Category Archives: hand clasping in Rett syndrome

Rett syndrome Awareness Month #2 Sucker Punches

Posted on October 2, 2021 by melelllan

Rettsyndrome.org has a glossary of words and definitions! I must admit that I only recently learned this, so kudos to whomever put this all together. When Katelin was first tentatively diagnosed with Rett syndrome at the age of 18 months … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, Education, grief, hand clasping in Rett syndrome, homeschooling, Human body, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , , , | Leave a comment

October Pandemic

Posted on October 1, 2020 by melelllan

It’s been nearly three months since I’ve put my pen to paper here, on this blog I love. The world is being ravaged by a pandemic and every day is a struggle to get by, to find some normalcy, some … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Death in Rett syndrome, Education, grief, hand clasping in Rett syndrome, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, Trail to a Texas Trial | Tagged , | 1 Comment

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

Posted on October 31, 2019 by melelllan

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!

Posted on March 27, 2019 by melelllan

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

Posted on February 11, 2019 by melelllan

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

Posted on October 10, 2017 by melelllan

  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

Posted on April 1, 2017 by melelllan

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

Posted on March 20, 2017 by melelllan

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