Tag Archives: cure

Rett syndrome Awareness #8

I’m sure people reading this blog are going to go… what happened to the other 7??? Some have been close to posts on this blog so I’ve just posted to Facebook, but I don’t believe I’ve touched upon this particular … Continue reading

Posted in Acadia, Ataxia, cure, Fragile X, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, Uncategorized | Tagged , , , , , , | Leave a comment

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

And Tomorrow it Begins

Tomorrow starts Rett Syndrome Awareness Month. Needless to say, all around the world parents, researchers, doctors, aides (the lovely ones, like Curry), siblings, grandparents and loved ones are going to bombard their Facebook pages with statistics, symptoms, pictures of purple … Continue reading

Posted in cure, Dr. Walter Kaufmann, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, NNZ-2566 trial, Rett Research, Rett Syndrome, Rett syndrome conference 2016, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 2 Comments

And the Horizon is That Much Closer!

I’m posting a bit behind the times, this news is already making its rounds about Facebook, but I would be remiss not to give it a shout out. Two days ago, the Chan Zuckerberg Initiative pledged to invest $3 BILLION to cure … Continue reading

Posted in chan zuckerberg initiative, cure, Huda Zoghbi, Uncategorized | Tagged , , , , , | Leave a comment

Full Speed Ahead

If I had tried, I could not have wished for a greater surprise in my inbox after a day of errands, a haircut for Katie (and a donation for Locks of Love all ready to go) and watching my girl … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, Rett Research, Trofinetide Pediatric trial | Tagged , , , , , | Leave a comment