Tag Archives: boys with Rett syndrome

A Little Trip, A LOT of Hope!

A few weeks ago, Katelin and I were invited to go to Acadia! On a whim, I googled “Acadia” to see what might popup. First up, beautiful Acadia National Park. Definitely would like to go there! Actually, I can’t believe … Continue reading

Posted in Acadia, cure, FDA, fund-raising for rett syndrome, hope, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , | 3 Comments

Trofinetide #2

So, here we go- Why was Rett syndrome chosen for Trofinetide trials. Contrary to what most people think, Trofinetide was not developed for Rett syndrome. A quick google search reveals that it was first developed for stroke, but the focus … Continue reading

Posted in boys with Rett syndrome, cure, Fragile X, hope, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566, Rett syndrome Awareness, TBI, Trail to a Texas Trial | Tagged , , , , , , | Leave a comment

Here’s to a New Year and a New Hope

This will be my last post of the year!   I’m feeling particularly retrospective at this time, this year. Facebook has reminded me on an almost daily basis since November of Katelin’s participation in the Adult trial (Phase II of … Continue reading

Posted in boys with Rett syndrome, Communication, cure, FDA, hope, MecP2 duplication, Neuren Pharmaceuticals, NNZ-2566 trial, Rett Research, Rett Syndrome, rettsyndrome.org, Talking, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III | Tagged , , , , , , , , , , | 2 Comments

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

T-? Crunching the Numbers

  There are 31 days in March. That means at noon today, we entered the second half. Which, in turn, means there are less than 15 days until we will know the results of the Trofinetide Pediatric Trial. 360 hours. … Continue reading

Posted in boys with Rett syndrome, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , , , | Leave a comment

Too Much of a Good Thing…Makes me Way Behind!

SO much is going on in the world of Rett syndrome, that I have fallen woefully behind in keeping up. To my defense a lot has been going on in my little world that needed attention, BUT as a State … Continue reading

Posted in boys with Rett syndrome, MecP2 duplication, Rett Research, Rett Syndrome, Rett syndrome Conference 2018, rettsyndrome.org, Trail to a Texas Trial | Tagged , , , , , , | Leave a comment

A One in a Million Boy

  Rett syndrome affects 1:10,000-15,000 females. You hear all kinds of statistics about girls; almost all literature has only the pronouns “she” and “her”.  Even doctors will talk in terms of only girls. Trials are only compiled of girls. But, … Continue reading

Posted in boys with Rett syndrome, Klinefelter's syndrome, Rett Syndrome, Rett syndrome conference 2016, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 6 Comments