A Message from our Executive Director
In 1976, at age 15, I was the first female in Illinois to be diagnosed with Tourette Syndrome. At that time, there were only two other people in IL who had confirmed diagnoses. Both were teenage boys and both, like I, had brains who were unable to control the movements of their bodies.
I am acutely aware of the “jokes” that surround our disorder. It’s a disabilty that lends itself to cheap shots. I am also acutely aware of the damage that these "jokes" do to children who have Tourettes and those who love them. Bullying was not a topic of discussion when I was a teenager but bullies always existed. I was mocked by classmates and had teachers who imitated my tics in front of the class. Every bus ride was a living nightmare—on more than one occasion there was a group of kids who tried to light my hair on fire while pointing and laughing at my uncontrollable jerks and vocal outbursts. In retrospect, as an adult, I like to think that their actions were borne out of ignorance and fear and I have long forgiven my tormentors. However, on an almost daily basis, I hear from children with Tourettes and their parents who tell me that when it comes to understanding and acceptance -- we are still in the dark ages. The misconceptions abound and the cruel jokes continue.
This is why our organization is so important and we truly hope we can count on your support. The Illinois Tourette Resource Network is a 501c3 organization staffed solely by volunteers. In addition to facilitating monthly support groups throughout the Chicagoland area, ITRN hosts family events, provides awareness training and presents professional workshops on a variety of relevant topics.
Our first fundraiser---“The Movement of Imperfection” is guaranteed to be a wonderful evening of laughter, delicious food, drinks and fun featuring the hysterical comedy act “Shut Up About Your Perfect Kid”. Monies raised will be used to defray the costs of programming and will also help fund our scholarship program, set to launch in 2015. This scholarship program, which is the first-ever Tourette Scholarship fund in IL, will assist our families with disability-related expenses and activities such as medical and therapy fees, camps that provide support to children with specific disabilities, and educational workshop fees.
I survived the tough years. Many others with Tourette Syndrome have also survived -- speaking to the possibility it can be done. However, it is a long, difficult road with limited resources to support our families.
Please consider supporting us so we can increase awareness, decrease bullying and help those who live with TS reach the point where they, too, can say, “Yes, there really is life beyond Tourettes”.
With gratitude and appreciation, Shari
PS--Please take a few moments to watch inspiring messages from two of our many Illinois Tourette Heroes:
Baber Research Group
Computer Training Source
