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Participate in Tourette Awareness Month

Challenges faced as a result of the condition can be physically and psychologically crippling. Let’s make a difference together this Tourette Syndrome Awareness Month, May 15 – June 15, as we create a more universal understanding of the condition, as well as to share successes to inspire our community and beyond. There are various ways you can get involved and make a lasting difference on a global scale.

Get Social:

There are various ways to leverage social media to join the TAA’s efforts in maximizing Tourette Syndrome and Tic Disorder awareness.

Attend a Virtual Event:

  • 2021 Virtual Conference May 14 – 16, 2021 – Information is being presented through variety of web-based sessions geared towards adults, parents, teens, educators and medical professionals in the TS community.
  • Miles for Tourette May 15 – June 15, 2021 – Virtually walk, run and cycle to raise funds and awareness for TS.
  • Teal Tuesdays May 18, May 25, June 1, June 8, June 15 – Wear teal on Tuesdays to support Tourette! Ideas include: teal clothing, ties, bracelets, buttons, hair accessories, nail polish and more! Get creative and Post pictures on Social Media!
  • Local Chapters and Support Groups are hosting fun, informative and engaging virtual programs.

Contact your Congressional Leader:

Your voice makes a difference. Contact to your Congressional leaders in a pre-populated virtual letter to advocate for the most pressing public policy issues that face the Tourette Syndrome community. #Rally4Tourette

Make a Gift:

The TAA has been around for almost 50 years thanks to generous donors and supporters alike. Every gift makes a difference, no matter how big or small. Your donation supports our efforts to increase awareness, treatment options and care, and support resources nationally.

Assets for Awareness:

As a community that is often misunderstood, raising awareness through storytelling is one of the most compelling ways to increase knowledge and tolerance of the condition.  Please feel free to share these stories on your social media pages during Awareness Month and encourage your networks to do so too. Customize the messages to fit your story and share a photo of your family to spread awareness about TS!

International Awareness

Special thanks to AIST Onlus Italian Association for Tourette Syndrome for the shared use of this creative as a means to raise TS awareness globally.

Davide's Story

“My name is Davide, and I’ll be 18 years old in October. As a little kid, I was lively and cheerful. In kindergarten, the teacher told my mother that I was hyperactive. At age 4, my tics first started appearing. My parents thought that I was joking at first because I would jump and cough all the time. However, my mom noticed that the cough wasn’t related to a cold or the flu, and my eyes were involuntarily moving all around. Although I loved making everyone laugh because I was a funny kid, everything started to change. I was no longer that lively, cheerful, funny, happy kid because my tics started to intensify.

I started saying vulgar words and making upsetting gestures out of nowhere. It was at this point that my parents really started to worry about me, and after visiting many psychologists, they could never identify what was happening. For me, I was still a little kid and didn’t fully understand what was going on or even how bad my gestures were. I didn’t feel any different from other kids until some tics started making me feel like a social outcast.

People on the street would look at me strangely and judge me. My friends would ask a lot of questions, but I couldn’t answer them. I didn’t formally get diagnosed until I was 10 years old, and it changed my life completely. With the awareness of having Tourette Syndrome, it started to ease the internal suffering. Still, I was very tired mentally and physically, and the therapy was very grueling.

It remains difficult for me to explain how I feel after taking those psychotropic drugs for years; because of them I was feeling better in a certain way, but at the same time I was exhausted. I am grateful for the support of my family. They told me that I was fantastic even with all of my funny screams or my flaws, because they noticed how sensitive I was about this subject. A few months ago, I agreed to make this video to show my true self, which involves my tics and how I feel when people don’t understand me.

I’d like other people to stop passing judgement. My wish is that my peers, my teachers, and others know how common my situation is and that their words and actions can affect my feelings.”

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davide2

Behind the Scenes with AIST

Helping the video come to life was Watermelon Film and Animation. This award winning studio specialized in creating connecting and engaging contents, helping brands and agencies to maximize the results with the most cost-effective approach. 

 

Shareable Story 1:

“Just because you can’t see it, doesn’t mean it isn’t there.”
If I could count the times I have said this, you would be astonished. Let me tell you a story of how this goes…

Right after the Tourette Syndrome diagnosis, we met with school officials to discuss accommodations and I left that meeting frustrated and in tears.

They didn’t “believe” in his diagnosis because he didn’t portray TS symptoms that they were “used to.” By “used to,” they meant what they saw in the media. What they heard as a punch line of a joke. What they heard as an insult.

For those who are diagnosed, Tourette Syndrome is everyday life. It’s non-stop tics, physically and mentally, the medication, and doctor appointments. It’s comorbid conditions, therapists, and sometimes even tears.

Unfortunately, this isn’t something unique to just us. I’ve heard dozens of people share similar situations of what happened to them.

So I am here to tell you-
Tourette Syndrome is not what the media portrays.
Tourette Syndrome can be painful.
Tourette Syndrome is emotional, frustrating, and isolating.

It is not a punchline.
It is not a joke.
It is not a slur.

But more than all of that, Tourette Syndrome is determination and bravery. It’s strength, pride, and perseverance that those diagnosed with TS show every single day. To us, Tourette Syndrome is a superpower. 💙💙💙

#TouretteAwareness #TouretteAwarenessMonth #Tourette #TouretteSyndrome #TouretteCommunity

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Shareable Story 2:

We’ve all heard it all before…
The punchline from the comedian.
The quip from the politician.
The excuse for someone’s bad behavior.
The slur of an insult.
But what people fail to understand is that they aren’t funny.
The media portrays Tourette Syndrome as a joke; it’s anything but.

Tourette Syndrome can be physically painful, emotionally draining, and even more so- isolating.

It comes with a suitcase of unwanted articles including ADHD, depression, and OCD; making daily living anything but simple.

But do you want to know a secret of what it really is?

It’s the determination from the 7-year-old to focus on an assignment at school even though his hand won’t stop ticcing.

It’s the bravery of the 16-year-old with a shoulder-shrugging tic who’s taking her driving test for the first time.

It’s the strength of a mother who is confused and scared as her child has just been diagnosed.

It’s the candor of a 45-year-old who has just been overlooked for his dream job, or worse – recently let go, because of TS.

But above all-it’s the perseverance of every child, teen, and adult who lives with TS on a daily basis.

So the next time Tourette Syndrome is used as a punchline, a quip, or a slur, please don’t laugh. Don’t share it. But instead, remember that there are real people behind the joke who may set them back. 💙💙💙

#TouretteAwareness #TouretteAwarenessMonth #Tourette #TouretteSyndrome #TouretteCommunity

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Shareable Story 3:

The question I always get asked is “how do you do it?”
How do you handle the outbursts, rage, and defiance?
How do you handle the other parents, teachers, friends, and family who don’t understand or believe you?
How do you stay sane?

The truth is the Tourette Syndrome is complex and can take you to the darkest depths. It touches the whole family, diagnosed or not. The only way to keep my family sane and on a positive path was carving out time for ME. I needed, craved, activities and interests other than just TS. Because let me tell you, it can consume your life.

I found a part-time job with flexible hours which gave me a sense of doing something worthwhile. I also started a flower garden which provided me with a sense of ‘control.’ Because of the extra income from my job, I was able to afford a therapist. Not a therapist for my son, but for ME.

It was the time I spent on ME that allowed me to raise my children in a safe and loving way. Don’t get me wrong, I still too often responded in ways that did not warrant a ‘mother of the year’ award. But as parents we need to remember what we are doing is difficult and we are all doing the best we can at any given moment.
Above all else, try hard not to beat yourself up. Doing that doesn’t help anyone. If you can’t find a therapist, then connect with a friend who will listen in a manner that is caring and nonjudgmental.

As my good friend told me many, many times…Take Care of You. 💙💙💙

#TouretteAwareness #TouretteAwarenessMonth #Tourette #TouretteSyndrome #TouretteCommunity

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