Youth Wish for Crowd of Support at NJ Walks for TS at Medford Lakes

Ava and Anna Heicklen with Tim Howard at Team Up with Tim Howard, kicking off a year of TS awareness.

If you ask young people what they wish for, many of them are pre-occupied with the material wonders of childhood. But for three girls in the Medford area, their simple request is far from child’s play.

They’re inviting everyone who reads this to stand with them on September 20th in support of a large community of children in New Jersey living with a misunderstood neurological disorder.

They are the inspiration behind the first South Jersey walk to benefit the Tourette Syndrome community. NJ Walks for TS at Medford Lakes is an off-shoot of popular NJ Walks events in North and Central Jersey by the NJ Center for Tourette Syndrome (NJCTS).

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. TS is frequently accompanied by ADHD, OCD, mental health and learning disabilities. NJ Walks for TS was founded for kids, by kids and all proceeds from the event will support the Education Outreach Programs of NJCTS which deliver in-service trainings to hospitals and schools across the state, youth leadership training and scholarships.

Jen Heicklen of Medford Lakes and Maureen Faber of Medford are the moms behind the event and their daughters are following in their footsteps in bringing the public’s attention to TS.

“Ever since my little sister was diagnosed, too, I wanted to help spread awareness,” said 11-year-old Anna Heicklen. “I thought the walk would be a great way to do this.”

Ava Heicklen, 10, said she’s part of the movement because Anna “wanted us to work together to help teach our friends and school about Tourette.”

Through NJ Walks for TS at Medford Lakes, they hope to raise support and awareness of TS, which is an often misunderstood condition.

When asked what she’d like the public to understand about TS, Anna replied, “It isn’t easy, it interferes with your daily life. I just want people to be understanding.”

Hayley Faber, who is now a college freshman, adds “the more people understand about TS, the more accepting they are which makes it easier for kids with to explain things to our friends.”

Her hope is that the event will educate the community so that “it makes it easier and more comfortable for kids who have TS to live with this disorder.”

Ava, speaking on behalf of the 1 in 100 school aged kids with TS said, “We are not different from you. Our brains are just wired differently.”

All three girls invite kids and their families to gather on September 20th to learn more about TS and to stand up for the 20,000 New Jersey kids with TS and its associated disorders.

“We want everyone to support us so my sister and I can continue to spread awareness in the schools,” said Anna. “It would mean the world to us to have a ton of people to show up and support us.”

Ava concluded, “Because it would show that people support us like we support them.”

Registration begins at 8 a.m. at Vaughan Hall on Tabernacle Road, pre-registration is suggested at  All registrants will receive a free, one-month family membership to Medford Fitness.

We love teaching kids about Tourette Syndrome!

My sister Sarah and I did a New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Presentation for more than 150 7th-graders last week at Galloway Township Middle School, and to put it bluntly…we killed it. :)

The presentation went great. The audience really learned something and thought this was a great presentation to talk about. The kids were really into it and asked a lot of questions.  The Vice Principal, teachers and guidance counselor loved it. They said they want us to come back next year for the incoming 7th grade! Here are some pictures:

I’m still at it!

5 years post National Youth Ambassador Training in Washington, DC and I am still at it!

Following my fall semester at SUNY-Binghamton I was asked to return to Memorial Middle School in Fairlawn, N.J., to speak with the 7th-graders about Tourette Syndrome and bullying. During the back-to-back presentations, I had the opportunity to tell my TS story, as well as explain what the disorder is and why you should not bully anyone.

The students were engaged throughout the entire presentation and had a bunch of questions. For example:

  • Were you ever bullied in school?
  • Do you still tic?
  • Do you know alot of other people with TS?

They were all shocked at how difficult it was to hold in a tic when I compared it to a scratch on their head and did not allow them to touch their heads for two minutes; everyone was squiriming in their seats.

All of the students promised me that they understood my message and that they would not bully their peers.

I encourage all of you readers to speak out about Tourette Syndrome, bullying and your own personal story. If you have any quesitons about how to get involved, please contact the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).

Our connection with Tim Howard & NJCTS … in print!

Hi everyone! Some of you may have seen this article on last week that talked about “a mother’s connection between her children and a soccer legend.” I just wanted to share with you the e-mail my mom sent the reporter that led to the wonderful story. I hope you enjoy it!

PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, "The Keeper: The Unguarded Story of Tim Howard," about the soccer legend’s life with Tourette Syndrome.
PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, “The Keeper: The Unguarded Story of Tim Howard,” about the soccer legend’s life with Tourette Syndrome.

I know you saw me in the emotional place of just having seen my children beautifully described in a national book, but bringing it home and quietly having the time to read Tim Howard’s book has been a very rewarding experience.  Of course it’s a story of his life in the world soccer stage, but I know that very close to his heart is Tourette/OCD advocacy.

He describes extremely well what it feels like to have tics, sensory issues and compulsions — something that so few people understand.  He also describes his own evolution as a TS advocate and wanting to keep that cause central to his work and how that advocacy grounds him.

It started with contacting the amazing and wonderful Faith Rice (the director of the NJCTS) many years ago, and continued with winning a $50,000 Pepsico grant to support programs for kids with TS (which has ultimately led to the development of the unique and extraordinary Tim Howard Academy —  and, and also joining the NJCTS board of directors so that he can help very directly.

It’s been 3 years since our trip to the UK to meet Tim Howard.  Today, Tess is 15, and is homeschooled; Paige is 11 and attending public school and is thriving.  In many ways our trip to meet Tim Howard (and his mom, who is lovely, too) still looms large in our lives.

Continue reading

Youth Ambassador applications are now available for 2015!

TSA seeks at least one teen and parent/guardian team from each TSA chapter (or at least one team per state not served by a TSA chapter) to attend the upcoming YA Training. The Training for teens and their parent/adult guardian will take place March 10-12, 2015 at the Crystal Gateway Marriott in Arlington, VA.

The TSA Youth Ambassador Training is a two-day comprehensive training program aimed at creating exceptional teen leaders and TS advocates. Youth Ambassadors will receive guidance on speaking in public, on how to give a concise presentation on TS and presentation logistics. The Training also includes participation in TSA’s annual National Advocacy Day.

This is an excellent opportunity for interested teens to learn public speaking, build friendships with other teens involved in the program, gain leadership and advocacy skills, and represent the Tourette Syndrome community as they raise awareness through YA Program activities. Click here to download the application.

Your completed application should be submitted to your local Chapter. Applicants residing outside a chapter area can email or mail completed applications to TSA c/o Michelle Gutmann. All applications must be submitted no later than Friday, November 21, 2014.