Category Archives: Neuren

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

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

A Rock to Stand On.

That’s how I feel about Neuren and its stockholders. They are the rock my Hope is standing on, keeping it above water, and like the mighty mountains, their strength is stupendous. They are marking off miles, no landslides to cause … Continue reading

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Onward, Ho!

As many of you know, Katelin and I are on the road trip of our lives as we relocate from Massachusetts to California, stopping many times to FINALLY meet some of the many families around America. Now, we are in … Continue reading

Posted in Neuren, Neuren Pharmaceuticals, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Leave a comment