Category Archives: NNZ-2566 trial

A Body Bound by a Brain #3

Oh, don’t us parents, all of us, just get so excited when our babies pass milestones- the first smile, the first laugh, the first time rolling over, the first step, the first word. The first word. That brilliant first word, … Continue reading

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Communication, cure, Neuren Pharmaceuticals, NNZ-2566 trial, Phone, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , | 1 Comment

Getting a Glimpse of the Emerald City

I woke today from a nightmare, that Katie had died. That she didn’t make it to when Trofinetide was available. I watched as she slipped away, Fox laying on her chest, going up and down and then he stopped. This nightmare … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, NNZ-2566 trial, Rett Research, Rett Syndrome, Wizard of Oz | Leave a comment

My Heart is in Her Hands

                                                                This is an updated post from two years ago.   Fact: Abnormal hand movements. As the disease progresses, children with Rett syndrome typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping or rubbing.(Taken from … Continue reading

Posted in Communication, cure, Education, hope, NNZ-2566 trial, Rett Syndrome, Rett syndrome conference 2016, Trofinetide, Uncategorized | Tagged , , , , , , , , | Leave a comment

And Tomorrow it Begins

Tomorrow starts Rett Syndrome Awareness Month. Needless to say, all around the world parents, researchers, doctors, aides (the lovely ones, like Curry), siblings, grandparents and loved ones are going to bombard their Facebook pages with statistics, symptoms, pictures of purple … Continue reading

Posted in cure, Dr. Walter Kaufmann, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, NNZ-2566 trial, Rett Research, Rett Syndrome, Rett syndrome conference 2016, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 2 Comments

The Short Story and It’s Long Reaching End

 Yesterday, I was contacted by a Neuren Rep wondering if I had heard of the Pediatric Trial with NNZ (Trofinetide) and would I mind promoting it. I had an inward chuckle at that 🙂 and she sent me a blurb, … Continue reading

Posted in Intrepid 2566, NNZ-2566 trial, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , , , , | 1 Comment

It’s a Whole New Ballgame, Bring on Little League!

I have been on a bit of hiatus from all writing as Katelin and I settle in our new home of California. While I have been consumed by all the things parents of special needs children have to do after … Continue reading

Posted in cure, fund-raising for rett syndrome, Neuren Pharmaceuticals, NNZ-2566 trial, Rett Research, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , | 6 Comments

Raring to Go!

Even though Katelin will not be participating in the next trial with Trofinetide, it is impossible not to be excited. I am so filled with optimism as the list of approved sites continues to grow, making participation easier and possible … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, NNZ-2566 trial, Rett Syndrome, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , | 1 Comment