambassador includes her going to and presenting on Tourette Syndrome at other schools.

Bodamer said she became interested in being a TAA Youth Ambassador when her mom told her about it, and they both felt it was a great way to get her point across about Tourette’s and share her story.

“I think since I was diagnosed at seven and I was the one who told my class, it felt calming to be heard and to just let everyone know that even the people who don’t always look like they have Tourette’s can still have Tourette’s,” Bodamer said.

During her time in Washington, Bodamer and the other Youth Ambassadors had a day of training for about seven hours. They worked on public speaking, their elevator speech which Bodamer said they were going to use when they went to talk with their Congressmen and State Representatives, and on their slideshows and presentations. As a part of being a Youth Ambassador, Bodamer will be traveling to a few different schools to talk about Tourette Syndrome, and will be using her slideshow and presentation while doing that.

The Youth Ambassadors also had an advocacy day, took a photo in front of the steps of the Capitol and some more with Baylen Dupree — a Tourette Syndrome advocate who uses social media to tell her story and raise awareness of the disorder — and then met with their individual state congressmen and representatives.

Bodamer’s work as a Youth Ambassador continues on March 24 at PennWest Edinboro University.

Abigail Bodamer was diagnosed with Tourette Syndrome at seven years old. Part of Abigail Bodamer’s work as a TAA Youth Ambassador includes her going to and presenting on Tourette Syndrome at other schools.

“I am going to PennWest Edinboro University to speak with the special education teachers about Tourette’s and show them the presentation,” Bodamer said. “We have to do three different presentations and three different schools per year.”

The most important thing for Bodamer when it comes to Tourette Syndrome and her role as a Youth Ambassador is to teach people about all of the different aspects of the disease. She said sometimes it can show itself in other, less noticeable ways.

“Tourette’s isn’t just the swearing or the copalaria,” Bodamer said. “There’s a bunch of co-occurring conditions that can oftentimes be worse than the tics themselves.”

These conditions include but are not limited to OCD, ADHD, anxiety and processing issues. Bodamer said Tourette Syndrome is not always easy to diagnose in kids, and most do not know that they have it until they are older and the co-occurring conditions affect them more.

“Even if you don’t have Tourette’s as bad or you’re on the lesser side of the spectrum — because it is a spectrum — you still have a voice and your voice still matters,” Bodamer said.

To learn more about Tourette Syndrome and the TAA Youth Ambassador program, visit tourette.org/youth-ambassador-program/.