Category Archives: Acadia Connect

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

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 →

Posted in Acadia, Acadia Connect, Rett syndrome Awareness | Leave a comment

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 →

Posted in Acadia, Acadia Connect, Daybue | Tagged , , , , , , , | Leave a comment

A Day in San Diego :)

Posted on May 19, 2023 by melelllan

No clever title this time 😉 Just a day, but not a day like any other day and we made the most of it. First up was a visit to the Rett Clinic to see Dr. Richard Haas. Twenty-eight years … Continue reading →

Posted in Acadia, Acadia Connect, Daybue, Uncategorized | Tagged , , , , , | 1 Comment

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

Acadia Connect is your Connection!

Posted on March 18, 2023 by melelllan

Now that we have accepted that, yes Daybue has been approved, many have already contacted your providers to make sure they will order it. What is next after that??? This is where AcadiaConnect comes in! Once you have been given … Continue reading →

Posted in Acadia, Acadia Connect, IRSF, Uncategorized | Tagged , | Leave a comment

Daybue’s Debut Conference Call by Acadia

Posted on March 13, 2023 by melelllan

Disclaimer *Any comments on data are mine alone and are not confirmed nor authorized by Acadia​* Acadia held an investor’s conference call today on the FDA approval of Daybue (trofinetide). While the call was for investors, there were several areas … Continue reading →

Posted in Acadia, Acadia Connect, boys with Rett syndrome, Daybue, FDA | Tagged | 1 Comment

BLAST OFF!!!! Part 1

Posted on March 12, 2023 by melelllan

It would be hard to believe that anyone in the Rett community has not heard the news- Daybue (trofinetide) was approved by the FDA yesterday!!! This is TREMENDOUS news for all of us. You can read Acadia’s official announcement- HERE … Continue reading →

Posted in Acadia, Acadia Connect, Daybue, FDA, Trofinetide, Uncategorized | 1 Comment