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.

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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.

Being rejected by someone else with Tourette

I haven’t written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven’t felt secure enough to write about it until now. It’s been a full year though and I feel like I have enough distance from it now and strength to not let it hurt me anymore.

A year ago, I was a sophmore in college who had come back to school after my first summer as a counselor at Camp Twitch and Shout. I felt empowered because I had made a difference in children’s lives who had gone though what I had, and I felt accepted and loved after being welcomed into the camp twitch and shout family. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself.

I joined a new student group on campus and opened up to them about how I was involved in the Missouri Tourette’s Syndrome Association. I didn’t tell them that I had Tourette’s, but I ticced enough that it was probably obvious. After one of the meetings, another girl in the club who was a year older than me came up to me and told me that she was a Tourette’s Syndrome Youth Ambassador and when I asked how she got involved, she told me that she had Tourette’s. I was so excited!

I told her I have TS, too, and that I wished I could have been a youth ambassador but I was too old when I found out about the program. Even though I recognized her as one of the people who interviewed during sorority recruitment for a sorority that I was rejected from and even though the people during recruitment from that particular sorority were not very kind to me, I was still excited.

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about camp and after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong?

Now that I had opened my mouth, did she think for some reason that I was just a really lame person who she didn’t want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as “cool” as she is.

Later on, I decided to send her a message.

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Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.

Finally focused!

For my first blog I wanted to share a little bit about when I was first diagnosed. I’ve always been a little twitchy, I started blinking my eyes and sniffing when I was in preschool and developed many more simple motor tics. Since I was young, nobody paid any attention to it. As I got older however, my tics became complex and starting causing problems with my grades.

At this point, I was in fifth grade and my little brother had already been diagnosed. I knew I had Tourette Syndrome, too, so I sat down with my mom and told her about it. A few minutes later she was on the phone with my neurologist scheduling an appointment!

When I reached sixth grade my tics were awful. I couldn’t focus, I was always holding my tics back, and they were hurting me. So I did research and decided to educate my class on my disorder. My class handled the information so well and treated me the same as everyone else! It was such a relief for me.

But through my research, I found out about the Youth Ambassador program and we found NJCTS. Now, my I’m doing fantastic and I’m so thankful for all of the people who helped me along the way!

Tic-tic BOOM!

Hello all! I’m going to be frank; I’m new to the blog-world. Please forgive me if I sound too formal/don’t sound formal enough/don’t interest you/etc. etc. etc. I’m trying this out, and we’ll have to see if I have ANY skill. Perhaps I’m the next “Reality Steve”. Who knows?

OK. Since I’m aware this is ACTUALLY a wholesome teen blog (by the teens, for the teens) about Tourette Syndrome, I’m going to change topics. Hi! I’m Sarah! *Cue the “Hiiiiiiii Sarahs”* I’m a 17-year-old high school senior. When I was 7, I was diagnosed with Tourette Syndrome in 10 minutes flat. My parents were left with an uncomfortable diagnosis, no direction, and a tic-ing time bomb (see what I did there?). Not knowing what to do, they decided to keep quiet. No one knew about my TS until I hit the third grade. Only then did we realize as a family that silence only led to confusion and misunderstanding.

Since then I’ve been certified as a Youth Ambassador for Tourette Syndrome, and I’ve spent a great amount of time and effort presenting to more than 3,000 children, teachers, and doctors in order to displace the myths and stereotypes associated with this medical condition. It’s been a long ride, but also a great one. Now I’m here.

I sing, dance, act, and play a host of sports. I love long walks on the beach, and I’m a total catch 😉 haha. However, jokes aside, I’m a girl who has learned, with a lot of practice, to overcome any obstacle Tourette Syndrome has ever thrown my way. I’m proud to say I can do anything and EVERYTHING I set my mind to, and I live for that challenge. My advice? Show everyone what you can do, and don’t apologize for everything that makes you great—including your TS. It’s a part of you. It’s a part of me. But it ISN’T ME. I’m greater than a diagnosis, stronger than the sum of my parts. I can’t wait to share myself with you.

Tic-tic BOOM!

2014 NJCTS Children’s Scholarship Award Essay: “Tourette is a Blessing in Disguise”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

My grandmother always told  me that every person  was put  on this  earth for a  purpose. Some people bring music to the world or find new  cures for different  diseases. I,  on the other hand,  was placed  on this  earth to  spread tolerance for  those living with Tourette Syndrome.

I could go on about how horrible it is to  have Tourette Syndrome  and how it  has been embarrassing, depressing  and sometimes painful. I could go on  about how it has negatively affected my life. However, I  am past that stage in my life.

Through my work as a Youth Ambassador  and a Patient-Centered Educator, I  have become confident about living life with this disorder  and have become grateful that I  was blessed with the opportunity to make a difference in the Tourette’s community. I will share that Tourette Syndrome has positively  changed my life.

Tourette Syndrome has molded me into the person I  am today. Having this disorder has brought  me to new  and exciting  places to meet amazing and inspirational people. I want to show people the positives over the negatives of living life with Tourette Syndrome.

Having Tourette Syndrome is like living your life  on repeat. Same tics every day, the same sideways looks from others, and the same  need to explain myself over  and over again. Every day I  share my story in order to  educate the world  about the disorder, to clarify that having Tourette Syndrome rarely entails shouting  curse words  and absurd phrases.

I  can truly say that having Tourettes Syndrome is a blessing in disguise. It  has brought me closer to my friends  and family. It  has brought me to make new friendships  and go places I never thought I would go. I  can confidently  say ” Hi my  name is  Grace Hawruk, and I have Tourette Syndrome.”