Category Archives: Communication

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

Let’s Break it Down-4

Well! If the last section was a stormy sea of up and down graphs and whirlpools of numbers, I think we’re in for some smoother sailing now! In the last post, three of the five measurements used in this trial … Continue reading

Posted in anxiety in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , | Leave a comment

Raise Rett Syndrome Awareness

I’ve had my mind on other things, so somehow this escaped me, but today there is an organized push to raise Rett syndrome awareness, through #rettsyndromeawareness While we do devote the entire month of October to Rett Syndrome Awareness, it … Continue reading

Posted in boys with Rett syndrome, chan zuckerberg initiative, Communication, cure, Education, Fragile X, fund-raising for rett syndrome, Intrepid 2566, Neuren Pharmaceuticals, Newron, Rett Research, rettsyndrome.org, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , , , , , | Leave a comment

Speechless

In case you are slow to know, there’s a new show out there. One that speaks for US, the families of the speechless. It’s funny! Hey, we have incredibly funny lives at times. It has great lines like….”Other people’s opinions … Continue reading

Posted in Communication, Education, Special needs siblings, Speechless, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

My Heart is in Her Hands

                                                                This is an updated post from two years ago.   Fact: Abnormal hand movements. As the disease progresses, children with Rett syndrome typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping or rubbing.(Taken from … Continue reading

Posted in Communication, cure, Education, hope, NNZ-2566 trial, Rett Syndrome, Rett syndrome conference 2016, Trofinetide, Uncategorized | Tagged , , , , , , , , | Leave a comment

Conference Post 4-Behavioral Issues…What? Why? and What’s being done.

Dr. Kaufmann’s presentation,”Behavior Issues and Management,” was  a must go to for me. In my previous post, I concentrated on how behavioral issues affect the caregivers and family. Now, I’d like to talk about the key points he made in … Continue reading

Posted in anxiety in Rett syndrome, Communication, Dr. Walter Kaufmann, Education, Rett syndrome conference 2016, Talking, Trail to a Texas Trial | Tagged , , , , , , | 2 Comments

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