Well, this will make Rett syndrome parents’ blood boil-
A blog post about the “failed” Phase II Rett study with NNZ-2566 by someone who cannot grasp the significance of the findings. It’s like someone saying the world is flat and all those round world map believers are wrong because they (the author) can’t comprehend the data.
Here’s the response I wrote-
Let me blunt, this diatribe of nonsense isn’t worth the time you took to write it. Speaking as a parent whose child went through the Phase II Rett trial, I can assure you, that it was in no way a failure. Breakthrough Status is given to only 30% of applications, so it is not surprising that it was not received on the first try, disappointing, though. While TROFINETIDE, (NNZ-2566) is not a cure at the cellular level, and it appears only you find this astonishing, it is a possible “virtual” cure by addressing multiple life threatening and life shortening symptoms, not unlike “Lorenzo’s Oil”.
Neuren and Trofinitide represent the best and ONLY hope right now that children with Rett syndrome and Fragile X may have a chance, how dare you scoff at it. I can personally defend the improvements seen with Trofinitide. Also, Rett doctor after Rett doctor HAVE come out and publically spoken about their support of that trial, Neuren and Trofinitide. In addition, the US Army, which has funded Trofinitide and it’s use in TBI would not continue to fund it if they personally were not seeing positive results. What one sees with their eyes does not always translate well into statistics, but you should be more careful before you wish for the only hope Fragile X and Rett syndrome suffers have to die and fade away, especially when it works.
And, in reference to Darwinism, I think that “survival of the fittest and natural selection” will come into play soon enough, with Neuren on top and you proven so wrong as to become obsolete and made to fade a way.