Category Archives: Uncategorized

Faith in humanity

This gallery contains 4 photos.

Originally posted on blueberriesandgiggles:
This morning Lily, Urzsula (one of her beloved caregivers) and I met our cousins the Darlings at the Children’s Museum. We had a blast, especially at the dance party! Everyone at the museum was super accommodating…

Gallery | Leave a comment

The Inner Workings of a Star

I have known Katelin from long before she was born. Through ultrasound, I saw her when she was just a little bean and later, when she looked more like the little girl I would soon hold in my arms, I … Continue reading

Posted in Big Bang, Dr. Robert Chesanow, kyphosis, Radiology in Rett syndrome, Uncategorized | 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,, 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,, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , | 17 Comments

Thank you, Neuren

Dear Neuren researchers, administrative personnel and stock holders and everyone involved in the journey we’ve been on for four+ years now. This post is just for you. Today, my Christmas present was watching Katelin’s joy at holding her very own … Continue reading

Posted in Neuren Pharmaceuticals, Uncategorized | Tagged | Leave a comment

Christmas Wonderland

Every year for the past 18 years I’ve asked Santa for a cure for Rett syndrome. (Katie was 6 when the gene testing became available and we knew with absolute certainty she had Rett syndrome). Every year except this year. … Continue reading

Posted in Communication, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , | 1 Comment

What do Halloween and Rett syndrome have in Common? Superheroes.

Today is the last day of October. Another year gone by from one Awareness Month to the next and still no treatment. But this is not a humdrum post BECAUSE treatment is now within sight. Each year in October superhero … Continue reading

Posted in Anavex, Anavex 2-73, boys with Rett syndrome, cure, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, sarizotan, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , | Leave a comment