Monthly Archives: March 2023

Intrepid-2566

Posted on March 30, 2023 by melelllan

This blog is going to be from memory, though I think I’ll get it right. Intrepid-2566, such a grand undertaking-to save the soldiers that suffered TBI. One might think being a veteran this one is near and dear to my … Continue reading →

Posted in Daybue, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566, TBI, Trofinetide | 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

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

Neuren talks Daybue!

Posted on March 16, 2023 by melelllan

What can I say about Neuren? It’s where it all began so many, many years ago. Well, I can start out by saying they are laying the praise on Acadia and so should we all. They took a pandemic in … Continue reading →

Posted in Acadia, Daybue, Neuren Pharmaceuticals | 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

Women’s Day 2023-Eunice Kennedy Shriver and Margaret Brimble

Posted on March 8, 2023 by melelllan

There are so many women we could each honor on this day-adventurers, dreamers, artists, civil rights’ leaders and volunteers, astronauts, scientists, women who, in the famous words of Robert Kennedy said… “I dream of things that never were and ask … Continue reading →

Posted in Dame Margaret Brimble, Trofinetide | Tagged , , , | Leave a comment

Lilac-the Sweet Smell of Success

Posted on March 6, 2023 by melelllan

When I was very little, I couldn’t have been more than five, we lived in a two-story home. It was blue-gray as I recall and had a large front porch. On the left side of the stairs going up to … Continue reading →

Posted in Acadia, Rett Research, Rett Syndrome | Tagged , | Leave a comment

T-11 Musing

Posted on March 2, 2023 by melelllan

Butterflies. There’s nothing quite like a butterfly-fragile, so tiny a thing and yet it survives against insurmountable odds- winds, cold, heat, storms, people. Butterflies have a special place in our hearts as so many of our community liken their children … Continue reading →

Posted in Uncategorized | Tagged , , , | 1 Comment