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

Rating: 5 stars  

My six year-old son was tentatively diagnosed with TSC in utero on what turned out to be the last day of my pregnancy, when a large tumor was found in his heart. To say that my world came crashing down is an understatement. My husband and I spent some time researching the disorder on the internet, and it soon became clear that the Tuberous Sclerosis Alliance was the only resource for clear, accurate and comprehensive information, from fact sheets to research articles to lists of TSC clinics to links to community support. I contacted the chair of my local chapter and within a few months had met several families in my area living with TSC, many of whom have since become a second family to me. In 2010, our local chair stepped down and I was given the honor of filling her role. The support that the TS Alliance is able to provide our community - from fundraising walks, online support groups, sibling support, government advocacy, research teleconferences and educational meetings - and all on a shoestring budget - is nothing short of astounding. Recently I was able to observe a board meeting, and I was truly impressed by the complete sincerity and utter commitment of its member to fulfilling the mission of the TS Alliance: finding a cure for tuberous sclerosis complex while improving the lives of those affected. In my opinion, the TS Alliance is the very model of what a rare disease organization ought to be.

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Role:  Volunteer