| | | There was a plea today on STAT news from two activist mothers of Duchenne patients. I was able to read it as a free article, but can provide the text if anyone wants it: statnews.com Excerpt:
"As parents, we have each dared to enroll our children in clinical trials whose risk/benefit calculus was still being tabulated, with questions still outstanding. Each of us has had to sign lengthy consent forms acknowledging the risks of infusing our children with experimental gene therapies (one Sarepta’s, the other an earlier candidate) in these trials — risks including liver injury, acute liver failure, and death.
Still, we made the choice to sign, because our children didn’t have extra years, months, or even days to wait for help. When you’re adrift at sea, you don’t ruminate over how the rowboat might sink; you simply climb in."
These were a few of the testimonies of treating physicians in 2023: share.google
Two years later, the physical data is becoming less ambiguous: chatgpt.com |
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