Tag Archives: children

Following the Yellow Brick Road!

I have been quiet of late, a lot go on in the Rettland we inhabit. A bunch of common stuff for Rett syndrome came up, doctor appts and training Katelin’s service pup, Flynn, has taken up a LOT of my … Continue reading

Posted in baseball, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , | Leave a comment

Awareness Through New Eyes

We are half-way through Rett syndrome Awareness month. So far, it’s sucked; not only for the Rett syndrome community, but I know for the FoxG1, as well. I also know when we speak of “Awareness” it’s usually in the context … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, Rett Syndrome, the sea, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , | Leave a comment

Vive la France!

Ok, Rett families, our French families need our help! They are in the running for an award of $20,000 Euros that would go toward a retreat for families in France. Last year, we all helped them win and they used … Continue reading

Posted in Association Francaise du Syndrome de Rett, French Rett Syndrome Association, Uncategorized | Tagged , , , , , , | Leave a comment

Gold Medal Kids

Recently, Katelin rode a camel! Mind you, it took longer to get her ON  the camel than the ride was, but she did it. And loved it.  Rett syndrome is so often a race; a race to the hospital, to … Continue reading

Posted in animals, cure, hope, Trail to a Texas Trial, 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

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

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