Author Archives: melelllan

A Day with ACADIA- Part 2: Assurance

Katelin and I had the great pleasure of being invited to ACADIA a couple of weeks ago for Rett syndrome Awareness Month. Last week I posted Part 1: Awareness; I had PLANNED to follow that closely with Part 2, but … Continue reading

Posted in Acadia, Dame Margaret Brimble, Education, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Leave a comment

Hot off the Presses- The Horses are Outta the Gate!

Well yesterday’s post WAS going to be the last one this month but then I got an email from Acadia- “Hot off the Presses” it said and then this announcement- ACADIA Pharmaceuticals Initiates Phase 3 Pivotal Study of Trofinetide in … Continue reading

Posted in Acadia, Dame Margaret Brimble, hand clasping in Rett syndrome, margaret brimble, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial, Trofinetide Phase III, Uncategorized | Leave a comment

A Day with Acadia- Part 1: Awareness

This is my last post of Rett syndrome Awareness month. I had hoped to do more, but Rett syndrome made sure a good amount of awareness was happening right at home, but this was going to be the last either … Continue reading

Posted in Acadia, Anavex, Anavex 2-73, Communication, Dame Margaret Brimble, fund-raising for rett syndrome, gp2c, hope, ketamine, kyphosis, Neuren, Neuren Pharmaceuticals, Newron, NNZ-2566, NNZ-2566 trial, Remarkable Rett-a podcast series, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, RSRT, sarizotan, service dog, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Leave a comment

20 Years in Oz

Originally posted on Trail To A Texas Trial:
I saw a writing contest advertised on Facebook, the very next ad under it was something to do with the Wizard of Oz…and so I was inspired. I had hoped to get…

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A Trip of a Lifetime

I recently took a trip with Katelin. A long, boring, exhausting trip- more than worth it for the end result, but the getting there and getting back were tough. Katelin threw up on the way back and that was the … Continue reading

Posted in Acadia, Communication, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, Special needs siblings, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | 2 Comments

A Mother Meets a Child She Will Give New Life To

It is no secret that I have high expectations for Trofinetide, I fully expect Katelin will speak; I fully expect her to be able to read and write; I expect that she will be calm, well she is Irish, so … Continue reading

Posted in Acadia, ACS Medicinal Chemistry Division, American Chemical Society, Dame Margaret Brimble, hope, Mark Brimble, Neuren Pharmaceuticals, NNZ-2566, NNZ-2566 trial, Rett Syndrome, TBI, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III | Tagged , , , , , , , , , , | 7 Comments

Close is Too Late for Too Many

As we approach the start of the Trofinetide trial, I know that it is going to go by in a blink.  And, there are other trials in different stages of development, each holding some parent’s hope for their child- improvement … Continue reading

Posted in Acadia, Anavex, Avexis, boys with Rett syndrome, cure, Death in Rett syndrome, grief, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, tracy chapman, Trail to a Texas Trial, Trofinetide Phase III | Leave a comment