Category Archives: breakthrough therapy

BTD-1…..GO!…..Musing 3

Today, as we reach the 60 day limit from application to hopefully an announcement. I have a simple post. Our wishes have been READY…. . . . . . . . . We’ve been SET for a long time…. . … Continue reading

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BTD-2……..Set…… Musing 2

I am a researching junkie. True. Difficult to believe, I know. đŸ˜‰ I like being “set”. I like knowing what I’m getting in for, whether it’s figuring out my daughter had Rett syndrome before any doctor would say “Your daughter … Continue reading

Posted in breakthrough therapy, cure, FDA, Neuren Pharmaceuticals, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial | Tagged , , , | 2 Comments

Please, Please, Please, Please

One “please” for evey day left. Rett parents say so many “pleases” that never get answered. Please, don’t let that MecP2 test come out positive. Please, don’t let my baby lose her words. Please, let me hear my baby say … Continue reading

Posted in breakthrough therapy, FDA, hope, Neuren Pharmaceuticals, Rett Syndrome | Tagged , , , , | 2 Comments