Tourette Syndrome Association of Illinois (TSA-IL)
Tourette Syndrome Association of Illinois (TSA-IL)
800 E Roosevelt Road, Suite 10,  Glen Ellyn, IL 60137
(630) 790-8083  
[email protected]

Like us on Facebook   Follow us on Twitter
Tourette Syndrome Association of Illinois (TSA-IL) Newsletter
June 2012 Edition
In This Issue
Run for the Roses
Message from the President
Ask the Doctor!
Youth Corner - Featuring Matt Bianco
New Website
Quick Links
A Banner Year
for the Run for the Roses!
If you weren't at the 18th Annual Run for the Roses in Roselle on June 3rd, you missed a wonderful 5k race, .6k Youth Run and many other fabulous activities.  Just shy of 1,000 participated in the 5K walk/run! 

It truly is an event for all ages

R4R 2012

R4R 2012

R4R 2012

R4R 2012

R4R 2012

R4R 2012

Once again a HUGE, HUGE Thank you to Mark Mandel and his team for all their hard work year after year.

R4R 2012

Another round of applause for all the Sponsors who support Run for the Roses each year including the 5K sponsor, Sternberg Lighting and the Youth .6k sponsor Wickstrom Chevrolet. 

Thanks to Mark, Sponsors, Donors and participants,  TSA-IL can continue to advocate about Tourette Syndrome and help families throughout the state of Illinois. 

For additional event pictures, see our website!

Mark your calendar for June 2, 2013 for the 19th Annual Run for the Roses!

Photography Talent
Dennis Meserve

I have been very glad to work with the TSA Illinois Board of

Norma Okada
Norma Okada

Directors for the past 10 years.


I have been blessed to work with the Directors to address many TS issues and to help events take place. We learned more about TS together, and continued definite paths in our lives.


After 10 years, I'm ready to pass the Presidency torch. Through consensus of our Board of Directors, I am pleased to announce that Sande Shamash will be the next President of TSA Illinois. 


Sande has worked with our team, the Board of Directors, for several years as the Executive Director of TSA-IL. His experience and expertise have contributed much to the Board's work. The team and I know that this will continue while he is President.


Thanks to the Board and to all of you for fun times. I now look to TSA Illinois' future with Sande's leadership.  I also look forward to remaining on the Board of Directors as we continue to move forward in advocating for TS and helping families throughout Illinois. 


Best regards,

Norma Okada 

Message from the President

As some of you may have heard by now, I have taken a new position as an attorney with Matt Cohen & Associates.  Matt is one of the premier Special Education and Disabilities Rights attorneys in the country and it's truly a dream come true for me to join him in representing our special needs clients.


Although I have stepped down as the Executive Director, it is with great enthusiasm and excitement that I rejoin the Board of Directors and take on my new title as President of TSA-Illinois, Inc. 


Norma Okada has valiantly filled the position since before my arrival at TSAIL seven years ago.  As a mentor and supporter, Norma both initiated me into the organization and let me find my own way as together we moved forward with a shared vision.  She will be missed, but thankfully not far, as she will remain a vital member of our Board. 


Although there have been some title changes, our personnel remains consistent making for a smooth transition as we look ahead to the second half of 2012.  I am very proud to report that our first major fundraising event, the Run For the Roses, organized and run by the amazing Mark Mandel, was a huge success.  We had a record turnout in both the 5k and the children's run, an incredible group of volunteers and a beautiful day.  Mark is a true Torette hero and he continues to out do himself each year.  We anticipate an equally successful TSA Illinois Golf Classic as we celebrate the 16th year of this wonderful event on June 25th.


Please look for our brand new website debuting in the next couple of weeks.  We want your feedback and anticipate it will be a more appealing, informative and user friendly site than previously.  It has been a long process, but we want it to be an exceptional resource for all of you.


As we move forward, we are adding to our TSAIL family with new and dedicated members and volunteers.  Our Board continues to be strong and supportive and we continue to have many new ideas for fundraisers, speakers, support groups and family, adult and children's outings.   Keep letting us know how we can best serve you or better yet, if you are interested in helping.  Together we will continue to rise to the occasion and do all we can to help those affected by TS in Illinois.

Ask the Doctor!
Katie Kompoliti, M.D.
Katie Kompoliti, M.D.
Do you have a question that has been bothering you or wish you remembered to ask the doctor?

Send us your question and it may be answered in an upcoming newsletter. Odds are if you have this question, so do others.

All our questions will be answered by Neurologist, Katie Kompoliti, MD.  Dr. Kompoliti has an extensive background with Tourette Syndrome and tics.  

Send your questions to [email protected]
Youth Corner - Matt Bianco
Matt Bianco
Matt Biacno

Hi my name is Matt Bianco, and I have Tourette Syndrome. I am 14 years old and I love playing the violin.


Playing the violin is one of my best abilities. Without Tourettes Syndrome (TS), I would not be able to play the violin as well!  I was diagnosed with TS when I was about 4 or 5. I have also have ADHD, Anxiety Disorder, and Coprolalia, (the need to swear and say inappropriate things.) 


With TS, I have worries about going places and doing things. I know I should not worry and I try my best to get over it. Also with TS, I have irrational anxiety and I worry and worry about everything almost to the point that I cannot live my life the way I want to.  I know I have to try and live the best life I can, so I tell myself "everything is alright," "God is good." Puberty can be the hardest time for people with Tourette's, and this is true for me. In school I have the need to say the F word and other nasty things, because of coprolalia. It is very hard to control these types of tics and I need a lot of breaks out of the classroom. My classmates are understanding because I have explained TS to them.  Only 10% of people with TS have coprolalia.


I also really, really love The Three Stooges, they keep my mind off my anxiety and stress. I got so obsessed over them that I got a three stooges t-shirt, a three stooges watch, two three stooges posters in my room, three stooges ringtone for my phone, and I am supposed to get a three stooges thing for Easter! Also, I started a three stooges collection of DVDs. So TS can make you obsess about things, but these things I obsess about can help with anxiety and tics (I just need to not get too obsessed).


I do love school very much, but sometimes I need breaks from it because of increasing anxiety and tics. My friends are caring and I am happy that I have been educated about TS so I can explain it to them. I don't mind having Tourette's because it helps me accomplish many things and I have a very interesting imagination.  But sometimes I regret having Tourette's Syndrome because of anxiety, irrational thoughts, and tics.


Because of TS, I have what I call pop-ups in my head. These pop-ups are like pop-ups on a computer screen, but I can't simply close them with a click of a button. These sad irrational thoughts and images pop-up in my mind without warning and they don't go away easily! It is very hard to get rid of them, so I sometimes get really stressed and mad. I also call these pop-ups my mind tics. These mind tics can be depressing, mad, evil, violent, stupid, or anxious thoughts and images that I do not want to have. These are very hard for me to handle and so I have to learn how to live with them with the help and support of my parents.


I sometimes feel bad because kids might think I am weird in school, but I know that there are a lot of people who love me. So every time I get that thought, I think about how much my friends and family love me. Those people who dislike me are missing out on a great friendship.


Music has always been a big part of dealing with TS and I have always loved classical music. I have a really good ear for music and I actually compose my own. Music is the key to helping reduce tics and anxiety.  One of the only times I don't have tics is when I listen to classical music or play my violin. I hope to grow up to be a professional violinist. Without TS, I wouldn't have set my mind so strongly on it or depend on it as much, so Tourette's Syndrome has done a lot of positive things for me.


Do you have Tourette Syndrome?  Have you found a creative outlet? Or do you have any questions for Matt?  Share your story or ask your questions by sending it to [email protected]!


New and Improved Website
Coming Soon New WebsiteBe on the lookout for our new and improved website coming VERY soon!!  

We're very excited about the changes and hope you will be too!  



I think everyone should be told they're beautiful until they believe it - Unknown


You are Beautiful!