My Nonprofit Reviews
Review for National Tuberous Sclerosis Association Inc, Silver Spring, MD, USA
On January 15, 2008, my husband and I learned that our then two-week-old son was diagnosed with tuberous sclerosis complex (TSC). Among other manifestations, he was born with five tubers in his brain and two in his heart. Needless to say...life would never be the same again...we were devastated! After researching the disorder, we came across the TS Alliance website. For the first time in weeks, we felt some hope. The website was filled with information regarding diagnosis, a list of resources, and support. We were further impressed by the support from the staff...so much so, that we decided to volunteer and join in the mission of the organization. We wanted to ensure every newly-diagnosed family would be aware of all the assistance the TS Alliance provides. Through the TS Alliance, I am able to speak with other families who are going through the same challenges I am going through; I am able to help advocate for my son's education and ensure he has a chance for an independent future.
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