Tag Archives: anxiety

We are Nearing the True Unknown

So, we are closing in on the third and final pivotal trial of Trofinetide. It is my understanding that Neuren and the FDA are meeting in October. Sometime next year the study will begin recruiting and start. What the criteria … Continue reading

Posted in acceptance, boys with Rett syndrome, Communication, cure, FDA, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide, Uncategorized | Tagged , , , , , , | 2 Comments

You scream, I Scream (on the inside)We all just SCREAM!

See this picture here. This is our life, a roller coaster, but our kids are not screaming because they think it’s all fun and games and neither are we. I’ve seen a lot of post lately, from new parents and … Continue reading

Posted in anxiety in Rett syndrome, Communication, Rett Syndrome, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 2 Comments

Though She be but Little, She is Fierce

This is a favorite quote of many Rett syndrome parents. It is often posted. Some have tattoos with it. I’m pretty sure there are T-shirts with it. Shakespeare had no idea what an impact that one little sentence would have … Continue reading

Posted in anxiety in Rett syndrome, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , | 1 Comment