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[quote=Anonymous]I would donate all but $5million to the STXBP1 foundation. My 4 year old son has STXBP1, a genetic disorder that usually happens randomly in utero. DS didn’t inherit it from me or DH. There was recently a study in mice where they used gene editing to completely cure the mice. Like the put a healthy copy of the gene into a virus and put it into the blood stream of the mouse and the virus went into the brain and healed the mouse!! Clinical trials start next year. But in general, these gene therapies are expected to work on kids ages 5 and under. It’s crushing me to think that a cure might come just a few years too late for my son. He has severe epilepsy and developmental delays. It’s such a rare disorder (less than 1000 cases worldwide) that it’s difficult to find companies who want to develop cures, since the opportunity for them to recoup their investment is so small. Maybe half a billion for research could fix that,[/quote]
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