Monthly Archives: November 2016

A Day to be Thankful

On this very day, three years ago, I was given a great gift-Belief-Belief that all was possible; that a treatment, a virtual cure, was possible. And, I have Neuren, Margaret Brimble, and a host of people all over the world to … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Tagged , , , , | 1 Comment

MecP2 x 2 + Dr. Zoghbi = MecP2; The Best Equation since E=MC2

As most people know, there are many mutations of MecP2 that cause Rett syndrome and more than one disorder associated with the MecP2 gene. One of those disorders is MecP2 duplication. Simply put, if you have too little MecP2 protein … Continue reading

Posted in boys with Rett syndrome, chan zuckerberg initiative, huda zoghbi, cure, hope, Huda Zoghbi, MecP2 duplication, Rett Research, Trail to a Texas Trial | Tagged , , , , | 1 Comment

The World Series of Trofinetide

I often equate this process of getting Trofinetide to market to baseball. The teams, the hits, the homers, the errors, the running of the bases-this is a metaphor that I find very appropriate. And now, given the incredible, almost unbelievable … Continue reading

Posted in cure, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , | Leave a comment