Category Archives: Uncategorized

A Body Bound by a Brain #3

Oh, don’t us parents, all of us, just get so excited when our babies pass milestones- the first smile, the first laugh, the first time rolling over, the first step, the first word. The first word. That brilliant first word, … Continue reading

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Communication, cure, Neuren Pharmaceuticals, NNZ-2566 trial, Phone, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , | 1 Comment

A Body Bound by a Brain #2

You can feel it, when you’re right there. A quiet rumble at first, but within a blink of an eye, your world is shaking. It’s like time stands still, every second feels like a minute; and then, if you’re lucky, … Continue reading

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 5 Comments

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 , , , , , , , | 2 Comments

This is all the Awareness we can Handle for the Day

http://www.democratandchronicle.com/story/news/2017/10/04/fairport-shooting-two-found-dead-in-fairport/730605001/ And now the Rett community is left with questions? Why? I guess that’s the only one. Why? WHY?

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It’s Bad, but it ain’t ALL Bad

Let’s just put it in the simplest of terms…Rett syndrome sucks. It sucks bad. And,  a lot of the posts I’ll do this month will be about how bad it sucks. But, today, because there is so MUCH horribleness in … Continue reading

Posted in anxiety in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, Uncategorized | Tagged , , , , | 5 Comments

October Siblings

This post, from three years ago, really struck a chord in people. It was the highest viewed post ever. And, the most shared. Rett syndrome Awareness is not just about Rett syndrome, it’s about the families who love them…. One of … Continue reading

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Rett Syndrome, screaming in rett syndrome, Uncategorized | Tagged , , , , | Leave a 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 , , , , , , | 2 Comments