My Nonprofit Reviews
Review for National Tuberous Sclerosis Association Inc, Silver Spring, MD, USA
My daughter was diagnosed with Tuberous Sclerosis at age 8 months. Her pediatrician prognosis was grim. If it hadn't been for the Tuberous Sclerosis Alliance I'm not sure that my daughter who is now 19 would be with us today or not at least doing as well as she is doing. The organization has supported us emotional bring us together with other families locally and around the world for support. When my daughter was first diagnosed they could not control her seizures with any conventional medication available in the United States , the TS Alliance provided us contacts and information about treatments that had been very successful in Canada and Europe. We took our daughter to Canada and received the medication Sabril (vigabatrin) she was seizure free her first day. TSA was involved in the lobbying to make this drug available in the US. It is now FDA approved and is the first drug of choice for infantile spasm seizures. My daughter also has brain, kidney, facial and lung tumors TSA funds research in developing new drugs and treatments that are not only helping people with TS but people with autism and LAM. When I donate to TSA , I know I'm impacting lives.
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