Category Archives: Trail to a Texas Trial

Daybue, A Year in Review

Posted on March 14, 2024 by melelllan

I’m sorry I’m 3 days late. I should have had this post to GO! But blog writer fail there. March 10, 2023, the day that ended the “no treatment” era of Rett syndrome. It’s largely true that the first couple … Continue reading →

Posted in Acadia, Acadia Connect, Dame Margaret Brimble, Daybue, FDA, Neuren Pharmaceuticals, Trail to a Texas Trial, Uncategorized | Leave a comment

Daybue Trail: (Not Really as) Easy as 1,2,3

Posted on January 25, 2024 by melelllan

Oh, this is not an easy trail to be sure, but after about two weeks at full dose it’s easy to see improvements- motor-wise she’s zooming up, language-wise she’s noticeably improving, though not at the extraordinary rate I saw in … Continue reading →

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Daybue Trail: 3 Months In

Posted on September 29, 2023 by melelllan

Well, this sure has been a rollercoaster of a ride; I don’t think it’s stopped, but I do think we are slowing down. Things seem to be settling in the Rett doctor community with each bit of information, parent input, … Continue reading →

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Daybue Trail: One Month In

Posted on July 27, 2023 by melelllan

Above all, this month has proved to me again just how brave Katelin is. It’s been a challenge for me as I’ve worn a lot of different hats-nurse, doctor, mad scientist, maid, laundry master extraordinaire, Sherlock Holmes, and Mom. This … Continue reading →

Posted in Acadia, Daybue, Rett Syndrome, screaming in rett syndrome, Trail to a Texas Trial | Tagged , , , | Leave a comment

Daybue Trail: Daybue Triumphs

Posted on July 17, 2023 by melelllan

Trails run the gamut of simple and smooth to boulders and steep inclines, that’s the kind of trail Daybue is, full of both. So, WE are three weeks in, but others are three MONTHS in; time is definitely on their … Continue reading →

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Daybue Trail: Day 5-10, A Week that Won’t Slow Down!

Posted on July 3, 2023 by melelllan

Today marks day 10 of Katelin being on Daybue. We’ve been through them gamut! No behavior to screaming to tears to laughing to sobbing “mooooommmmm”. My poor girl doesn’t seem to know what to feel or what she’s feeling. There … Continue reading →

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Daybue Trail: Days 3-5

Posted on June 29, 2023 by melelllan

I’m trying to get to this every day, but things are ZOOMING so quickly along that I cannot keep up! Unfortunately, not all of this will be in order. I was hoping that a journal was coming, but they’re on … Continue reading →

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IRSF Scientific Meeting, Daybue and More

Posted on June 19, 2023 by melelllan

The International Rett Syndrome Foundation (IRSF) held its Scientific Meeting on June 5-7, featuring presentations from Acadia, Taysha, Neurogene, and NeuroTec. Anavex did not present as they had no new information to share. Acadia presented LILAC data and introduced a new Real World Efficacy study called LOTUS. Unfortunately, any data presented at the meeting is not publicly available, but a summary will be provided by IRSF at a later date. Dr. Jim Youakim gave a historical presentation about Trofinetide’s development, with an emphasis on the LAVENDER study and challenges Acadia faced during the pandemic. Continue reading →

Posted in Acadia, Anavex, Daybue, IRSF, LAVENDER TRIAL, Neuren Pharmaceuticals, Rett Syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , | Leave a comment

The Day the Flowers Bloomed in Oz

Posted on March 20, 2023 by melelllan

Not many know this, but I am a children’s author (ok, it’s only two books, but it counts!) and I’m very proud of that. I am also a published poet and my greatest honor was being asked to write a … Continue reading →

Posted in Acadia, Dame Margaret Brimble, FDA, hope, Neuren, Rett Syndrome, Trail to a Texas Trial | Tagged , , | 1 Comment

Ashtyn’s Story

Posted on February 23, 2023 by melelllan

Part VI of this series demonstrates the human capacity to take adversity and find the good. In the Rett world, adversity comes at us from so many angles, but, if we’re lucky and if we have open hearts and minds, … Continue reading →

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