Category Archives: Talking

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 #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

Let’s Break it Down-4

Well! If the last section was a stormy sea of up and down graphs and whirlpools of numbers, I think we’re in for some smoother sailing now! In the last post, three of the five measurements used in this trial … Continue reading

Posted in anxiety in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , | Leave a comment

Conference Post 4-Behavioral Issues…What? Why? and What’s being done.

Dr. Kaufmann’s presentation,”Behavior Issues and Management,” was  a must go to for me. In my previous post, I concentrated on how behavioral issues affect the caregivers and family. Now, I’d like to talk about the key points he made in … Continue reading

Posted in anxiety in Rett syndrome, Communication, Dr. Walter Kaufmann, Education, Rett syndrome conference 2016, Talking, Trail to a Texas Trial | Tagged , , , , , , | 2 Comments

Tick Tock, Hurry up Clock!

Katie’s favorite author, alas, is not me; it’s Dr. Seuss. So, in the spirit of Dr. Seuss…. Tick Tock, hurry up clock. There is a place known as the Land of Rett and in the middle of town, there’s a … Continue reading

Posted in nnz 2566, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , | 4 Comments

Soon, Just a Phone Call Away

How simple a thing a phone call seems. Katie’s sister sends her videos on the phone for her to watch, and Katelin listens when her sister calls, but not once have they had a conversation, except when Katie was one … Continue reading

Posted in Communication, Neuren, nnz 2566, Phone, Rett Syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , | Leave a comment