Nearly 200 families gathered for a time of relaxtion, arts, crafts, games, activities
and a chance to learn more about Tourette Syndrome from experts and each other
LEBANON TOWNSHIP – Donna Friedrich and her family have been at every one of the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) family retreat weekends at YMCA Camp Bernie since the tradition started in 2005. They’ve heard every laugh, gotten to know almost every camper and participated in nearly every activity.
Emily Golden and her family, of West Orange, on the other hand, experienced the family retreat weekend for the first time this year. Despite only being at Camp Bernie as day campers on Saturday, June 8, the Goldens felt as if they had been attending camp just as long as the Friedrichs.
The Friedrichs, of Pompton Plains, can certainly relate. Their son, Drew, was 11 when they first came to the camp and still was relatively new to Tourette Syndrome.“My daughter has Tourette, and camp for us is all about meeting other people who experience the same challenges that she does and just getting outside and having fun,” Golden said as her 7-year-old daughter, Maddie, who was diagnosed with TS when she was 5, steadied her stance during a successful round at the archery range. “We have met many great people who we feel like we have known longer than just a couple of hours. This is a wonderful place, and we are having a great time.”
Now, at 19 and getting ready for his sophomore year at the County College of Morris, Drew is a volunteer at the camp – making his mother very proud – and spent quite a bit of time with the younger kids on the volleyball court.
“We love Camp Bernie because it’s the first place our son experienced other children with Tourette. We had never seen another child with Tourette or experienced this kind of atmosphere. It was freeing,” Donna Friedrich said. “It was a place where he could be himself and we could come and share with other families what our trials were, what our triumphs were, and hear a little bit about what they had been going through as well.”
Friedrich hopes the Goldens and other first-time families like them return year after year like her family has because she believes each year has been better than the one before.
“It’s been quite a life-changer coming here every year, meeting new families and getting to see old friends again,” Donna Friedrich said. “To watch my son grow up and be free to come back, not only has he gained from Camp Bernie, he’s also giving back. He’s worked with the juggling team here and gotten together with the kids to encourage them when he sees that they’re down a little bit. That’s what this place is all about.”
Representatives from the Cell and DNA Sharing Repository at Rutgers University were on hand Saturday to take blood samples from more than 20 families willing to share their DNA with the repository so Tourette Syndrome researchers and scientists at 26 collection sites around the world can access it.The annual family retreat weekend also is about fun, and plenty of it was to be had from the time the campers arrived Friday night through the time they departed Sunday afternoon. In addition to archery, the lengthy activity weekend-long list included rock climbing, a giant free-fall swing, beach volleyball, canoeing, swimming, rock painting, arts and crafts, a nature walk, nightly campfires, a Brazilian percussion performance and the always popular talent show.
This June, the repository – which was founded by NJCTS and Dr. Jay A. Tischfield, the Director of the Human Genetics Institute at Rutgers, and recently was federalized to become the National Institute of Mental Health Sharing Repository – is celebrating its fifth anniversary.
Graduate students from the Rutgers Graduate School of Applied and Professional Psychology (GSAPP) also gave several valuable talks that spoke about the importance of social skills groups and learning more about how Tourette Syndrome can affect not only the individuals who have it, but also the families and friends surrounding them – a theme that numerous families in attendance echoed when asked about their camp experience.
Also on the educational front, Dr. Meir Flancbaum, PsyD, a postdoctoral fellow at Behavior Therapy Associates in Somerset, on Sunday provided and overview of Habit Reversal Therapy – including its main components, treatment indicators and scientific support. Also presenting on Sunday was Jayme Shelton, a part-time NJCTS employee and a student of the GSAPP program at Rutgers. Shelton discussed mindfulness, deep breathing and progressive muscle relaxation as ways to assist with anxiety, distress or discomfort associated with Tourette Syndrome or its associated disorders.
All in all, it was a fantastic weekend for everyone involved and one that won’t be soon forgotten, according to four-time Camp Bernie attendee Alissa Letts of Hillsborough.
“It’s just such a wonderful, supportive, relaxed environment for the children. They can be free to try things that they ordinarily wouldn’t do in an environment where they will not be judged or pressured,” said Letts, who attended with her husband, Eric, and 16-year-old son, David.
“For me and my husband, it gives us a chance to chat with other families who are experiencing the same challenges,” added Letts, whose family had an exciting week on behalf of NJCTS – on Tuesday, June 4, accepting the annual Tourette Syndrome Awareness Month proclamation from Senator Christopher “Kip” Bateman. “We get to share how we’ve handled it and hear how they’ve handled it, and it’s just fantastic.”
For more testimonials about the family retreat weekend at Camp Bernie, please visit www.njcts.org or NJCTS’ TSParentsOnline blog at https://njcts.org/tsparents. To view the complete family retreat weekend photo gallery, please visit the NJCTS Facebook page at http://www.facebook.com/TouretteSyndrome. For more information about the weekend or any of NJCTS’ programs and services, please visit our website or call 908-575-7350.
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the Tourette Syndrome community.