Monthly Archives: October 2018

Winding Down

Posted on October 30, 2018 by melelllan

Rett syndrome Awareness #30 October is winding down and we’ve almost made it through the month. As I sit here and write this, I know there are families who didn’t make it through, they lost their children in the days … Continue reading →

Posted in boys with Rett syndrome, cure, fund-raising for rett syndrome, Huda Zoghbi, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, RSRT, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , , , , , | Leave a comment

Trofinetide-WTF is UP???

Posted on October 24, 2018 by melelllan

So, there is a LOT of speculation, misleading and outright misrepresentation of where Trofinetide stands now. So, let’s just get through all this nonsense. Phase III is not being held up because of Acadia. Acadia is FUNDING Phase III in … Continue reading →

Posted in Uncategorized | 2 Comments

Rett syndrome Awareness #14: Suffering in Silence

Posted on October 14, 2018 by melelllan

Yesterday, my awareness was personal, Katie was not feeling well and wanted to “go bed” in the middle of the day. Crying and crying “go bed” “moooommmyyy, go bed” so that’s what we did, we snuggled on the couch until … Continue reading →

Posted in anxiety in Rett syndrome, Communication, cure, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Research, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Trail to a Texas Trial, Trofinetide, Uncategorized | Leave a comment

Rett syndrome Awareness #8

Posted on October 8, 2018 by melelllan

I’m sure people reading this blog are going to go… what happened to the other 7??? Some have been close to posts on this blog so I’ve just posted to Facebook, but I don’t believe I’ve touched upon this particular … Continue reading →

Posted in Acadia, Ataxia, cure, Fragile X, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, Uncategorized | Tagged , , , , , , | Leave a comment

A Little Trip, A LOT of Hope!

Posted on October 2, 2018 by melelllan

A few weeks ago, Katelin and I were invited to go to Acadia! On a whim, I googled “Acadia” to see what might popup. First up, beautiful Acadia National Park. Definitely would like to go there! Actually, I can’t believe … Continue reading →

Posted in Acadia, cure, FDA, fund-raising for rett syndrome, hope, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , | 3 Comments