Category Archives: Neuren

Hot off the Presses- The Horses are Outta the Gate!

Well yesterday’s post WAS going to be the last one this month but then I got an email from Acadia- “Hot off the Presses” it said and then this announcement- ACADIA Pharmaceuticals Initiates Phase 3 Pivotal Study of Trofinetide in … Continue reading

Posted in Acadia, Dame Margaret Brimble, hand clasping in Rett syndrome, margaret brimble, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial, Trofinetide Phase III, Uncategorized | Leave a comment

A Day with Acadia- Part 1: Awareness

This is my last post of Rett syndrome Awareness month. I had hoped to do more, but Rett syndrome made sure a good amount of awareness was happening right at home, but this was going to be the last either … Continue reading

Posted in Acadia, Anavex, Anavex 2-73, Communication, Dame Margaret Brimble, fund-raising for rett syndrome, gp2c, hope, ketamine, kyphosis, Neuren, Neuren Pharmaceuticals, Newron, NNZ-2566, NNZ-2566 trial, Remarkable Rett-a podcast series, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, RSRT, sarizotan, service dog, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Leave a comment

A Little Trip, A LOT of Hope!

A few weeks ago, Katelin and I were invited to go to Acadia! On a whim, I googled “Acadia” to see what might popup. First up, beautiful Acadia National Park. Definitely would like to go there! Actually, I can’t believe … Continue reading

Posted in Acadia, cure, FDA, fund-raising for rett syndrome, hope, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , | 3 Comments

Neuren Gets the Green Light!

Well, I was NOT one of the first to get to social media today with the fantabulous news that Neuren has got the go ahead to do a Phase III pivotal trial with Trofinetide. I apologize, it was a day … Continue reading

Posted in cure, FDA, hope, margaret brimble, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , | 4 Comments

Enough for a Baseball Team!

9! 9 sites are active and enrolling participants for the Pediatric Phase II trial of Trofinetide. This got me thinking about baseball (because, really, everything can somehow be related to baseball).¬† I imagine the Rett¬†brain is like the home team. … Continue reading

Posted in baseball, Communication, cure, hope, Neuren, Rett Research, Rett Syndrome, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , | Leave a comment

Heroes and Hugs

Tonight, Katie and I are sitting on the patio of our hotel room, our first Rett conference complete. It will likely take time to process all that we experienced (and devote posts to) but I do know we met a … Continue reading

Posted in cure, hope, Neuren, Neuren Pharmaceuticals, Rett Syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , | 1 Comment

A Rett Syndrome Mother’s Day

As special parents know, holidays are almost always a let down. Christmas usually sucks so bad it borders on travesty. Mother’s Day is a complicated day for us mothers. First of all, you can almost guarantee that whole eat in … Continue reading

Posted in cure, hope, Neuren, Neuren Pharmaceuticals, rettsyndrome.org, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , , , , | 4 Comments