Category Archives: nnz 2566

20 Years in Oz

I saw a writing contest advertised on Facebook, the very next ad under it was something to do with the Wizard of Oz…and so I was inspired. I had hoped to get this published, but no takers. However since this … Continue reading

Posted in cure, FDA, nnz 2566, Rett Syndrome, Trail to a Texas Trial, Trofinetide, Uncategorized, Wizard of Oz | Tagged , , , , | 3 Comments

And….the President Answers

  Dear Melinda: Thank you for writing, and for your service and sacrifice. I have heard from too many Americans whose lives have been affected by a wide range of health conditions and diseases. Whether they are common, preventable ailments … Continue reading

Posted in nnz 2566, Rett Syndrome, Trail to a Texas Trial, Trofinetide, white house | Tagged , , , | Leave a comment

The Pen is Mightier than the Denial

Soooo…… I haven’t reached the “Let it Be” part of my last post, just yet. I tried, I took lots and lots of deep breaths, before my neuromuscular disease kicked in and I needed to stop that. Now, I’m doing … Continue reading

Posted in Neuren, Neuren Pharmaceuticals, nnz 2566, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Leave a comment

One Step Closer

It is just after midnight and my girl is sleeping (thank goodness!!) and I wonder if her and other Rett children’s dreams just became filled with butterflies. Why butterflies? Because they are to me a most beautiful symbol of metamorphosis, of … Continue reading

Posted in FDA, Neuren, nnz 2566, Rett Syndrome, Trofinetide | Tagged , , , , , , , , | 4 Comments

Tick Tock, Hurry up Clock!

Katie’s favorite author, alas, is not me; it’s Dr. Seuss. So, in the spirit of Dr. Seuss…. Tick Tock, hurry up clock. There is a place known as the Land of Rett and in the middle of town, there’s a … Continue reading

Posted in nnz 2566, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , | 4 Comments

The Road from Here to There- the next 28 steps

Well, we are counting down now, 28 days or less, 28 steps or less, ’til we turn another bend in a treatment for Rett syndrome; the FDA’s time to respond to Neuren’s application for Orphan Drug Status and Breakthrough Therapy … Continue reading

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What’s in a Name?

In a lifetime, names are some of the most important words we’ll ever know. Picture that expectant mom and dad- sometimes they’ve known for years what they wanted to name their baby-a family name, a favorite relative, a junior, a … Continue reading

Posted in Neuren, nnz 2566, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Tagged , , , , | 6 Comments