Academy Sets to Empower League of Extraordinary Youth

First Tim Howard NJCTS Leadership Academy succeeds

SOMERVILLE, NJ- “Show us your grit!” said Faith W. Rice as she watched the group of teens stand together for a photo.

Among the group- a pilot, a playwright, a professional actress, a classically – trained singer; just to name a few. Each one unique, but all unified by Tourette Syndrome (TS).

Having a neurological disorder in childhood that causes involuntary movements (tics) and is frequently accompanied by ADHD, OCD and mental health challenges forces an early maturity.

“Because kids with TS often refine their ability to focus at a very early age (often on suppressing tics), they have a broad range of extremely refined talents,” said Melissa Fowler MA, MEd, education outreach coordinator for the NJ Center for Tourette Syndrome (NJCTS). “They have tremendous dedication to their passions and hobbies.” Fowler had the task of developing curriculum to give this group of extraordinary adolescents the tools necessary to understand their disorder, learn to advocate for themselves and others- the mission of the Tim Howard NJCTS Leadership Academy.

“The Academy focuses on the three main areas of biology, psychology and the social components of having a TS diagnosis,” said Rice, executive director of NJCTS. “Participants will learn about the brain mechanisms behind Tourette, the psychological disorders that present challenges and the social aspects of having a stigmatized condition- we put a big emphasis on resilience.” Melissa Fowler, MA, MEd (upper right) leads a group discussion on empowerment during the Tim Howard NJCTS Leadership Academy at Rutgers University Collaborative Partnerships for the Tourette Syndrome Community.

Content was developed through consultation with educators, advocates, psychologists, occupational therapists and social workers. With their suggestions in place, Rice recruited leading experts while Fowler mapped out the program. Renowned genetic researcher Dr. Jay Tischfield spoke about neurobiology, Dr. Robert King of the Yale Child Study Center delivered a presentation on the biological implications of TS. Dr. Lisa Cox of Stockton University, herself living a vibrant life with TS , ran a workshop on overcoming the feelings of social isolation that come with such a visible disorder.

Each of the 22 participants- who hailed from New Jersey, New York and Pennsylvania contributed thoughtful questions and were eager to share life-skills tips with one another. The teens were divided into groups led by “coaches”- young adults with TS living successful lives.

Given the opportunity to ask questions in panel discussions with experts and coaches, the young adult mentors were grilled on the major concerns of teens everywhere: dating, driving and college. And to their delight, the unanimous conclusion achieved over the three-day program at Rutgers University, is that you can drive, date and do well in college despite Tourette Syndrome.

“Having a role model in the coaches meant so much to each of the teens,” said Rice, “Knowing that there’s light at the end of the tunnel, that you can live a happy and successful life with TS is a reassurance that’s invaluable.”

“I wanted them to feel like they had learned enough to become experts both about TS (and comorbidities) and about themselves; able to speak confidently about their own strengths and obstacles, to recognize what they need to be successful and advocate for it; to feel comfortable enough about themselves that they feel resilient, able to face a public who is mis-educated and misinformed about TS (and its associated disorders).” said Fowler.

Over the course of the weekend, participants spoke of resilience, courage and grit. With the lessons and skills imparted through the Academy, it’s no doubt this inaugural class will continue to show their grit in the skies, on the stages, in the classroom and beyond.

The 2015 Tim Howard NJCTS Leadership Academy will take place from August 6-9 at Rutgers University. To learn more, or to become involved in shaping the future for the 1 in 100 children with symptoms of TS, visit www.njcts.org or call 908-575-7350.