Category Archives: Trail to a Texas Trial

Taking a Break

I would not normally post anything political on this blog, however I am taking a break from this blog for a bit. The current political crisis in my country is demanding my attention. In many ways, Katie’s journey will be … Continue reading

Posted in baseball, bone deformity in Rett syndrome, kyphosis, Neuren Pharmaceuticals, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Tagged , , , | 2 Comments

Pain is in the Eye of the Believer

As I’m writing this Katelin is into her third month with a cavity that needs a root canal. Perhaps, you are saying to yourself, “My God! How could this mother let her child’s teeth go so long without seeing a … Continue reading

Posted in bone deformity in Rett syndrome, Communication, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Syndrome, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , | 4 Comments

Concussions are a Big Pain!

I’m going a little off topic, but this is becoming a pet peeve of mine. I think I’ve done a pretty good job of letting the Rett community know Trofinetide is a real hope- the way it works, why it … Continue reading

Posted in concussion, Intrepid 2566, Neuren Pharmaceuticals, NFL, TBI, Trail to a Texas Trial | Tagged , , , , , , , , , , | Leave a comment

A Backbone of Steel

For 24 years I have taken care of Katelin. I know every mark on her body. I know when a new freckle pops up. I know why she has scars on the tops of her feet, because in severe anxious … Continue reading

Posted in animals, bone deformity in Rett syndrome, kyphosis, Rett Syndrome, Rett syndrome Awareness, rettland.org, service dog, skeleton, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 1 Comment

Trofinetide #3

And on we go! So far I’ve discussed what Trofinetide is, how it came about and what it does. Great, but what are we talking for a timeline, right? Who holds the strings? Just what the heck are the steps … Continue reading

Posted in boys with Rett syndrome, breakthrough therapy, FDA, hope, margaret brimble, Neuren Pharmaceuticals, NNZ-2566, Orpan Drug Status, orphan drug designation, Rett Syndrome, rettland.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , | 17 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

Trofinetide #1

So, we are narrowing in on the start of Phase III of Trofinetide. It’s a word that causes caution, skepticism, hope, giddiness and a myriad of other emotions. Even though I am completely convinced of it’s effectiveness, how it affects … Continue reading

Posted in boys with Rett syndrome, Communication, cure, Fragile X, hope, margaret brimble, Neuren Pharmaceuticals, NNZ-2566, Rett Research, Rett Syndrome, Talking, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , | Leave a comment