| University Milwaukee Wisconsin Genetic Research Study |
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 Dr. Hanjoo Lee from the Psychology Clinic at the University of Wisconsin-Milwaukee (2441 E Hartford Ave. Milwaukee, WI53211) is recruiting children /adolescents aged between 9 and 17, who experience moderate to severe tic symptoms, for a treatment study.
This study examines whether a computer-based cognitive training program can improve the effects of behavior therapy for Tourette Syndrome/tic disorders. Participants will receive 8 computer-based cognitive training sessions in addition to 8 weekly behavior therapy sessions, with clinical evaluation before, during, and after the treatment. Interested individuals/families are encouraged to contact Dr. Hanjoo Lee, by email ( [email protected] ) or call him at 414-229-5858. Research Study at University of Wisconsin. |
Additional Genetic Studies
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Worldwide Research Study Available for Children and Adolescents Living with Tourette's Rush University Medical Center in Chicago, is partnering with Inclinix, Inc., a Wilmington, NC-based clinical trial enrollment solutions provider specializing in Global patient enrollment for pharmaceutical research studies to recruit children and adolescents diagnosed with Tourette's for AWARE, a new worldwide clinical research program. See our website for more information  THIS IS YOUR CHANCE TO MAKE A DIFFERENCE!!! The Tourette Syndrome Association International Consortium for Genetics (TSAICG) in collaboration with the National Institute of Neurological Diseases and Stroke (NINDS) and Tourette Syndrome Association (TSA) The TSAICG has identified several chromosomes that may contain genes for TS. The TSAICG is collaborating with the National Institute of Neurological Diseases and Stroke (NINDS) and the TSA to continue our genetics studies and confirm these findings. But in order to do so, WE NEED TO ENROLL 3,000 PEOPLE WHO HAVE TS. Visit our website for additional information  Tourette Syndrome Genetic Study at John Hopkins University Needs Participants!
ABOUT THE STUDY - This multi-site study will find the genes that are important in the development of Tourette Syndrome
- Locating genes will give us an understanding of the biology of TS and make individualized treatments possible.
- This research is funded by the NIH through the Tourette Syndrome Association and involves six participating university centers.
Visit our website to see how you can help |
EVENTS OF INTEREST
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Sept 19 7:00 - 9:00 p.m.
Sande Shamash "Strategies for Getting Appropriate School Services for Children with Tourettes Syndrome" LOCATION Matt Cohen & Associates offices 155 N. Michigan Ave. 7th floor conference room Chicago, IL 60601
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Greetings!
TSA-IL is excited about the Tourette Connection group getting back in gear with a Community Group meeting tonight in Deerfield - hope you can join us. We are also looking for volunteers to help us plan some wonderful events for the remainder of the year. If you have a few hours of free time, please send an email to [email protected]. Enjoy the upcoming crisp days of fall! Best regards,
Tourette Syndrome Association of Illinois |
 | Tourette Connection Meeting
Tuesday, September 11th @ 7:00 pm
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B'nai Jehoshua Beth Elohim (BJBE) 1201 Lake Cook Road (area map)Deerfield, IL 60015 The Tourette Connection Community Group will resume their meetings starting tonight, Tuesday, September 11th from 7:00 pm - 8:45 pm.
Please note the day change from Wednesday to Tuesday.
The Tourette Connection Group will meet on the 2nd Tuesday of the month from September until May 2013. Mark your calendars, you don't want to miss this great opportunity to share and learn from others on the TS Journey! - September 11th
- October 9th
- November 13th
- December 11th
- January 8th
- February 12th
- March 12th
- April 9th
- May 14th
Children and adults are welcome! Some meetings have supervised children's activities, please check with a group leader below. While we want and encourage families to attend, please know parents are always ultimately responsible for their children. Please RSVP to Tourette Connection Leaders - Shari Meserve is an adult with TS and parent of adult children with TS. She is a school psychologist who works as an educational consultant and advocate for a special education law firm. She can be reached at 847-800-8781 or by email at [email protected]
- Jen Johnson is the mother of four boys, two of whom have TS. She is a former high school educator and current Vice President of Tourette Syndrome Association of Illinois. Jen can be reached at 847-302-7274 or by email at [email protected]
Please NOTE: Tourette Connection will no longer be using e-mail to communicate with its members. Please go to http://www.meetup.com/Tourette-Connection and sign up today! For additional information about Community Groups, please visit our website. Hope to see you tonight! |
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Ask the Doctor!
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Katie Kompoliti, M.D.
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Are there any good studies demonstrating the benefits of guanfacine in TS, and also, do we know the mechanism of action for this drug in TS?
Two classes of drugs are most widely used to control tics associated with Tourette's syndrome: α2 adrenergic agonists promoting the action of Norepinephrine (Tenex� and Clonidine�) and Dopamine blockers (Orap�, Risperdal�, Abilify�, Geodon� e-t-c). Intuniv� is just long acting Tenex�.
Tenex� and Clonidine� were originally developed as blood pressure medications for adults. Use of these drugs for tics is supported by results of well designed clinical trials although these results are not uniform. Although they are generally not as potent as the Dopamine blockers in suppression of tics, Tenex� and Clonidine� are more benign than Dopamine blockers in terms of potential short-term and long-term side-effects and are frequently the first choice in previously untreated individuals, especially those with mild-to-moderate tic symptoms. Furthermore, they can have a favorable effect on ADHD and behavior. READ MORE...
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 - Youth Ambassador Patrick Resh
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 | | Youth Ambassador Patrick Resh |
September always feels like a new year to me. There are so many transitions from the carefree days of summer to the structure of school.
That is not to say my summer was not full! I left the first week of June to be a camp counselor in Central Wisconsin. Over 8 weeks of summer camp, I taught merit badges to Boys Scouts who ranged in age 11-17. The Merit Badge covered nature topics. The subject is interesting to me and it never felt like work. The days were long but I was among a great group of kids and counselors.
Two days after arriving home, I left for another adventure in New Mexico. For 2 weeks I backpacked in the mountains. Our crew carried gear, navigated our route, and participated in some great programs like pistol shooting, horseback riding, and rock climbing. There was little rest and the hikes and elevations were challenging. Our crew needed to work together and share responsibilities. As a crew leader, there were times I felt overwhelmed but in the end, I felt I had overcome some difficult obstacles.
Summer was filled with great experiences. I learned I had to plan my trip and carry the necessities. I learned I had a team with me and I did not have to do everything myself. It was often tough, but also rewarding when the goals were achieved.
On the first day of school, I was a bit overwhelmed. Each teacher introduced his and her expectations for the year. I felt the pressures start to cloud over me and it took a few days and some deep breaths to remember my lessons from the summer.
- I need to plan my course. If I have a plan, I should be able to know where I am and how to get to where I am going.
- I need to prioritize and organize.
- I remind myself I have a team which will make the trip a bit easier and I am not on this journey alone.
- I know it will be tough going but I know the view is great from the top!
Have a great school year!
Do you have Tourette Syndrome? Would YOU like to be a Featured Youth? Share your story by sending it to [email protected]!
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| US Department of Education Resources
|  With school back in full swing, the following links are to the US Department of Education Q&A regarding topics you might find helpful.
Thank you Kathy Giodano for keeping us current in Education Resources! |
| Want to go to a Bulls Game with
TSA-IL?
|  Our Annual Fun in the Sun was so much fun, we need some more events! We are trying to gauge if there would be enough interest in attending a Bulls game.
To keep it as economical as possible, we are looking to attend the Tuesday, October 23rd Pre-season game against Oklahoma City @ 7:00 pm. Ticket cost would be $22 per ticket. To see what a great price this is, the same seats would cost $60 to see the Bulls play Oklahoma City on Thursday, Nov. 8th!
Please RSVP to [email protected] by September 20th if you would be interested in purchasing a ticket(s) for $22 for the October 23rd Bulls v. Oklahoma City pre-season game. Also be sure to indicate the number of tickets you would want. We need to purchase a minimum of 20 tickets to receive the $22 group pricing. There is no commitment at this time! If there is enough interest, another e-mail will go out with ticket purchase information. |
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