We met with Congressman Frank LoBiondo (R-NJ2) on November 19 with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to discuss TS and the H.R. 3760 federal TS legislation. We are thrilled with how the meeting went!
Below are what my girls, Sarah and Anna, said to the Congressman. Anna went first, then Sarah. My husband talked to the Congressman about difficulties finding doctors that specialize in TS. He also wrote the following on POPVOX, a site that helps constituents get their comments about legislation to their legislators:
Without knowing what causes Tourette we cannot cure it. Right now we have neither a cause or a cure and we need both!
I spoke about some of the difficulties involved with school. My son Eric is looking forward to the next time we do this, as he has decided that he would like to add his two cents also To read more about NJCTS’ visit to Congressman LoBiondo’s office and the impact of his agreeing to co-sponsor H.R. 3760, check this out.
Anna
Hi, as you probably know, my brother, sister and I all have Tourette Syndrome. I’m 14 years old and was diagnosed when I was 12. I currently go to Clearveiw Middle School along with my sister.
Tourette causes me to have tons of tics. Some are arm jerking, muscle clenching, popping my shoulders and hip, blinking my eyes and moving my shoulder blade. Some of these tics hurt pretty bad. I also have a vocal tic where I make a clicking noise followed by a sound I make with my nose.
As of right now, no medicines are manufactured for Tourette Syndrome. Finding a cure would not only help me and my family, but families all over the country! Tons of kids would benefit from it!
Last week, our whole family participated in a study. When we were there, they took a blood sample from each of us. The blood will be tested and compared to try to determine exactly what causes Tourette Syndrome. We need to have more studies like this one. We also need to raise awareness of this disorder. The more people that know about the disorder, the easier it will be for people with TS. Also, more people could be diagnosed sooner and hopefully we’ll find a cure.
Sarah
I’m 12 years old, and I go to Clearview Middle School. I started with an eye-blinking tic at the age of 3. I’ve had other tics that weren’t a problem until recently, when I started with a painful tic where I pull my shoulder forward straining the muscles in my back. Our family is not the only family with this problem, though.
My friend, who I’ve known since third grade, was diagnosed with Tourette Syndrome in fourth grade. I’ve seen kids mock her, imitating the way she jerks her head ant the sounds she makes. My little cousin also started with tics last year. She’s so afraid that kids will make fun of her. Her tics are embarrassing, too. She makes kissing noises, does air quotes and elbows herself in the ribs.
So, as you can see, being a kid is hard, but being a kid with Tourette Syndrome is way harder.
