Tag Archives: Trofinetide

Daybue Trail: A New Year

Posted on January 7, 2024 by melelllan

It’s now January and we have entered the first year, in the history of the world, where there is no longer NOT a treatment for Rett syndrome. Astonishing. On the heels of Daybue (trofinetide) are other encouraging treatments- Anavex 2-73, … Continue reading →

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A Decade of Hope

Posted on November 19, 2023 by melelllan

Ten years ago, today, Katelin proved to me that there was hope-the war against Rett syndrome could be won. Hope is a powerful thing. When I was young, I read a story about a POW in Vietnam who had sewed … Continue reading →

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Daybue Trail: Day 21-26

Posted on July 19, 2023 by melelllan

What can I say, my child is a rock star. Despite ALL the challenges, a diaper rash that is kicking her butt, an appetite that can’t seem to find the bread crumbs back to home, and topped off with antibiotics, … Continue reading →

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Daybue Trail: Day 16-20

Posted on July 13, 2023 by melelllan

Well, what a day. About two days ago, Katelin completely stopped eating, well, according to her day program she was eating all of her meal there, which I find a bit suspicious since she’s eaten nothing at home. However, originally … 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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Daybue Trail: Day 1

Posted on June 24, 2023 by melelllan

I need to tell you the story of how I didn’t kill myself by banging my head into the tabletop for the last month! We went to see Katelin’s Rett doctor, had a great appointment; he agreed with the dosing … Continue reading →

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Daffodill’s Debut!

Posted on May 8, 2023 by melelllan

We all know that Daybue (trofinetide) has been approved for the treatment of Rett syndrome in children and adults 2 and up. Besides that, very little information has been released about the Daffodill trial (for ages 2-4). Recently, Acadia presented … Continue reading →

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IRSF Presents: Parents’ Daybue Trial Experiences

Posted on May 7, 2023 by melelllan

This is a webinar you do not want to miss! Live Parent Panel: My Trofinetide Clinical Trial Experience May 11, 2023 7pm-8pm Eastern time “Join IRSF for a candid Q&A with parents whose daughters participated in different stages of the … Continue reading →

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It’s a Brand New Day(bue)

Posted on April 17, 2023 by melelllan

The words I have waited for for over 9 years- “(trofinetide) is now available for the treatment of Rett syndrome in adult and pediatric patients two years of age and older in the United States” See Acadia’s announcement- HERE! Starting … Continue reading →

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DAYBUE’s Day is Almost Here!

Posted on April 13, 2023 by melelllan

Oh, how the days are just flying by now! Only a month since the announcement and so much has already happened! Acadia has come out of the starting box at a gallop! AcadiaConnect.com was up and running on March 13. … Continue reading →

Posted in Acadia, Acadia Connect, Daybue | Tagged , , , , | 4 Comments