Category Archives: Ataxia

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

A Rose by Any Other Name…is Still Rett Syndrome

Posted on April 9, 2021 by melelllan

This is something I’ve wanted to get off my chest for sometime, years actually. It’s bothered me at times, hurt me at times, frustrated me often and made me hurt for others so many times I can’t count. It’s the … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | 5 Comments

A Sucker Punch

Posted on October 14, 2020 by melelllan

This is a hard post to write. I got sucker punched yesterday. Without warning, I had to answer one of “those” questionnaires. You know, the ones which go… Can your child do this- (2) for always or often (1) for … Continue reading →

Posted in Acadia, Ataxia, Communication, grief, Neuren Pharmaceuticals, Rett syndrome Awareness, Talking, Trail to a Texas Trial, Trofinetide | 1 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

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

All is Not Quiet on the Trofinetide Front #1 A Chess Game

Posted on January 6, 2019 by melelllan

It’s been very quiet in the public eye in regard to Trofinetide. We all are in a holding pattern as we wait for Phase III to begin, but BEHIND the scenes things are progressing strategically and clearly, like a chess … Continue reading →

Posted in Acadia, anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, breakthrough therapy, Communication, cure, FDA, Fragile X, hope, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Trofinitide, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Rett syndrome Awareness #8

Posted on October 8, 2018 by melelllan

I’m sure people reading this blog are going to go… what happened to the other 7??? Some have been close to posts on this blog so I’ve just posted to Facebook, but I don’t believe I’ve touched upon this particular … Continue reading →

Posted in Acadia, Ataxia, cure, Fragile X, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, Uncategorized | Tagged , , , , , , | Leave a comment