Tag Archives: boys with Rett syndrome

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