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The Pennsylvania Tourette Syndrome Alliance (PA-TSA) has scheduled an Information Expo May 15, 2014 from 6 - 8 p.m. at the Anthony M. Lombardi Education Conference Center located on the grounds of Monongahela Valley Hospital. This Awareness Month event is being sponsored by State Representatives Ted Harhai and Deb Kula.

Pictured are (l-r): Matt Lewis, Rachel Lewis, and Magnus Lewis.

PA-TSA is located in central Pennsylvania; however, they service the entire Commonwealth by providing information, education and disability advocacy for individuals with Tourette syndrome in Pennsylvania.

Rachel Lewis of Rostraver Township is a local representative, volunteer and board member of PA-TSA and is working closely with the State representatives, their staff and Monongahela Valley Hospital to plan this event, which will focus on bringing more awareness of Tourette syndrome to the Pittsburgh area.

To learn more about Tourette syndrome, or if you or someone you know can benefit from the services offered by the Pennsylvania Tourette Syndrome Alliance, please join us for this free session, which is open to the public. Please RSVP to Ted Harhai's office at 724-684-2939 or at mjsmith@pahouse.net by May 7th.

What is Tourette Syndrome (TS)?

It is an inherited, life-long neurologic disorder characterized by tics – involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way.

TS is often misunderstood and can be a complex disorder. Several conditions tend to accompany the diagnosis of TS. These include ADD/ADHD, OCD, sensory processing disorder, learning disabilities and handwriting difficulties.

These added diagnoses can make survival in school, the workplace and society very difficult. The services provided by PA-TSA are focused on increasing understanding of the disorder and providing proven accommodations and strategies so the child or adult with TS can succeed.

The tics of TS tend to wax and wane and often increase due to stress, anxiety, excitement or during puberty. Many adults report a decrease in symptoms, however a small percentage report no change.

There is no cure for TS and the FDA has approved only two medications to treat the disorder. There are many other medications that are prescribed to treat the symptoms. These medications vary in their effectiveness and have a number of unwanted side effects. In most case, medications are only used if the tics impede daily living, the ability to learn or a physically or emotionally harming to the individual.

A Local Story

Matt and Rachel Lewis found out about PA-TSA after their son Magnus, now 14 and an 8th grader at Belle Vernon Area Middle School, was officially diagnosed with TS when he was in the 3rd grade. Thinking back, they realized that Magnus was showing signs of the disorder as early as 1st grade. They learned more about Tourette syndrome and received the much-needed support from PA-TSA to help Magnus adjust.

In those first years, Magnus wanted to meet someone "just like himself" and was able to do that when he and his mom attended PA-TSA's annual camp in 2012. Magnus immediately made a friend, Dorian, who lives in Lancaster County and shares some of Magnus' symptoms. After that rewarding experience, Rachel felt she needed to do more to assist the Alliance, and she became a volunteer consultant to offer support and insight to other Pittsburgh area parents and their child's educators and administrators.

Rachel is also is a member of PA-TSA's Speakers Bureau, which provides in-service programs to school administrators and community organizations. Rachel is also trained to provide an age-appropriate program for the peers of a child with Tourette syndrome, and has done so for a couple of area school districts.

After assisting his mom in providing educational school programs, Magnus then became a member of PA-TSA's Youth Advocacy Program and takes it upon himself to educate his teachers at the beginning of each school year with his own personalized presentation. He shares information and answers question on how his Tourette syndrome may present in the classroom. His teachers have been more responsive, more understanding and more willing to accommodate him when needed. Magnus is an honor roll student and plays the baritone saxophone in the Belle Vernon Area Middle School Band and is looking forward to entering high school in the fall.