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Fun night brings together Tourette Syndrome families

Last year, my daughter took part in the National Tourette Syndrome Youth Ambassador program. We went to Washington, D.C., were my daughter had the opportunity to spend three days with kids from all over the country who had TS.

She will tell you that they were the best three days of her life. The kids had such a great time together. My shy daughter dropped me like a bad habit 10 minutes after we arrived. It was great to see these kids get the chance to be themselves and know that they would not be judged by the other kids because of their TS.

Over the past year, my kids have talked about how great it would be to get together with local kids with TS. We kept putting it off because it seemed like a lot of work and something always came up. A few months ago, the topic came up and we decided to make it happen. Our kids were very excited about it and their cousin, who was recently diagnosed, wanted to help too. We were all surprised how easy it was to plan. All we needed was pizza, music and kids.

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The night was a great success. The kids made posters and T-shirts. They were all so creative! We had a ton of ice breakers planned, but the kids got along so well they only did a few before they were all comfortable with each other.

The adults had a nice night as well. Marty Butterfield from NJCTS was kind enough to make the trip down and brought lots of great info for the parents. It is so nice to have a conversation with a parent who knows exactly what you are going through. We also shared a lot of laughs.

13241_10151392099681965_1886384737_nAt the end of the night, no one wanted to leave. Every one of the kids said they wanted to do it again. One mother told me that the night was the first time her child had ever admitted that they were diagnosed with TS. That child, as well as all of the other kids, had a smile all night long. For another child, it was the first time he had ever met another kid with TS.

We will definitely do this again! In fact, we will be getting together on a regular basis. As soon as we have a date for our next fun night, we will let you know. We hope to have even more kids at the next one.

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  1. That was so special what you have done for those kids, and put a smile on there faces. I would love to be a part of this organization. I can even use a big smile myself thank you and your family so much for caring.

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