Spread the Word! Support the Tourette Syndrome bill in Congress NOW!

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Hey guys, as some of you may know, there is currently legislation in Congress that would amend the Public Health Service Act (introduced by New Jersey Congressman Albio Sires) with the goal of establishing regional centers of excellence across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders.

Right now, the bill is in the beginning stages of a piece of legislation’s “life cycle.” Before any bill goes into debate by Congress and the Senate, they first are checked out by several committees. These committees investigate, revise and deliberate them before any further action is taken.

Unfortunately, the vast majority of resolutions and bills that are in this stage never make it out of committee. It is for this reason that we need all the help and support we can get in order to have this bill written into law. I’ve already voiced my opinion and contacted our state representatives. Now you guys have to do the same!

A simple and quick way to make your voice heard is to use the POPVOX system, which automatically allows you to write to your member of Congress in support of this bill. Here are five simple steps to take: Continue reading

You can make a difference! Get involved today!

Here are a few recent links from the New Jersey Center for Tourette Syndrome. NJCTS offers many programs and services to the TS community. Please enjoy these links, sign up for an event or two, and let us know if there are any ways in which we can serve you better!

Tourette Syndrome Awareness Day will be centerpiece of weeklong advocacy campaign

Wednesday Webinar series continues with Feb. 29 presentation on OCD

Children’s book “Emily’s Tic” now available on Amazon.com

Parents have mixed feelings about New York students with mystery illness

Families sing praises about importance, value of annual family retreat weekend

Dare To Dream Student Leadership Conference poster contest — deadline March 1

Educator and Healthcare Provider of the Year Award nominations

Children’s Scholarship Award applications

Eighth annual family retreat weekend at YMCA Camp Bernie — June 8-10

 

The enemy has been defeated: Me 1, Anxiety 0

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.
~ Eleanor Roosevelt

Hello everyone. I haven’t posted for almost a week and a half. Our internet went out because our cable line, the whole line, was dead. So, we have a temporary line and we have it back. So, now I’m able to post on Twitch and Jerk daily once again and I can post on here weekly.

My tics, still, have only happened when I have gotten agitated. The problem with that is when I get agitated, my tics seem to try and make me hurt myself — like pinching, hitting head against something, etc. It has gone on and off. I haven’t been to the doctor in forever. My moms are setting up an appointment.

I have so much to tell my social anxiety therapist. She is so kind, and she has helped me so much. Last night, at Dungeons and Dragons, I did something that I thought I’d never do. Starting a conversation. But, I didn’t just start a conversation. I started three conversations with the same person. Continue reading

Speaking at the Dare to Dream Student Leadership Conference

Hey guys, I am so excited to tell you this! This year, for the third year in a row, I will be a keynote speaker at the Dare To Dream Student Leadership Conference at Rutgers University. For those of you who don’t know what it is, it is a convention for teenagers with disabilities.

There are keynote speakers who talk about what they have been doing and how they have learned to overcome and live with their disabilities, as well as small-group sessions where people talk about different things.

Last year, one of my classmates was a speaker in the small groups and talked about how to write a college resume. Anyways, I am so excited!!! I am going to talk about my Tourette’s, my OCD and the battles I have overcome. I will also talk about my dreams for the future.

I will be going with my old high school, and I can’t wait to see some of my old friends again!! Remember, keep your heads high guys. I know it can get hard, but there is always hope. Whenever a door closes, another one opens!

“Out Of Our Control” Tourette Syndrome documentary is done!

So I finally finished the documentary about Tourette’s and uploaded it to YouTube! I had quite the technology issues and had to export and re-export and upload and reupload each part a number of times. I am just so glad that it’s finally out and ready to be seen by the Tourette’s community! Feel free to share it!

The documentary is in five parts and is pretty darn long, but I figured it was better to make it long than to cut people out. I promised I would e-mail them to the president of our state’s Tourette Syndrome Association chapter, and she already has watched them and said it was awesome! She even wants to show parts of it at a meeting tomorrow if the area we are meeting in has internet capabilities, which I think is very exciting!

So here are the final five parts of the documentary! Enjoy! I’ll be posting more about the whole documentary process soon! Continue reading

Come up with your own Tourette Syndrome slogan!

We’ve all heard the popular Tourette Syndrome community rallying cry, “I’ve got Tourette’s, but Tourette’s doesn’t have me!” One of the many TS entities on Facebook, Help Spread the Word About Tourette Syndrome, has asked its more than 1,100 members to come up with their own slogans, and Teens4TS is joining that worthy bandwagon!

We encourage you to come up with your own saying and post it here as a comment for everyone to read. Teens4TS has received more than 10,000 hits since its inception in November 2011, so there are a lot of people out there looking to read what you have to offer! Who knows, it may be the next big thing used by the national Tourette movement!

How much time ya got? A (long) list of my current tics

So I decided to make a full list of every single tic I have at the moment that I can actually recall and put down on paper, or in this case, the Internet. A rough estimate, I think, is that I probably have more than 50 tics at the moment. My guess is somewhere between 50 and 60.

Let’s see how close I am with that. I figured I just wanted to see how many I actually have right now. I doubt I can even list them all there are probably so many. Thank you, Tourette’s! (That’s sarcasm!)

  1. Eye rolling to upper right corners
  2. Fast blinking
  3. Hard blinking/squinting
  4. Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
  5. Grimace with mouth combined with eye blink
  6. Grimace with mouth without eye blink
  7. Pursing lips silently
  8. Pursing lips to make a slight and quiet kissing sound
  9. Lifting upper lip
  10. Pouting lip Continue reading

What makes me happy? Writing, singing, family, friends

Happiness is not a destination. It is a method of life.
~ Burton Hills

Hello everyone. I had a huge argument with my second mom last night, and we had to have a two-hour talk about what happened so we could resolve things. Everything started getting really bad by February.

I had been feeling unloved,. I had been giving up on myself for school, happiness, and so forth, and I have been extremely depressed and left out. I am slowly getting back into the habit of taking my Zoloft and my Omega-3 gummies, which have been helping me with my moods a little bit.

I am feeling much better about school now that I’m back on pace. Every time me and my second mom have our talks after arguments, I respect her more and more because she shows me that she really is trying hard to be the best second mom she can be.

So because of everything that has been going on, I have decided to tell you a good amount of the things that make me happy so that way I can try and return to normal. Continue reading

“Emily’s Tic” — a new Tourette Syndrome children’s book

Hi everyone! My name is Emily Fleischman and I have published a children’s book called “Emily’s Tic” about Tourette Syndrome.

I was diagnosed with TS when I was 6 years old, and not until two years ago did I begin to talk about my disorder. Once I accepted the fact that I had Tourette Syndrome – I was born this way and this is who I am – I decided that my goal was to educate others about TS.

For the past two years, I have spoken at schools about TS and explained why you should not bully others for their differences. I wrote “Emily’s Tic” to educate young children about TS and show that it is hurtful to bully others.

A paperback copy is available on amazon.com for $9.13 OR if you have a Nook, Kindle, iPad, or iPhone you can download the book for just 99 cents! THAT’S IT — less than a song on iTunes!

Here’s what you do if you have an iPad/iPhone: Download the FREE Kindle app. Then go to amazon.com via that device and purchase Emily’s Tic. It will immediately download to Kindle. On Nook or Kindle devices, simply search “Emily’s Tic” by its authors, Emily and Florence Fleischman

It would be so great it if you could purchase or download the book. Maybe buy one for your favorite elementary school teacher or read it at your local library’s kid’s hour. Please help spread the word!