KD Sunday Spotlight: Pennsylvania Tourette Syndrome Alliance benefits families, schools, and individuals

PITTSBURGH (KDKA) – It’s Tourette Syndrome Awareness Month and in this week’s KD Sunday Spotlight, we’re highlighting a nonprofit organization that’s spreading awareness about the neurological disorder. 

The Pennsylvania Tourette Syndrome Alliance provides education and assists families, schools, and communities while at the same time advocating for people diagnosed with Tourette Syndrome. 

Volunteers shared their courageous stories. 

“It was kind of confusing why I was doing the things that I did and I had co-morbid anxiety, I dealt with a lot of that and back then it would have been nice to know why I was doing that,” said Stephanie Dissen, a board member. 

Dissen was diagnosed with Tourette Syndrome when she was eight years old. 

She didn’t know much about the disorder, which involves both physical and verbal tics. 

Tics are uncontrolled, repetitive movements or sounds. 

Her son was diagnosed around the same age that she was. 

“When my son started to tic and I wanted to find out why he was doing that, but I knew we wanted more answers, and more was to help him,” Dissen said. 

That’s when she found the Pennsylvania Tourette Syndrome Alliance, which educates, advocates, and supports individual families. 

They have support groups and events like a yearly family camp. 

“Then we had something to say this is why you’re doing this, and this is how we can help you from doing it, not necessarily from but feel better about it and be more comfortable with it and accept it,” she said. 

There are many misconceptions about the neurological disorder. Stephanie’s mom, Patty John, looked back on her daughter’s diagnosis. 

“I told no one when she was diagnosed because it was something embarrassing, people made fun of it, and I had no resources,” said John, who is also the treasurer of the PATSA. 

The alliance can also provide education for the community and schools to increase the understanding of the complex disorder. 

“One of the first things PATSA did for us was help with an IEP and go into my grandson’s school and do a presentation for the teachers and the staff about Tourette Syndrome and teach them, that was life-changing and they also did a presentation to the entire student body,” John said. 

“We know that they need help in school, just having others that can relate to them, and they need the information on how they can find help, doctors, therapists, things like that,” added Brandi Cooper, a consultant with PATSA. 

Brandi Cooper’s husband and two children have Tourette Syndrome, as PATSA’s western Pennsylvania consultant, she’s passionate about educating people and advocating for those diagnosed. 

“My hope and wish is that everybody can know about PATSA and get that help so they can say ‘Hey, I think I’m having some tics and go to see a neurologist and get that diagnosis,’ all the way to reaching out and getting the help that I can attend meetings and do trainings for their school,” Cooper said. 

A few weeks ago, PATSA’s first “Can’t Sit Still 5-K Run-Walk” in Carnegie was successful. 

Brian Crawford, who was diagnosed in his late teens, just set up something illuminating in honor of Tourette Syndrome Awareness Month, which goes from May 15 until June 15. 

The Gulf Tower and Koppers Building in downtown Pittsburgh lit up teal on May 16. 

“I think it’s great to spread awareness because so many people don’t know what Tourette Syndrome is, they think that it’s just swearing and I hear that too. I tell people that I have it and they’ll make jokes,” Crawford said. 

Committed to radiating awareness and acceptance of Tourette Syndrome, they’re here to help children and adults succeed. 

“Letting people know there is a place where they can get information and especially for kids who have ticks that make it harder for them in school,” Crawford said. “It’s a great thing for those people to be able to find a safe space where they’re not going to get mocked or made fun of for that.”

PATSA’s family camp is next weekend at the Black Rock Retreat in Lancaster County and while registration in closed, they have other annual events, including a virtual family retreat and their new 5K. 

The organization receives some state funding but it doesn’t cover all costs, so donations are always welcome. 

You can do so and learn more on their website at this link!