{"id":3315,"date":"2013-12-11T15:36:02","date_gmt":"2013-12-11T20:36:02","guid":{"rendered":"https:\/\/njcts.org\/tsparents\/?p=3315"},"modified":"2013-12-11T15:36:02","modified_gmt":"2013-12-11T20:36:02","slug":"south-jersey-family-hit-hard-by-tourette-syndrome-throws-support-behind-nj-walks-for-ts-program","status":"publish","type":"post","link":"https:\/\/njcts.org\/tsparents\/south-jersey-family-hit-hard-by-tourette-syndrome-throws-support-behind-nj-walks-for-ts-program\/","title":{"rendered":"South Jersey family hit hard by Tourette Syndrome throws support behind NJ Walks for TS program"},"content":{"rendered":"

\"\"<\/a>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.<\/p>\n

Theodoropoulos, of Marlton, N.J., and her daughter have solicited the knowledge of noted TS experts Drs. James Leckman of Yale University in Connecticut \u2013 \u201cHe\u2019s my daughter\u2019s closest friend and has been a great support,\u201d the elder Lori has said \u2013 and Anthony Rostain of the Children\u2019s 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 \u2013 particularly in the area of accepting that Tourette Syndrome is a big part of her life.<\/p>\n

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.<\/p>\n

It\u2019s the balance between those definitions that led Theodoropoulos to throw her support behind the New Jersey Center for Tourette Syndrome & Associated Disorders\u2019 (NJCTS) annual NJ Walks for TS awareness and fundraising campaign, which took place November 23 at Mendham\u2019s Borough Park.<\/p>\n

The 4th annual event attracted its largest crowd to date \u2013 with more than 400 people showing up despite cold, breezy conditions \u2013 and tens of thousands of dollars being donated. Theodoropoulos believes the time is now to capitalize on that kind of momentum.<\/b><\/p>\n

\u201cI 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,\u201d said Theodoropoulos, whose \u201cTeam LaLa\u201d raised $750 to benefit NJCTS\u2019 School In-Service Program. \u201cPeople 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.\u201d<\/p>\n

While Theodoropoulos and her daughter were unable to attend the event in person \u2013 the more than two-hour ride from their South Jersey home would have severely agitated Lori\u2019s tics, Theodoropoulos said \u2013 they know the money raised will go to good use. NJCTS\u2019 School In-Service Program \u2013 which educates students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying initiatives and self-advocacy \u2013 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\u2019s inception in 2000.<\/p>\n

\u201cThe School In-Service Program is essential to NJCTS\u2019 goal of ensuring every student, teacher, school nurse and educational support staff in New Jersey understands what Tourette Syndrome is, what it isn\u2019t and the care those affected by it should receive in the school setting,\u201d NJCTS Executive Director Faith Rice said. \u201cThis 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.\u201d<\/p>\n

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<\/strong><\/a> and fundraising<\/strong><\/a> information for that event are now open and under way, so get in on the action today!\u00a0For more information about the NJCTS School In-Service Program or to schedule a presentation for your school, please call 908-575-7350.<\/p>\n

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