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“I finally felt that I was not alone.”

Dear Friends,

Hi! My name is Sofia. I am 13 years old, and I am a student at Readington Middle School. I love to compete in NGA gymnastics, and I am a level 7 this year. I also love to create art, listen to music, sing, and decorate. Lastly, I enjoy baking.

I was diagnosed with Tourette Syndrome at age 6. After my diagnosis became clear, I felt relieved because I finally knew what was happening to my body. The diagnosis gave me answers as to why my body moved and made sounds involuntarily. I could finally begin to explain why these things were happening to me. NJCTS helped my mom find the doctor who diagnosed me. She was so happy to find NJCTS on the internet, and the organization helped us find a good neurologist and therapist to help me manage my TS.

I decided that I wanted to learn even more about Tourette Syndrome so I attended an NJCTS youth advocate event. At the event, my parents and I were able to meet people that shared similar experiences. I was so excited to meet other kids who had Tourette Syndrome-I finally felt like I was not alone. At the event, many of the kids gave speeches, and I heard their personal experiences. I was inspired by these youth advocates, and I realized that I could share my story too. After the event, I gave a speech to my 4th grade class. It was a little scary at first, but by the end of my speech I felt proud because I was able to share my diagnosis. After the speech, 20 other students and several teachers knew what it meant to live with Tourette Syndrome. I even shared ways that they could help me and others that live with TS.

After this event, I really wanted to give back to NJCTS while spreading awareness about this neurological disorder. I decided to participate in the NJ Walks for TS event. I invited all my friends, gymnastics team members, teachers and family members to join me at a local park. All of these people donated money to my event to show support. At the event, I gave my speech to an even larger crowd. It was empowering to realize that I was sharing my message to so many people. The event was important to me because fundraisers can help other families that are living with TS learn more and NJCTS can use the money towards research, education, and advocacy.

The events that NJCTS sponsors can help other families like mine. For example, I attended the Family Retreat Weekend at Camp Bernie. At the camp, I got to meet other kids with Tourette while having fun. There was rock climbing, crate stacking, arts and crafts, archery and swimming. My parents participated in panel discussions led by doctors and experts in the field. They were able to connect with many families at the event. This past summer, it was fun to participate in the online Camp FantasTIC where we were sent arts and crafts by mail, had conversations about TS, and even watched a comedian that has TS which was inspiring. The greatest benefit that I have received from NJCTS is that I was able to meet other people like me, and talk with them. I have learned to advocate for myself on a daily basis.

I am so thankful to NJCTS! If you are too, please consider making a donation to help more families like mine!

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