My Nonprofit Reviews

I am a mom to a daughter who is now 8, but diagnosed with Tuberous Sclerosis when she was only 6 months. Although our doctor knew to diagnose her, he did not know that much about Tuberous Sclerosis. While he searched for someone to help us out, we found The Tuberous Sclerosis Alliance online. It was a gold mine of information. Immediately, we started learning as much as we could from their website. The first thing we did was to find other people with children affected with Tuberous Sclerosis. They were lifesavers for us. We didn't know what to expect or what our lives would be like. But we found a community that was open and honest and there for us in the middle of our darkest nightmare. Then, through the website, we found an amazing specialist. We found out all about the right questions to ask and the right tests to ask for. Now, our daughter is doing quite well and we LOVE our doctor. Several years back, we were able to attend the Tuberous Sclerosis National Conference in Chicago that was put on by the Tuberous Sclerosis Alliance. This was such an amazing time for us. We learned so much about doctors, medications, treatments, and research from the top TS specialists from around the country. And we met some amazing people. I am close to many of the people I met there and online through the TS Alliance. Without the TS Alliance, our home would be a lot different. The TS Alliance taught me about the facts, not the rumors, about what this disease meant for our daughter. And most importantly, the TS Alliance provided us with the one thing we couldn't face this disease without: HOPE.

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