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Review for National Tuberous Sclerosis Association Inc, Silver Spring, MD, USA

Rating: 5 stars  

We have a 19 year old daughter, Marybelle diagnosed with TS at the early age of 2 weeks old due to the ash leaf spot seen on her back. Her doctor was so good that at this early age was cautious and keen in helping her prevent seizure. At 18 month old, she had her 1st seizure and that was the greatest challenge in our life. She was on different medications but only when she was six years old when we found out this organization through her school psychologist. So, we attended the convention in San Diego which educate us and realize more what we have to do and know about TS. Also, we attended the Chicago convention too. We educate and spread to my family and friends what TS means. Then, when the TS clinic in Oakland California opened, my daughter's neurologist recommended us to see this clinic. For 5 years, I supported the TSA walk they do until they stop organizing this event. It was too late for me to join the TSA walk this year but next year I will do it again for my daughter and to those people who are affected with TS. With all these 5 brain surgeries, 3 face laser surgeries, VNS implant and differnt anti-seizure medications we still don't lose hope that someday we will find cure for TS.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?


How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?


Role:  Client Served