Category Archives: acceptance

To the Doctor that Pissed Me Off

I read this article today titled, To the Nurse Who Made Me Cry and it asks at the end, “Fellow Mighty friends, if you could write a letter to a medical professional, what would you say?” Now, I’ve actually often … Continue reading

Posted in acceptance, Communication, Education, grief, hand clasping in Rett syndrome, hope, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized | Leave a comment

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 , , , , , , | 3 Comments

April is Poetry Month-Katelin Inspired

One of the first “poems” I wrote that was inspired by Katie was actually turned into a book! “Tyler and the Spider” is a story of acceptance, no matter the differences. It’s meant to show that being nervous and afraid … Continue reading

Posted in acceptance, poetry month, Rett Syndrome, Uncategorized | Tagged , , , , , , | 3 Comments