Monthly Archives: July 2016

Conference Post 3-It Ain’t all about the Kids.

Dr. Kaufmann (who will be getting a few posts here) gave a presentation about the behavioral issues in Rett children and adults. I’m going to do it in two parts. I can’t find the booklet today that gives the title of … Continue reading

Posted in anxiety in Rett syndrome, Dr. Walter Kaufmann, Rett syndrome conference 2016, Special needs siblings, Trail to a Texas Trial | Tagged , , , , | 1 Comment

Conference Post 2- Raise Your Hand

I find it hard to decide what order to do these posts in; what struck me, may not be what struck others. However, I believe I can say we were all struck by Kevin Black. Kevin’s daughter, Cortney, passed away … Continue reading

Posted in David Clements, Kevin Black, Raising a Hand, Rett syndrome conference 2016, Uncategorized | Tagged , , , , , , , , , | Leave a comment

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

Conference Post 1-A Family Reunion

It’s hard to believe that two weeks have already passed since the Rett syndrome conference took place. I haven’t really had time to reflect on it since Katelin and I have been traveling all that time, but I didn’t want … Continue reading

Posted in Rett syndrome conference 2016, Uncategorized | 1 Comment