The 5th annual NJCTS Tim Howard Leadership Academy took place at Rutgers University from August 2-5. The intensive four-day training promoted self-advocacy, self-leadership, resilience and grit—all important skills to succeed while living with Tourette Syndrome.
Tourette Syndrome (TS) is a neurological disorder characterized by uncontrollable movements and vocalizations known as tics. As many as 1 in 100 people show signs of a tic disorder like TS, which is frequently accompanied by mental health disorders including ADHD, OCD, and anxiety.
Created in 2014 in partnership with legendary goalkeeper and TS advocate Tim Howard, currently of the Colorado Rapids, the Academy is the only leadership program for teens diagnosed with TS in the nation. The 24 teens who participated represented New Jersey, New York, Pennsylvania, Florida, Texas, Minnesota, California, Canada and Australia.
Howard, a New Jersey native who was diagnosed with TS as a kid, surprised the teens by calling in to video chat with the group. During the 30 minute conversation, he fielded questions about everything from disclosing his TS publicly to his plans after retirement. He told them that in his mind, TS “chose me,” so he has always accepted the disorder as a part of who he is.
Academy participant Sam Regen of Robbinsville asked Howard for advice on how to handle TS as you grow up. “The world is an awesome place. It can be good, but it can be scary. There can be some bad people out there,” Howard answered. “Surround yourself with people that are compassionate and understand who YOU are. The rest of them don’t matter.”
Throughout the four days, participants had the opportunity to learn from neurologists, psychologists, social workers, and others about their diagnoses. In addition, sessions were conducted on asking for and receiving accommodations at college and in the workplace. During their downtime, the teens formed connections with new friends through small group activities or a friendly game of kickball.
In smaller “Team Talk” sessions with Academy coaches – young adults with TS with personal experiences to share –powerful and emotional discussions continued and each night participants worked on their final advocacy projects which were shared on the final day.
“We want them to leave as experts with the ability to advocate for themselves and be ready to face an often misinformed public,” explained Academy Director Melissa Fowler. “With the lessons and skills they gained, and the goals they’ve set for themselves, this class will step up to be the voice of awareness in their own communities.”
The NJCTS Tim Howard Leadership Academy takes place each August at Rutgers University’s Busch Campus. To learn more, visit www.njcts.org/teamup. The 2019 Academy application will be available later this Fall.
The NJ Center for Tourette Syndrome and Associated Disorders, the nation’s first Center for Excellence for Tourette Syndrome, is a not-for-profit organization committed to the advocacy of children and families with Tourette Syndrome and its associated disorders. Dedicated to delivering high quality services to these individuals, the Center recognizes the importance of educating the public, medical professionals, and teachers about this disorder through programs and affiliations with public schools, health centers, and universities. Visit www.njcts.org for more information.