Lori Theodoropoulos has been through a lot with her now 28-year-old daughter, also named Lori. The younger Lori was diagnosed with Tourette Syndrome at age 6, has been asked to leave support groups because of the invasiveness of her tics and has been at the mercy of a health-care system unable to find the right medication and general therapeutic resources to help her.
Theodoropoulos, of Marlton, N.J., and her daughter have solicited the knowledge of noted TS experts Drs. James Leckman of Yale University in Connecticut – “He’s my daughter’s closest friend and has been a great support,” the elder Lori has said – and Anthony Rostain of the Children’s Hospital of Philadelphia and the University of Pennsylvania, each of whom has given of his time freely over many years to help Lori. But despite that sustained level of excellent assistance and care, Lori continues to struggle – particularly in the area of accepting that Tourette Syndrome is a big part of her life.
Acceptance is a concept with more than one definition to those affected by Tourette: They must come to terms with how Tourette Syndrome has shaped their lives while also desiring a favorable reception by loved ones, educators, medical professionals and the general public regardless of their condition.
It’s the balance between those definitions that led Theodoropoulos to throw her support behind the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) annual NJ Walks for TS awareness and fundraising campaign, which took place November 23 at Mendham’s Borough Park.
The 4th annual event attracted its largest crowd to date – with more than 400 people showing up despite cold, breezy conditions – and tens of thousands of dollars being donated. Theodoropoulos believes the time is now to capitalize on that kind of momentum.
“I have seen the enormous strength of support for other disorders. But I think that Tourette Syndrome has gotten the short end of the stick here,” said Theodoropoulos, whose “Team LaLa” raised $750 to benefit NJCTS’ School In-Service Program. “People are not aware of the great impact on the life of a child, an adult and their entire families and extended families. There needs to be wider support for Tourette Syndrome, and this event is one way to accomplish that.”
While Theodoropoulos and her daughter were unable to attend the event in person – the more than two-hour ride from their South Jersey home would have severely agitated Lori’s tics, Theodoropoulos said – they know the money raised will go to good use. NJCTS’ School In-Service Program – which educates students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying initiatives and self-advocacy – has reached more than 60,000 students and educators across the state through classroom training and participation in myriad conferences, including the annual New Jersey Education Association Conference in Atlantic City, since the program’s inception in 2000.
“The School In-Service Program is essential to NJCTS’ goal of ensuring every student, teacher, school nurse and educational support staff in New Jersey understands what Tourette Syndrome is, what it isn’t and the care those affected by it should receive in the school setting,” NJCTS Executive Director Faith Rice said. “This program has been highly successful to date, but there are many more students and educators to reach, and we cannot do it without the continued support of the Tourette Syndrome community through events such as NJ Walks for TS at Mendham.”
The NJ Walks for TS program is scheduled to expand Sunday, April 6, when the first NJ Walks for TS at Princeton takes place at Mercer County Park. Registration and fundraising information for that event are now open and under way, so get in on the action today! For more information about the NJCTS School In-Service Program or to schedule a presentation for your school, please call 908-575-7350.