Category Archives: hope

Neuren Gets the Green Light!

Well, I was NOT one of the first to get to social media today with the fantabulous news that Neuren has got the go ahead to do a Phase III pivotal trial with Trofinetide. I apologize, it was a day … Continue reading

Posted in cure, FDA, hope, margaret brimble, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , | 4 Comments

A Body Bound by a Brain #1

  When people see a young child with Rett syndrome, parents often get “they look normal.” It’s almost like a question, as if questioning the parent that they’re child is actually disabled. It’s a weird sensation in that moment-there’s nothing … Continue reading

Posted in Communication, cure, fund-raising for rett syndrome, hand clasping in Rett syndrome, hope, Rett Research, Rett Syndrome, Rett syndrome Awareness, Talking, Trail to a Texas Trial | Tagged , , , , , | 1 Comment

We are Nearing the True Unknown

So, we are closing in on the third and final pivotal trial of Trofinetide. It is my understanding that Neuren and the FDA are meeting in October. Sometime next year the study will begin recruiting and start. What the criteria … Continue reading

Posted in acceptance, boys with Rett syndrome, Communication, cure, FDA, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide, Uncategorized | Tagged , , , , , , | 3 Comments

Following the Yellow Brick Road!

I have been quiet of late, a lot go on in the Rettland we inhabit. A bunch of common stuff for Rett syndrome came up, doctor appts and training Katelin’s service pup, Flynn, has taken up a LOT of my … Continue reading

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

Poetry Month: Strength Inspired

I thought a lot about what should be the last poem I posted for Poetry Month. Should I go with hope? accepting your lot in life? the poem about the little girl who still counts her dead siblings as alive … Continue reading

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

Let’s Break it Down-5 (Neuren Aims, Shoots, Scores! Slam Dunk!)

  Yes, we have finally reached the last part of the Pediatric Trial Results. Hooray. It was quite a challenge for me and hopefully I madeĀ it understandable for everyone. I want to thank those people who explained things to me … Continue reading

Posted in cure, hope, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , | 2 Comments

T-?Hours: Musing 2-The Stuff of Dreams

So, the results didn’t come out today. Bummer, that. Well, then, it’s just another sleep and a wakeup give or take. So we all get to sleep on it. I’m not worried about tomorrow; I’m certain that, no matter what … Continue reading

Posted in boys with Rett syndrome, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , | 1 Comment