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Eureka Teen Becomes Tourette Ambassador

A local teenager will work to displace myths and stereotypes often associated with the misunderstood and misdiagnosed disorder of Tourette Syndrome. Understanding and tolerance are the goals of the D.C.-based training he will receive.

Drew Guise, a 13-year-old from , will participate in the fifth annual Tourette Syndrome (TS) Youth Ambassador Training Program in Washington,  D.C., on April 18 and 19. National Tourette Syndrome Association, Inc. (TSA) representatives will host the training for teens ages 13 to 17, with and without Tourette Syndrome.

"I’m looking forward to being able to learn about the Youth Ambassador program, so I can share more with others about Tourette’s," said Guise. "Others have taught me about hope, and I want to be able to do the same."

Marked by involuntary movements and vocalizations called tics, Tourette Syndrome is an inherited neurological condition that affects more than 200,000 Americans. TS is named for Georges Gilles de la Tourette, a French physician and neurologist who first described this disorder in 1885 in an 86-year-old French noblewoman.

To review a fact sheet about TS from the National Institute of Neurological Disorders and Stroke, click here.

Guise submitted an essay and application regarding his motivation to become a TS Youth Ambassador. He will be accompanied in D.C. by his father, Marty, who also will participate in the training.

After the training, Drew will educate peers and younger children with accurate information by going into Missouri classrooms, schools and clubs to teach understanding, sensitivity and tolerance of TS and its symptoms.

The TSA Youth Ambassador program trains teens to inform and to advocate for themselves and for others. Youth Ambassadors also meet with politicians, appear in the media and assist with fundraising and awareness raising campaigns. Training organizers state that TS Youth Ambassadors receive lasting personal benefits, such as learning to work as team members and developing increased confidence in public speaking.

The newly trained Youth Ambassadors will participate in a “Trip to the Hill” on April 19 during which they will meet with their local elected officials on Capitol Hill, to inform them about how TS affects those living in their communities. Guise has meetings scheduled with the offices of Congressman Todd Akin (R-), Sen. Claire McCaskill and Sen. Roy Blunt.

A Congressional Luncheon Briefing also will take place April 19, during which senators, congressmen and their aides are invited to a luncheon hosted by the TS Youth Ambassadors to hear first-hand about the struggles and issues faced from those living with the disorder.

TSA conducted a Youth Ambassador training for the first time in April 2008. Since the first training, this collective group of 125-plus dedicated teens have completed nearly 500 activities, including presentations, print and TV media interviews, and training other Youth Ambassadors. They have reached more than 5 million people through their combined efforts, according to TSA records.

Program founder Jennifer Zwilling, now 22, said the goal of the program is to educate children all over the country about TS, a widely misunderstood disorder. "We are following the motto ‘think globally, act locally’.”

Drew Guise's story has been selected as a Greatest Person of the Day feature on the Huffington Post website. To find more stories on people named the Greatest Person, go to http://www.huffingtonpost.com/news/greatest-person-of-the-day.

Angela March 29, 2012 at 04:31 PM
The article states: "Tourette Syndrome is an inherited neurological condition..." Vaccines also cause tics. See: Vaccine Research on Thimerosal: Tics and More http://www.latitudes.org/spe/thimerosal001.html CDC Study Links Thimerosal in Vaccines to Motor/Phonic Tics http://www.drugs.com/clinical_trials/cdc-study-links-thimerosal-vaccines-motor-phonic-tics-deficits-attention-behavior-control-verbal-iq-2106.html
Julie Brown Patton March 29, 2012 at 05:00 PM
Thank you, @Angela. All health-related matters often are complex.
Dr. Nick Barnes March 29, 2012 at 05:02 PM
Completely Agree Angie! Thanks for posting!
Kim Koutsogiannis March 29, 2012 at 10:35 PM
I cannot wait till we hear about your amazing story at church! Way to go! I'm super proud!! Kim K. :)
Marty March 30, 2012 at 01:40 PM
I would like to point out that the article is not about the pros and cons of vaccines. The article is about Tourettes. Because you do not know this child's medical history (including any vaccination history), this is what I would term a "soapbox" comment. Can you not let this 13 year old young man enjoy this honor? Should you opt to remain on your soapbox, the best course of action might be to submit an article for the Patch to consider publishing regarding vaccinations.

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