Category Archives: Rett syndrome Awareness

One Moment in Time…

To be honest, I had to wait over a day to try and write this post. And still, I start crying; I ramble; I’ve looked at what I’ve written and while to a special needs’ parent it may look coherent, … Continue reading

Posted in America's Got Talent, boys with Rett syndrome, Communication, hope, Kodi Lee, Music, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Special needs siblings, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 3 Comments

In the Spotlight!- Colleen English

Every once-in-awhile you meet someone just destined to change your world. One of those people is Colleen. In the years that I’ve known her, her great, big heart has gone from figuring out to provide gift cards to trial families … Continue reading

Posted in Anavex 2-73, IgF-1 trial, Neuren Pharmaceuticals, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, Rettland Foundation, rettland.org, sarizotan, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , , | 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

In the Spotlight!- Dame Margaret Brimble

Soon the Phase III Pivotal trial for Trofinetide will begin. I have a personal goal of full recruitment within three months. That doesn’t mean everyone has started, but that all the spots are ready to be filled. WE CAN MAKE … Continue reading

Posted in cure, Dame Margaret Brimble, hope, Neuren Pharmaceuticals, nnz 2566, NNZ-2566 trial, Rett Research, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

International Women’s Day

I’ve had some great female role models over the years and I have a pretty long memory. The first woman I remember, even before my own grandparents, was Grandma Watson, we lived upstairs from her when I was just a … Continue reading

Posted in chan zuckerberg initiative, huda zoghbi, Huda Zoghbi, International Women's Day, margaret brimble, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, RSRT, Trail to a Texas 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

The Next Steps Up the Mountain

Neuren Pharmaceuticals and Acadia have announced more details about the upcoming Phase III trial. Read about them HERE. Two very important blurbs stick out: “The Phase 3 study will be followed by an open label extension study in which all … Continue reading

Posted in Acadia, FDA, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Leave a comment