Jen Heicklen and Maureen Faber have a lot in common. They both own local businesses—Jen and her husband Steve own Jersey Pools and Spas and Maureen owns Medford Fitness. They both support their community. They both have children. But what brings them together these days is the fact that they both have daughters with Tourette Syndrome.
Together, they’re the force bringing NJ Walks for TS to Medford Lakes on September 20th.
“We consider ourselves very fortunate as this disorder is not life threatening, however it is heartbreaking,” said Jen of her two daughters Ana and Ava.
Like many kids with TS, Maureen’s daughter Hayley has dealt with feeling socially unaccepted.
“As a parent, I’m compassionate for every ‘Hayley’ in the world, and for every parent who also helplessly watches their children battle with the consequences of this disorder,” said Maureen.
Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, mental health issues and learning disabilities. As many as 1 in 100 children exhibit symptoms of TS, with onset of symptoms beginning around age 7 which concurrently challenge a child’s physical and emotional well-being.
“There are almost as many people who suffer from TS as there are people who suffer from diseases more familiar to the public such as autism,” said Maureen. “But, sadly, there are not nearly the amount of advocates who have committed to help the children who are plagued by Tourette.”
NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) was founded with this need in mind by Faith W. Rice, the mother of an adult son with TS. Over the past decade, NJCTS has established programs to provide support for families the TS community while training doctors and educators to innovate identification and treatment strategies. In 2010, NJ Walks for TS began as an advocacy event started for kids, by kids to benefit kids with TS. Since then, NJCTS has brought NJ Walks to North and Central Jersey. Later this month, the 5K walk and family fun run will make its official South Jersey debut at Beach 1 in Medford Lakes.
“My involvement in NJ Walks for TS complements my personal mission to raise awareness, in an effort to gain the support of the public—which will lead to greater scientific understanding of TS, foster social acceptance, and advance treatment options,” said Maureen.
“It has been a long road in the Heicklen House, just as in any home where there are special need issues,” said Jen. “The difficulty is not in the tics themselves, but in seeing the girls lack of confidence when ridiculed or excluded. But, this has changed over the last year due to the girls dedication in educating their peers and community about TS.”
Jen’s daughters Ana and Ava have become trained NJCTS Youth Advocates and have learned to fight the stigma attached to TS by sharing the facts about the disorder on behalf of themselves and others with TS. NJCTS Youth Advocates deliver school presentations to their peers and participate in hospital grand rounds to educate doctors about the difficulties of life with TS.
All proceeds from NJ Walks for TS will benefit these programs which are part of NJCTS Education Outreach.
“We cannot tell you how this advocacy work the girls are doing has built their confidence, they are empowered. You can help them empower others by joining us for this great day,” said Jen. “You can help by signing up for the walk, being a sponsor, or volunteering to help on September 20th.”
Registration and sponsorship information is available at www.njcts.org/walk. NJ Walks for TS at Medford Lakes will take place Sunday, Sept. 20 at Beach 1 (Vaughan Hall) on Tabernacle Road rain or shine. Check-in begins at 8 a.m. All ages and abilities are welcome.
“As a family who has supported their community endlessly, we respectfully request that you all support us with this walk,” said Jen.
Maureen concluded, “one in every hundred children living in New Jersey suffers from TS, battling every day in hopes of a cure—participation on Sept. 20th will keep tens of thousands of children encouraged as we collectively raise awareness.”
