Talking to teens about TS is a blast!

On January 20, I delivered two presentations to more than 150 seventh-graders at Memorial Middle School in Fair Lawn! I talked a lot about how my life has been affected by Tourette Syndrome and how it has been a big part of every aspect of my life. I have been one of NJCTS’ Youth Advocates over the past several years, and I love doing it!

My presentations have been taken in by more than 1,000 young minds, all of whom know more about TS today — and that’s what it’s all about, awareness and advocacy! Here are some pictures from January 20:

NJ Walks for TS at Mendham photos … we had fun!

Here are some photos of me and the other Youth Advocate Co-Chairs from the 5th annual NJ Walks for TS at Mendham on November 15. Hundreds of people came out to support the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), TS awareness and Tourette education for every school in New Jersey!

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Tim Howard NJCTS Leadership Academy was amazing!

Two weekends ago, my sister and I went to the Tim Howard NJCTS Leadership Academy. It was such an amazing experience. I made so many new friends and I learned so much! We had the opportunity to hear from medical professionals and learn more about our disorder. We worked hard while we were there, but we had so much fun. We immediately bonded with everyone there, and I would highly encourage others to go!

10 problems only people with Tourette Syndrome understand

1. Hearing this yet again: “Oh so you can swear whenever you want? That’s so awesome!”

2. Being asked to “hold still” while having your picture taken

3. Having a vocal tic and yelling “Hey” out the window as two cute guys are walking by…and then the light turns red…

4. When you can’t just say it, you have to SCREAM it!

5. When you knock over opened containers on a regular basis

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Tourette Syndrome advocacy at New Jersey Mitzvah Day

These are pictures of me speaking on behalf of the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) at the January 20 Mitzvah Day at Congregation B’Nai Israel in Millburn, N.J.

I spoke about how people from North Jersey can connect with other Tourette Syndrome families in their area; get referrals for doctors who specialize in treating TS; and learn about the various support and educational services NJCTS provides families, educators and medical professionals throughout New Jersey.

It went well. I shared a lot of information and may have helped a family or two. I would really like to get more involved and start doing Youth Ambassador presentations in the local schools.

New song & video: “Four Months”

Here are the lyrics to my new song Four Months. I hope you like it!

Hello September

You have made my wallet thicker

But I don’t feel any richer

Watch the sky as Saturn bickers with Mars

Count the freckles in the stars

Capture midnight in a jar

Drink it at the local bar

Hello October

So much for staying sober

Four thirty in the morning

And these TV shows are boring

Look at that

The boy down the road took a bath

And hung himself with towels on the rack

I take my coffee black for a reason

Hello November

I didn’t know God was a smoker

‘Til he asked to use my lighter

So we sat all through the night with our cigarettes

He leaned over and said

“I gave you precious bones and flesh”

“Your lungs are pumping ‘cuz mine are dead”

When he left I was alone

I never said hello ‘cuz December came to slow

Oh what a way to go

Teens4TS Showcase: 3 NJ teens educate 120 Yale docs on Tourette

Between them, teenagers Grace Hawruk, Tommy Licato and Tess Kowalski have delivered more than a dozen presentations on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS). They’ve spoken to students, teachers, doctors and residents about what it’s like to live with TS – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 kids.

But prior to October 8, each of their presentations had taken place at hospitals across New Jersey. On this particular Tuesday, however, the trio was invited to speak at one of America’s leading institutions of higher learning – Yale University. Their talk about Patient-Centered Medical Education at the Yale Child Study Center not only was well-received by the nearly 120 faculty and trainees of the Yale School of Medicine, it was lauded and encouraged to be replicated – nationwide.

“In an academic clinical research center – one that is the birthplace of much of the important work into the causes and treatment of TS over the past 40 years – it was very important for clinicians and researchers to hear from the teenagers themselves,” said Dr. Robert King, a Professor of Child Psychiatry at the Yale Child Study Center and a key partner of NJCTS. “There is a lot of excitement here about the thought of the NJCTS Patient-Centered Medical Education program being used as a model with children and families affected by other clinical disorders.”

Patient-Centered Medical Education is a unique education program that provides doctors and physicians in training an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety. Continue reading