Category Archives: hope

Poetry Month: Strength Inspired

I thought a lot about what should be the last poem I posted for Poetry Month. Should I go with hope? accepting your lot in life? the poem about the little girl who still counts her dead siblings as alive … Continue reading

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Let’s Break it Down-5 (Neuren Aims, Shoots, Scores! Slam Dunk!)

  Yes, we have finally reached the last part of the Pediatric Trial Results. Hooray. It was quite a challenge for me and hopefully I made it understandable for everyone. I want to thank those people who explained things to me … Continue reading

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T-?Hours: Musing 2-The Stuff of Dreams

So, the results didn’t come out today. Bummer, that. Well, then, it’s just another sleep and a wakeup give or take. So we all get to sleep on it. I’m not worried about tomorrow; I’m certain that, no matter what … Continue reading

Posted in boys with Rett syndrome, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , | 1 Comment

T-? Crunching the Numbers

  There are 31 days in March. That means at noon today, we entered the second half. Which, in turn, means there are less than 15 days until we will know the results of the Trofinetide Pediatric Trial. 360 hours. … Continue reading

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A Day to be Thankful

On this very day, three years ago, I was given a great gift-Belief-Belief that all was possible; that a treatment, a virtual cure, was possible. And, I have Neuren, Margaret Brimble, and a host of people all over the world to … Continue reading

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MecP2 x 2 + Dr. Zoghbi = MecP2; The Best Equation since E=MC2

As most people know, there are many mutations of MecP2 that cause Rett syndrome and more than one disorder associated with the MecP2 gene. One of those disorders is MecP2 duplication. Simply put, if you have too little MecP2 protein … Continue reading

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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

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