Lauren and Steven Lindenbaum, of Marlboro, have been the facilitators for the Middlesex/Union County Family Support Group, which meets bi-monthly at JFK Medical Center in Edison.
MARLBORO – Volunteers are an invaluable resource to any organization. This is especially true for the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), which relies on its strong volunteer base for mass mailings, assistance during annual walks and family retreats, exhibit tables at conventions and events with teachers and students at school-organized Disability Days.
In every instance, volunteers provide support, create awareness and offer assistance to those living with TS or trying to understand the misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and adults.
NJCTS volunteers also serve as support group coordinators – helping families, listening to their concerns and giving some direction with regard to not only the organization’s myriad programs and services, but the best approach in dealing with their child’s school. Often these support groups, which meet on a bi-monthly basis at five hospitals around the state, bring in speakers on a variety of topics pertinent to raising a child with a neurological disorder.
One of NJCTS’ volunteer families, the Lindenbaums, of Marlboro, has been facilitating the Middlesex/Union County Family Support Group at JFK Medical Center in Edison for the past decade. For most of that time, Lauren Lindenbaum took the lead. But recently, she’s passed on the baton to her 23-year-old son, Steven, who 11 years ago was diagnosed with Tourette Syndrome.
The help the Lindenbaums have provided the Central Jersey TS community over the years has been invaluable. From information and resources regarding 504 and IEP plans for school, to promoting advocacy against bullying through in-service presentations, Lauren and Steven have given their all to the support group attendees, which average anywhere from 4 to 10 per month.
“It’s very fulfilling to help someone else, to give them my knowledge and expertise,” said Lauren Lindenbaum, who originally attended the support group herself with her husband following Steven’s TS diagnosis. “To be in that environment and swap stories with people who are friends can mean the world to someone and their situation.”
Membership has increased on Steven’s watch, too – especially among children and teenagers. When he was younger, Steven never attended the support group with his parents. It just wasn’t something kids did. Now, he says they feel more open to talking about their issues and disabilities so they can be prepared to become better acclimated to an increasingly social world.
“It’s a wonderful thing to see kids more empowered about their disabilities,” said Steven Lindenbaum, who is a special education teaching assistant. “If they have any questions about how to make their school experience better, I’m able to explain to them how that works. I always tell them that there are other people who have it worse. When they hear that, they are open to sharing their experiences so we can attack the problems together. We’re all becoming stronger individuals and better advocates of people with Tourette because of that.”
More info about TS support groups in New Jersey is available by visiting www.njcts.org. The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is a not-for-profit organization committed to the advocacy of children and families with Tourette Syndrome and associated disorders such as OCD, ADHD, anxiety and depression. Dedicated to delivering highquality services to these individuals, NJCTS 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 ensure that individuals with TS are contributing members of society, NJCTS is committed to leading the promotion and development of diagnostic and treatment therapies and actively supporting research for a cure. In 2004, NJCTS received funding from New Jersey to create its Center of Excellence, which provides support for families, public outreach, awareness and education for schools and medical communities, and research into the cause and treatment of TS.