Category Archives: rettland.org

A Body Bound by a Brain #3

Oh, don’t us parents, all of us, just get so excited when our babies pass milestones- the first smile, the first laugh, the first time rolling over, the first step, the first word. The first word. That brilliant first word, … Continue reading

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Communication, cure, Neuren Pharmaceuticals, NNZ-2566 trial, Phone, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , | 1 Comment

…And Slam Dunk Pulls Ahead of the Pack to Win by a Mile!!!

It wasn’t even a photo finish! Neuren’s trial was a double-blind, randomized, placebo controlled study that tested three doses of trofinetide compared with placebo in 82 subjects.  The highest dose of trofinetide achieved statistically significant clinical benefit compared with placebo … Continue reading

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , | 2 Comments

T-?Minutes: Musing 3-Down to the Wire

Well, we’re down to the wire now. This race of results is coming to an end. What a wild ride the last few days have been for the Rett community. Time to stand up and peer down the final stretch. … Continue reading

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , | 2 Comments

Newsworthy News!

Today, like many other Rett parents, I got an e-mail from Neuren in regards to their Chairman’s Address to Stockholders. It was chock full of hopeful expectations. Of particular note: “Finally, I would like to make some remarks in relation … Continue reading

Posted in Ann Romney Center for Neurological Diseases, Brigham and Women's, cure, Neuren Pharmaceuticals, NNZ-2566, Rett Research, Rett Syndrome, rettland.org, TBI, Trofinetide | Tagged , , , , , , , , , , | 1 Comment

Onward and Upward with Little Girl Steps!

From Rettland.org Yesterday Rettsyndrome.org held a webinar with Steve Kaminsky on the important topic of participating in clinical trials. If you missed it here is a link to the audio. We will all move toward a cure faster when we … Continue reading

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