Dear Sen. Frank Lautenberg:

I support S. 2321 (“A bill to amend the Public Health Service Act to provide for the expansion, intensification,”) because…we are seeing more children diagnosised with Tourette Syndrome. As a school nurse and a parent of an adult child with TS, it is important to educate people about TS and continue the research involved.

AnnD
New Jersey’s 5th District 

The very next day, the following message appeared underneath it on POPVOX:

This letter was delivered to Sen. Frank Lautenberg [D, NJ] on 5/8/12.

See? Your letters to the U.S. Senate ARE heard, and our senators ARE interested in hearing what we have to say about Tourette Syndrome. The more letters we send in, the more likely they are to co-sponsor this bill and get it sent for a vote in the Senate. Log on to POPVOX today and share your opinion!

Tourette Syndrome is a misdiagnosed, misunderstood neurological disorder that affects 1 in 100 people, especially teenagers. Marked by involuntary body movements and vocal sounds called tics, Tourette Syndrome affects more than 200,000 American families. Also affecting those families are the many associated conditions such as OCD, ADD, ADHD and anxiety.

So take a moment today, or at any time during this month, to show your support for those who have Tourette. There are scores of different ways to do that. Here are a few:

• Leave a comment on one of these blog entries. The people that write them would love to talk with you about Tourette Syndrome.
• Head to the New Jersey Center for Tourette Syndrome website and check out the myriad programs and services offered for those with TS — not just in New Jersey, but around the United States and world, too.
• Go to POPVOX and check out the pending TS legislations – H.R. 3760 and S. 2321– and show your support for them by leaving a comment, which will be sent directly to your U.S. Congressman.
• Head to the Definite Possibilities website, started by a teen with TS, and buy a Tourette Syndrome pin for just $6.
• Want to take part in this blog personally? Send an e-mail to parents@njcts.org and ask to be a blog contributor.
• Head over to our Facebook page and give us a “like.” Or, wander on over to our Twitter page and “follow” us.
• Lastly, leave a comment on THIS blog entry and tell us about how Tourette Syndrome has impacted your life. We would love to hear your story.

“I didn’t realize people with these type of disabilities suffered a lot from other people who did not understand about it.”

“After watching ‘Head of the Class,’ I learned a lot about Tourette Syndrome, but you went more in-depth with the facts.”

“My cousin has Tourette, and I could never understand him, but after your presentation I understand how he feels.”

“I learned a lot about Tourette Syndrome! I enjoy writing fantasies as well! You really inspired me to become a better writer. Maybe I’ll write a book one day and send it to a publisher!”

Wow! Tess was just blown away and so proud! She really felt like she made a difference in people’s lives that day!

Then, at age 7, my daughter was diagnosed with OCD. The OCD has become increasingly more of an issue than the tics from the Tourette.  Despite being an A-plus student, my daughter struggles with intrusive thoughts and had much difficulty adjusting to middle school this year.

Things are gradually improving now that she is on medication and has been receiving much support and accommodations from her school. My daughter “graduated” from the Tourette Syndrome program at Rutgers University after participating for one year in therapy for Exposure/Response Prevention at age 8.  She continues in Cognitive Behavioral Therapy (CBT) today.

My younger son has been exhibiting more tics over the past year, although they seem to be primarily motor tics and are less severe. I don’t believe he would meet the criteria for TS at this point, but surely he manifests some form of tic disorder.  Nonetheless, we are keeping our eyes open.

My son and I were at the Patriots game this past Sunday for Tourette Syndrome Awareness Day and saw the TS ceremonies before the game.  I sought information at the NJCTS table at the stadium during the game, as well as purchased bracelets for both of my children.

I was impressed by the supportive connection I witnessed among the girls on the field after the ceremony. I would love for my daughter to have a chance at that kind of support.  I am looking into participating in Camp Bernie from June 8-10. And I hope that I can both receive and contribute support to other parents of children with TS via this blog.

TS AWARENESS WEEK: Rutgers students learn about clinical side of Tourette

TS AWARENESS DAY: Teen takes pride in Tourette advocacy

TS AWARENESS DAY: Events fete afflicted Tourette kids, families

TS AWARENESS DAY: Tourette Syndrome Day at the Patriots game

In addition, I wanted to thank NJCTS for a wonderful day on Sunday at Tourette Syndrome Awareness Day. They did such an amazing job, from communicating the timing of everything beforehand, to organizing all the groups of kids in fun activities, to speaking and hosting the ceremony — they were pros, and impressive to the point that my husband and family haven’t stopped reminding me that we needed to let them know.

Thank you all at NJCTS for a fabulous day!! We were the last family to leave after the end of the game, and Ethan fought us to stay even then!! On Sunday, we were so proud to be affiliated with NJCTS (not that we aren’t every other day, too!) and you all were a big reason why. Many thanks again for a fun and important day!!