Category Archives: Intrepid 2566

The Short Story and It’s Long Reaching End

 Yesterday, I was contacted by a Neuren Rep wondering if I had heard of the Pediatric Trial with NNZ (Trofinetide) and would I mind promoting it. I had an inward chuckle at that 🙂 and she sent me a blurb, … Continue reading

Posted in Intrepid 2566, NNZ-2566 trial, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , , , , | 1 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 , , , , , , , , | 3 Comments

A New Avenue…

for funding! From Rettsyndrome.org “On June 11, 2015, The Senate Appropriations Committee approved its 2016 fiscal year Defense Appropriations bill to include 50 medical conditions, including Rett syndrome, eligible to compete for funding. This news demonstrates the Committee’s dedication to … Continue reading

Posted in Congress, cure, hope, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566 trial, Peer Reviewed Medical Research Program, rettsyndrome.org, Trofinetide | Tagged , , | Leave a 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, 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