Monthly Archives: September 2016

And Tomorrow it Begins

Tomorrow starts Rett Syndrome Awareness Month. Needless to say, all around the world parents, researchers, doctors, aides (the lovely ones, like Curry), siblings, grandparents and loved ones are going to bombard their Facebook pages with statistics, symptoms, pictures of purple … Continue reading

Posted in cure, Dr. Walter Kaufmann, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, NNZ-2566 trial, Rett Research, Rett Syndrome, Rett syndrome conference 2016,, sarizotan, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 2 Comments

Sobering Statistics

A friend recently posted about a gentleman in his 60’s I think, who was losing the ability to speak, slowly but definitely. “A cruel fate”, he called it. Rett syndrome parents can relate to such a statement. I believe Trofinetide … Continue reading

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And the Horizon is That Much Closer!

I’m posting a bit behind the times, this news is already making its rounds about Facebook, but I would be remiss not to give it a shout out. Two days ago, the Chan Zuckerberg Initiative¬†pledged to invest¬†$3 BILLION to cure … Continue reading

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50 Years of Rett syndrome

What I wouldn’t give to be in Vienna right now. You guys in Europe are SO lucky! Today is the last day of the RTT 50.1 conference. What is that? A milestone. 50 years since Dr. Andreas Rett published the … Continue reading

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Fall is on the air, even in California I can feel it. I know that back East, especially in Vermont, the trees are aflame with color. I can picture it, the crispness, the wooden smell of drying leaves, covered bridges … Continue reading

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