Category Archives: hand clasping in Rett syndrome

Hot off the Presses- The Horses are Outta the Gate!

Well yesterday’s post WAS going to be the last one this month but then I got an email from Acadia- “Hot off the Presses” it said and then this announcement- ACADIA Pharmaceuticals Initiates Phase 3 Pivotal Study of Trofinetide in … Continue reading

Posted in Acadia, Dame Margaret Brimble, hand clasping in Rett syndrome, margaret brimble, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial, Trofinetide Phase III, Uncategorized | Leave a comment

Hold the Presses-Trofinetide in the News!

The first publication of the Pediatric Trofinetide trial has hit the proverbial newsstand! Neurology.org has published “Double-blind, randomized, placebo-controlled study of troļ¬netide in pediatric Rett syndrome” ahead of print. So, it’s hotter than “hot off the press.” So, quick cut … Continue reading

Posted in Acadia, anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Intrepid 2566, margaret brimble, Neuren Pharmaceuticals, Neurology.org, NNZ-2566, Orpan Drug Status, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, seizures in Rett syndrome, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , | Leave a comment

To the Doctor that Pissed Me Off

I read this article today titled, To the Nurse Who Made Me Cry and it asks at the end, “Fellow Mighty friends, if you could write a letter to a medical professional, what would you say?” Now, I’ve actually often … Continue reading

Posted in acceptance, Communication, Education, grief, hand clasping in Rett syndrome, hope, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized | Leave a 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

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

T- ?hours:Musing 1- Hands are Clasped

Hand clasping is the signature sign of Rett Syndrome. It prevents most girls from using their hands. Katie is very, very fortunate to have pretty good hand use, incredible hand use if you take Rett syndrome into consideration. This morning … Continue reading

Posted in hand clasping in Rett syndrome, Neuren Pharmaceuticals, Rett Syndrome, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , | Leave a comment