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sfcassie

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1 reviews

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

The TS Alliance has been an invaluable resource for my family. We have a son that was diagnosed with TSC as an infant. This was terrifying and we felt very lost. Thankfully, we were guided to the TS Alliance, which has been an amazing resource for the most up-to-date scientific/medical information regarding TSC and an enormous help with navigating the school system to get our son the support he needs. In addition, the Alliance coordinates an amazing government advocacy program, which has resulted in millions of dollars in government research funding. The Alliance has also itself raised enormous funds for scientific research, already making a huge impact on the trajectory of the disease, and is committed to doing so much more. The staff there is always doing what it can to help families impacted by TSC, and we are hugely grateful!

Role:  Volunteer