On Thursday, May 17, Amanda Silvers and Charles Griebell sat in front of the New Jersey State Assembly’s Health Committee and urged them to pass a joint resolution (AJR44) permanently designating June 4 as “Tourette Syndrome Awareness Day” in New Jersey.
A graduate of East Brunswick High School, Amanda was diagnosed with Tourette Syndrome (TS) when she was five years old. As a teen she became involved with the NJ Center for Tourette Syndrome (NJCTS) as a Youth Advocate, speaking to students, teachers and medical professionals about living with TS. After high school she signed on as a coach at the NJCTS Tim Howard Leadership Academy and has been a mentor to kids with TS at the NJCTS Family Retreat.
“I am passionate and open about sharing my story and educating others about TS so they learn that there are people in the world just like them,” she said. “They are not alone.”
Charles became involved with NJCTS as a freshman in high school, about 4 years ago when he was newly diagnosed with TS. Since then he trained as a Youth Advocate and has been presenting in New Jersey school classrooms about TS.
“I enjoy speaking to students because I know how it feels to be different,” he said. “It is a great feeling when I can connect with another child suffering from TS to make them feel not so alone and offer them hope and support.”
Amanda also lives with some of the most common associated disorders of TS: OCD, ADHD and anxiety. None of these things have stopped her from forming meaningful friendships, joining sports teams or finishing college. She recently completed her bachelor’s degree in psychology at Ramapo College.
“My ultimate career goal is to work in the educational community providing services to students with disabilities,” said Amanda. “I have had personal experiences where people in special services were not educated about Tourette’s and other disorders. It inspired me to want to provide that knowledge and be a resource for other students so they won’t have to face the same hardships.”
Charles will be graduating from high school in June and will off to Rutgers, his first choice, in the fall to study precision agriculture and meteorology.
The resolution was passed by the Assembly Health Committee and goes on to the full Assembly for a vote. Our advocates will be addressing the Senate Health Committee next week.
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. To learn more about Tourette Syndrome and the programs available from NJCTS, visit www.njcts.org.