Tag Archives: TBI

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

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, rettsyndrome.org, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , , , , , | 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

April Wishes

April is a HUGE month. Not the least of which is the start of the Pediatric Trofinetide trial; but it is also the month the results of Intrepid 2566 are due. For those not familiar with Intrepid 2566, these results … Continue reading

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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 , , , , , , , , | 3 Comments

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, rettsyndrome.org, 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