Category Archives: Acadia

Share Your SPARKLE!

Posted on May 15, 2024 by melelllan

“Share Your Sparkle” is a new component of Daybue.com where you can share your story about how Daybue has positively impacted your child’s quality of life- a short blurb about a symptom that has improved and a picture is all … Continue reading →

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Rett Revealed!

Posted on April 4, 2024 by melelllan

Due to a misunderstanding on my part, I believed this would be launched in May. I apologize and I am SO excited to introduce- Rett Revealed!! Announcement from Acadia: We are excited to share the launch of Rett Revealed (https://www.rettrevealed.com/)  in honor of … Continue reading →

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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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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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Acadia is All in For Rett

Posted on October 12, 2023 by melelllan

I had the great honor and pleasure to present at an Acadia “Lunch and Learn” event on Oct. 3rd. Over 100 employees were in attendance with more online watching the webcast in San Diego and Princeton. This is the second … Continue reading →

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Rett Sibling Scholarship

Posted on September 25, 2023 by melelllan

Acadia is showing every day that they are “All in for Rett”; they show up at conferences and strollathons; sponsor events; volunteer at the Rett Away; and now THIS!!” “Inspired by the Strength of Siblings Families affected by Rett syndrome … Continue reading →

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Daybue Trail: Two Months In

Posted on August 19, 2023 by melelllan

Technically it was 8 weeks yesterday and two months in 4 days, so no one give me a hard time with my dating 😉 I’ve written a lot over the last few weeks, I wanted people to know it was … Continue reading →

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Daybue Trail: Six Weeks in-Circles and Circling the Wagons

Posted on August 6, 2023 by melelllan

For the first time in about 4 weeks, I can see the trail laying ahead. It’s been a challenge, not unlike the pioneers that came out west in its own way. I love our community; we are each contributing to … Continue reading →

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Daybue Trail: Obstacles, Options and Overcoming

Posted on August 3, 2023 by melelllan

While many families are enjoying a relatively easy ride in the stream of Daybue, other families are struggling to keep up with them as they stumble over obstacles, face flash floods of poop, and encounter distressing factors like weight loss … Continue reading →

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