Tag Archives: autism

Trofinetide #2

So, here we go- Why was Rett syndrome chosen for Trofinetide trials. Contrary to what most people think, Trofinetide was not developed for Rett syndrome. A quick google search reveals that it was first developed for stroke, but the focus … Continue reading

Posted in boys with Rett syndrome, cure, Fragile X, hope, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566, Rett syndrome Awareness, TBI, Trail to a Texas 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

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

Animal Apps-Part II

Well, the excitement of a blizzard with hurricane winds is keeping us occupied today, but definitely no going out, can’t see much of my car anyway, lol and a long time to go. Katie’s favorite animal app is SoundTouch. It … Continue reading

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Soon, Just a Phone Call Away

How simple a thing a phone call seems. Katie’s sister sends her videos on the phone for her to watch, and Katelin listens when her sister calls, but not once have they had a conversation, except when Katie was one … Continue reading

Posted in Communication, Neuren, nnz 2566, Phone, Rett Syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , | Leave a comment

It’s a Wonderful Life

No, I’m not talking about the movie! 🙂 As I reflect upon this last year, it’s been almost one full year since we returned from Texas, I wonder, “how can it be a whole year already?!” It still seems like … Continue reading

Posted in Neuren, nnz 2566, Rett Syndrome, Trail to a Texas Trial | Tagged , , , , , , , | 7 Comments

Day 7

I’m tired as I write this and it’s only 6:50 at night. So much of importance happened today. First, it appears Katelin has regained her appetite, and along with it some behavior surrounding hunger. I am disappointed with this as … Continue reading

Posted in Rett Syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 2 Comments