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melelllan on A Decade of Hope Fa BEL on Daybue Trail: 2 Weeks Uni… melelllan on Daybue Trail: Two Months … Rune on Daybue Trail: Two Months … dian dana on Growing up One in a Milli… Archives
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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, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Trofinetide
Tagged Blue Sky Girls, cure, Maya DiMeo, Minnie Driver, Neuren Pharmaceuticals, Newron, purple, research, Rett syndrome Awareness, Speechless, strollathon, Trofinetide
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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
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
Posted in cure, Dr. Walter Kaufmann, hope, Rett Research, Rett Syndrome, rettsyndrome.org
Tagged Dr. Alan Percy, Dr. Andreas Rett, Dr. Helen Leonard, Dr. Huda Zoghbi, Dr. Jeffrey Neul, Dr. Walter Kaufmann, Kathy Hunter, Paige Nues, Rett conference, Rett syndrome research, RTT 50.1, Vienna
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Fall
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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Trail to a Texas Trial 