Category Archives: TBI

Raise Rett Syndrome Awareness

I’ve had my mind on other things, so somehow this escaped me, but today there is an organized push to raise Rett syndrome awareness, through #rettsyndromeawareness While we do devote the entire month of October to Rett Syndrome Awareness, it … Continue reading

Posted in boys with Rett syndrome, chan zuckerberg initiative, Communication, cure, Education, Fragile X, fund-raising for rett syndrome, Intrepid 2566, Neuren Pharmaceuticals, Newron, Rett Research,, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , , , , , | Leave a comment

Epic Fail (Not)

Today was an epic fail on my part. And so I will generalize this day and trials, not just Trofinetide, but just in general. I started out with a GREAT premise…Katie would LOVE a whale watch. We were on one … Continue reading

Posted in cure, Intrepid 2566, Neuren, Neuren Pharmaceuticals, NNZ-2566, TBI, Trail to a Texas Trial, Trofinetide, Uncategorized | Leave a comment

Will it be Luck in Spades?

Neuren has gone in to a trading halt pending (presumably) the results of the Intrepid-2566 TBI study. I can only imagine how the long term stock holders are feeling at this moment….will their hopes be realized? Those dreamed 10 years … Continue reading

Posted in Intrepid 2566, Neuren, Neuren Pharmaceuticals, TBI, Uncategorized | Tagged , , , , | Leave a comment

Three more Colors of Dawn

As Rett syndrome Awareness Month comes to a close, I want to bring to attention two other disorders… Fragile X and Traumatic Brain Injury. What do they have to do with Rett syndrome? … Trofinetide and a chance. In the … Continue reading

Posted in cure, FDA, Fragile X, fund-raising for rett syndrome, hope, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566, Rett Syndrome, TBI, Trofinetide, Uncategorized | Tagged , , , , , , , , | 1 Comment

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,, TBI, Trofinetide | Tagged , , , , , , , , , , | 1 Comment

A Call to Arms!

We have yet another chance to influence the course of Rett syndrome research! Paige Nues, Director of Family Empowerment, sent out an email…In part it says: As the result of meetings just held in Washington DC, many of our elected … Continue reading

Posted in Congress, Intrepid 2566, NNZ-2566, Peer Reviewed Medical Research Program,, TBI | Tagged , , , , , , , , , , , , , , , , , | 2 Comments

A Lucky Shamrock

Borris, another parent, scatters shamrocks for me amongst his posts. It makes me smile and feels like the little sprinkling of fairy dust that made Peter Pan fly, only I don’t fly, but I do cheer up, and sometimes that’s … Continue reading

Posted in Fragile X, Intrepid 2566, Rett Syndrome, TBI | Tagged , , , , , , , , , | Leave a comment