Tag Archives: Rettsyndrome.org

T-?Minutes: Musing 3-Down to the Wire

Well, we’re down to the wire now. This race of results is coming to an end. What a wild ride the last few days have been for the Rett community. Time to stand up and peer down the final stretch. … Continue reading

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , | 2 Comments

Too Much of a Good Thing…Makes me Way Behind!

SO much is going on in the world of Rett syndrome, that I have fallen woefully behind in keeping up. To my defense a lot has been going on in my little world that needed attention, BUT as a State … Continue reading

Posted in boys with Rett syndrome, MecP2 duplication, Rett Research, Rett Syndrome, Rett syndrome Conference 2018, rettsyndrome.org, 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

Heroes and Hugs

Tonight, Katie and I are sitting on the patio of our hotel room, our first Rett conference complete. It will likely take time to process all that we experienced (and devote posts to) but I do know we met a … Continue reading

Posted in cure, hope, Neuren, Neuren Pharmaceuticals, Rett Syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , | 1 Comment

Onward and Upward with Little Girl Steps!

From Rettland.org Yesterday Rettsyndrome.org held a webinar with Steve Kaminsky on the important topic of participating in clinical trials. If you missed it here is a link to the audio. We will all move toward a cure faster when we … Continue reading

Posted in Neuren Pharmaceuticals, rettland.org, rettsyndrome.org | Tagged , , , , | Leave a comment