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This video captures just over one month in the lives of families fighting Sanfilippo syndrome type B — a rare, terminal childhood disease. In less than 36 days, families and communities across the country raised $4.2 million by Thanksgiving, and met our $5.5 million goal by December 1, to pursue potential early access to a treatment many parents were never told existed. That milestone matters. But it is not the finish line. The process still in front of us — access decisions, timelines, regulato
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Sanfilippo Syndrome is a degenerative terminal genetic disorder, often referred to as childhood Alzheimer’s. Life expectancy is mid to late teens, with no current FDA approved treatment, clinical trials/experimental therapies only. #sanfilipposyndrome #fyp #savingliv #genetics
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