My bullying video “Stronger” places in international competition!

Hi! Last week, I shared my YouTube video called “Stronger” about empowering yourself and overcoming bullying. Well, “Stronger” just placed in an international music competition called StarNow Music Immersive, with the final decision coming down later this week, so keep your fingers crossed for me! I’ll let you know how I do!

In the end bullying is about power. Why give anyone that satisfaction over you?

I have Tourette Syndrome, but there is nothing wrong with me

Hi, I’m Jordan, I’m 17 years old and from Paris, Texas. I’m head cheerleader, in marching and concert band, and play golf. I PROUDLY have Tourette Syndrome. 🙂 My whole life I have had symptoms of Tourette and OCD. I was officially diagnosed 3 years ago during my freshmen year of high school — already a stressful enough time, right??

My tics are face, shoulder, arms and finger twitching, which are constant. Vocal tics such as grunting/yelling happen only about 5 to 10 times a day. My OCD often controls my life, and I feel like a prisoner in my own body. Contrary to popular belief, OCD is not just “clean freaks.” Below are the things that set me off into panic attacks (ones with a * are extremely bad):

  • Finger licking*
  • Nail biting*
  • Nail picking
  • Showers that aren’t white
  • I’ve NEVER washed my hands without lotion*
  • Other people’s driving
  • My hair not being perfect
  • Smacking*
  • People pulling at ears/belly button
  • Textures of certain foods*
  • Being alone
  • The smell of other peoples car/home
  • Chlorine/Clorox
  • Being told I’m wrong
  • Chewing on ice*
  • Not having a Butterfinger
  • Air blowing on me*  Continue reading

3rd annual Youth Advocate 5K introduces official timing by CompuScore & new “A-Team”

Are you ready to stand up and walk the walk? Join the “A-Team” – youth advocates for kids with neurological disorders – to promote awareness, acceptance, action and advocacy at a day of fun and empowerment for kids, by kids and about kids.

The 3rd annual Youth Advocate 5K Family Run/Walk, to take place Saturday, November 3, at Borough Park, is being expanded from its previous New Jersey Walks For TS format to an official 5K with timing by CompuScore. Registration is open now, and a reduced rate cost of $22.50 will be available for online registrants through Oct. 31. Registration after Oct. 31 and on the day of the event will be $25.

Joining the “A-Team” at the 5K will serve two very important purposes: supporting children and families with Tourette Syndrome, ADHD, OCD, anxiety disorders, Asperger’s Syndrome and other neurological disorders; and strengthening the statewide education outreach and peer advocacy programs of the New Jersey Center for Tourette Syndrome & Associated Disorders.

This year’s event also will feature a family picnic immediately following the 5K. Participants should bring a lunch and comfortable chairs, and stay for fun, music and entertainment. Check-in on November 3 begins at 8:30 a.m., followed by warm-ups at 9:30 a.m. and the 5K at 10 a.m.

To register for this year’s event, please visit our official New Jersey Walks For TS registration page. To donate or fundraise, please visit our official New Jersey Walks For TS fundraising page. For more information about this event, including our flyer and brochure, please visit our website.

Share your Tourette Syndrome stories on my compilation video

Hey guys! I’m going to be making a video compilation of the stories of people with Tourette Syndrome, and you should get involved! Make a short video describing your tics and how you’ve overcome your struggle, and send it to cassandranikac@gmail.com. Thanks in advance! I’ll post the video here once it’s finished. 🙂

“The Gifted Ones” — a collection of photos of people with Tourette Syndrome

I am creating an album of kids and adults with Tourette Syndrome! Post pics of you or any one you know with Tourette on the Help Spread the Word About Tourette Syndrome Facebook page. This will later be turned into a slideshow!

But I feel like most of you do not know much about me.

My name is Logan Kurtz and I am 17 years old. I am the proud creator of the Help Spread the Word About Tourette Syndrome page. Through out my life with Tourettes Syndrome, challenges were always present in anything I did. Problems always occurred, whether I was ready for them or not.

When I was in middle school, I had a vocal tic that made me cough very loud. I was always sent outside. I did not do as well in the class as I could of because of missing so much of the information while it was being taught. The teacher was very strict and he did not really have any tolerance for disturbances.

I have gone through the name calling stage. My nickname was “TicMan” in middle school. I never pretended that my TS was not there. I just smile back and pretend they were my best friends making a simple and non-harmful joke. It worked. They left me alone. If you don’t react, they don’t have any fun.

Over time I have learned to cope and deal with all these events presented to me. They have taught me much and I want to share my lessons with you and give you the confidence you deserve. At the end of life’s obstacles you are presented with the gift of knowledge and hope.

I will be creating a video soon to further introduce myself to all of you.

My three most painful tics

A friend on YouTube made a video about her three most painful tics and asked others to comment on the video with their three most painful tics. I commented on the video and thought I would blog about it as well! Here are my three most painful tics (3 being least painful and 1 being most painful.

3. Picking/biting/licking my lips. My lips are usually red, swollen and sore from all the picking, biting and licking. This combination of  tics was the very first sign of Tourette Syndrome and started when I was just 3 years old. I have plenty of pictures where you can see my lips are red and raw from the tics. I used to do this tic so much that my lips would bleed.

There have been three times where this tic has been absolutely severe and out of control, although this tic is present year-round, for the most part — just not present to the extreme. The first time it was severe was when it first started when I was 3 years old. I guess it was the most painful at this time because my lips were not used to taking this kind of abuse.

Then in 5th grade and 6th grade it got so bad that I would continually make my lips bleed really badly. I would have to leave class on a regular basis because my lips would start bleeding so badly and it would take at least 15 to 20 minutes to stop the bleeding in the bathroom with a paper towel held to my lips.

The last time it got really bad was when the lip licking got particularly bad, and it was in 11th grade. My lips and the skin around my lips were bright red, and it looked like someone had maybe punched me in the face or someone had painted a red ring around my lips. It got to be really painful after about a week of continual licking, but luckily it only lasted a week or so. Continue reading

Video: Empower yourself and overcome bullying

Hi, I’m 15 and wrote this song about bullying for YouTube because of a personal experience. I did the video myself, too. I was not going to let the people who bullied me break me. Reality is, if it shows that it bothers you, they’ll just do it more. I hope this will help those that are starting to feel torn down to rise up! Don’t let anyone make you a victim. They aren’t worth it.

I hope the song will give other kids the power “to look right over their heads.” Because in the end, bullying is really about power. Why give anyone that satisfaction over you! I didn’t, and I won’t, and I hope more and more kids don’t either.

Vlog: Creativity and fighting for your goals in life

Hi! This is my new vlog! I wanted to show you some creative stuff you can achieve BECAUSE of your Tourette Syndrome and tell you why I think creativity is a talent when you have TS 🙂 Enjoy!

I actually did this vlog in Dutch as well because I think it’s important for young kids to know that TS is not just bad. You can see the Dutch version here.

Tourette Syndrome is looked at differently in the Netherlands

I want to talk to you about what I’ve seen is the difference between how people look at Tourette Syndrome in the United States compared to the Netherlands, where I live.

One of the first things I saw in the way the U.S. refers to Tourette was a phrase about Tourette that had the word “cure” in it. In the 12 years I have had Tourette, I’ve never ever heard the word “cure” (or even the Dutch word for it, which is ‘genezen’), when it comes to Tourette Syndrome.

In the Netherlands, we always talk about treatment (behandelen) or therapy (therapie), never cure! I’ve been thinking about why this is and I really think it’s because no one is even near to finding a cure, so why think about it? I don’t think that far ahead. It’s even slightly frightening to me to think about a cure.

I think about the positive things Tourette has brought me and, yes, I sometimes bitch about the downsides. But since I was 14 years old, I’ve been saying that, even if it was possible, I would never give up my Tourette. It’s a part of me — without it, I’m not me!

I think Tourette has brought me so much, such as compassion, the ability to help others and even a lot of friends! I mean, don’t get me wrong, I absolutely hate it sometimes, but then I get therapy and I try to work through it. And of course there are times when I keep hating it, but how does it help me to think about a cure? Continue reading