As most who read this blog know, October is Rett Syndrome Awareness month. But this month has seen its share of awareness, too. I was honored to give a presentation on Rett Syndrome and our NNZ trial experience to three statistics classes at Katelin’s school, Barnstable High. One of the teachers donated for her trip to Texas and I was happy to do this for her. The presentation was well attended and the students asked great questions, were sweetly upset Katelin was not getting it now that the trial was over, and were interested throughout. Well, I didn’t see anyone fall asleep, anyway. The Barnstable Patriot did a wonderful job and you can read the write up here.
However, the ultimate awareness, to me, was this by my grandchildren…
Josiah said today at dinner about their (Ely, Callan and Surrey) nails:
“It’s because Aunt Katie has a sickness that has a purple ribbon. This why their nails are purple. So it will help her.”
PS. Can I put in that Trofinetide has a purple label at least or packaging, or letters. Something. That would be so cool.