Monthly Archives: October 2017

What do Halloween and Rett syndrome have in Common? Superheroes.

Posted on October 31, 2017 by melelllan

Today is the last day of October. Another year gone by from one Awareness Month to the next and still no treatment. But this is not a humdrum post BECAUSE treatment is now within sight. Each year in October superhero … Continue reading →

Posted in Anavex, Anavex 2-73, boys with Rett syndrome, cure, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, sarizotan, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , | Leave a comment

Body Bound by a Brain #4

Posted on October 24, 2017 by melelllan

A roller coaster twists and turns and bends. It can take your breath away. So does Rett syndrome, in a whole other, non-exhilarating, way. Rett syndrome twists and turns and bends our children’s bodies, often taking their breath away.   … Continue reading →

Posted in bone deformity in Rett syndrome, kyphosis, Rett Research, Rett Syndrome, Rett syndrome Awareness, scoliosis, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 1 Comment

A Body Bound by a Brain #3

Posted on October 20, 2017 by melelllan

Oh, don’t us parents, all of us, just get so excited when our babies pass milestones- the first smile, the first laugh, the first time rolling over, the first step, the first word. The first word. That brilliant first word, … Continue reading →

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Communication, cure, Neuren Pharmaceuticals, NNZ-2566 trial, Phone, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , | 1 Comment

A Body Bound by a Brain #2

Posted on October 14, 2017 by melelllan

You can feel it, when you’re right there. A quiet rumble at first, but within a blink of an eye, your world is shaking. It’s like time stands still, every second feels like a minute; and then, if you’re lucky, … Continue reading →

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 5 Comments

Neuren Gets the Green Light!

Posted on October 13, 2017 by melelllan

Well, I was NOT one of the first to get to social media today with the fantabulous news that Neuren has got the go ahead to do a Phase III pivotal trial with Trofinetide. I apologize, it was a day … Continue reading →

Posted in cure, FDA, hope, margaret brimble, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , | 4 Comments

A Body Bound by a Brain #1

Posted on October 10, 2017 by melelllan

  When people see a young child with Rett syndrome, parents often get “they look normal.” It’s almost like a question, as if questioning the parent that they’re child is actually disabled. It’s a weird sensation in that moment-there’s nothing … Continue reading →

Posted in Communication, cure, fund-raising for rett syndrome, hand clasping in Rett syndrome, hope, Rett Research, Rett Syndrome, Rett syndrome Awareness, Talking, Trail to a Texas Trial | Tagged , , , , , | 1 Comment

Putting the “Fun” in Fundraising

Posted on October 9, 2017 by melelllan

All over the country and world people are promoting Rett syndrome Awareness in many ways. There are fund-raisers galore and many ways the general public can participate. In California there are the upcoming SoCal picnic (Oct 21) and the NorCal … Continue reading →

Posted in cure, Rett Research, Rett Syndrome, Trail to a Texas Trial | Tagged , , | Leave a comment

This is all the Awareness we can Handle for the Day

Posted on October 8, 2017 by melelllan

http://www.democratandchronicle.com/story/news/2017/10/04/fairport-shooting-two-found-dead-in-fairport/730605001/ And now the Rett community is left with questions? Why? I guess that’s the only one. Why? WHY?

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It’s Bad, but it ain’t ALL Bad

Posted on October 5, 2017 by melelllan

Let’s just put it in the simplest of terms…Rett syndrome sucks. It sucks bad. And,  a lot of the posts I’ll do this month will be about how bad it sucks. But, today, because there is so MUCH horribleness in … Continue reading →

Posted in anxiety in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, Uncategorized | Tagged , , , , | 11 Comments

October Siblings

Posted on October 3, 2017 by melelllan

This post, from three years ago, really struck a chord in people. It was the highest viewed post ever. And, the most shared. Rett syndrome Awareness is not just about Rett syndrome, it’s about the families who love them…. One of … Continue reading →

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Rett Syndrome, screaming in rett syndrome, Uncategorized | Tagged , , , , | 3 Comments