For nearly a decade, children and families affected by Tourette Syndrome and its associated disorders have converged upon YMCA Camp Bernie in beautiful Hunterdon County each June for a few days of fun, learning and the realization they are not alone in their daily battles.
It’s been one month since the 9th annual Family Retreat Weekend took place, and many of the nearly 50 families who attended the event put on by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) still can’t stop talking about it – especially the kids, many of whom already have asked their parents to circle June 6-8, 2014, on their calendars for the 10th anniversary weekend.
“The weekend was wonderful. The kids did not want to leave, and neither did my husband and I,” said Anne Marie Palmeri, whose family attended the event for the first time. “I think it was a great experience for my older son. It made him feel like he was not alone. He was able to talk to other kids about having TS. It was just a great family experience, and we all agreed that we would make this a family tradition each year.”
Families had plenty of opportunity to bond while participating in many of the camps numerous activities, including a wall climbing, swimming, canoeing, volleyball, basketball, archery, arts & crafts, yoga and much more. There also was a campfire and a Talent Show led by DJ Harry Hubert – always two of the biggest hits at the Family Retreat Weekend.
Many of the parents participated in the two workshops presented during the weekend: “Family Dynamics: The Impact of Special Kids on Marriage and Siblings with Drs. Gayle Cox and Lisa Forman, and “The Doctor Is In” with Dr. Tolga Taneli, a psychiatrist from the University of Medicine and Dentistry of New Jersey with years of experience in the TS field.
Following the seminar with Drs. Cox and Forman, parents had the opportunity to attend a panel discussion headlined by five young adults, who shared their stories of struggle and success with Tourette Syndrome. Capping the educational portion of the weekend was a series of team-building exercises for children, led by five PhD students working in the TS genetics research program at Rutgers University.
“We enjoyed so many aspects of camp. It is such a great combination of learning, meeting people and having fun,” said Adam Regan, who attended camp with his wife and two children. “The experience of being around so many others with TS is something that is quite extraordinary. We now want to try yoga as a relaxation technique. And the mentor panel was by far the most rewarding activity to attend. This weekend was just a great experience for us. Meeting other families who deal with the challenges of TS is such a huge help.”
Aiding NJCTS in putting on the camp was the Brad Cohen Tourette Foundation, which provided a generous grant to help fund the weekend, and sponsors such as the HAPI Foundation, ShopRite, Wegmans and Costco. Playing a crucial role in the weekend’s success also were the more than two dozen hard-working volunteers, many of whom stayed the entire time once again make the Family Retreat Weekend the “best weekend of the year.”
“It meant everything. We have been looking forward to this weekend for so long. To be with families that are going through the same things that we are is so critical to our emotional, physical and mental health,” said Ed Baumann, who helped out with the talent show and attended the weekend with his wife and two children. “It is so good for the kids to be around others just like them. Camp Bernie is probably the one weekend where our children can just truly enjoy themselves without feeling like they are being stared at or judged. Can you imagine how that must feel? Words just cannot express.”