Monthly Archives: February 2017

#JillyStrong

I love all our girls and boys, but Jilly has a special place in my heart, in many of our hearts. Her mom has been a rock for many of us. Jilly is one of the first other Rett girls … Continue reading

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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

…And, It’s a Wrap!

Neuren announced on Monday that the last pediatric trial participant had completed the Trofinetide trial and that results are due out the second half of March. See their announcement HERE! I want to thank all the parents and children who … Continue reading

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