Tag Archives: Neuren

Let’s Break it Down-5 (Neuren Aims, Shoots, Scores! Slam Dunk!)

  Yes, we have finally reached the last part of the Pediatric Trial Results. Hooray. It was quite a challenge for me and hopefully I made it understandable for everyone. I want to thank those people who explained things to me … Continue reading

Posted in cure, hope, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , | 2 Comments

A Rett Syndrome Mother’s Day

As special parents know, holidays are almost always a let down. Christmas usually sucks so bad it borders on travesty. Mother’s Day is a complicated day for us mothers. First of all, you can almost guarantee that whole eat in … Continue reading

Posted in cure, hope, Neuren, Neuren Pharmaceuticals, rettsyndrome.org, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , , , , | 4 Comments

Neuren and Darwinism : Neurenism?

Originally posted on The Long Tail:
When Benjamin Franklin penned a letter to J-B Leroy, noting that nothing?can be said to be certain, except death and taxes, he memorialised words that apply to natural persons and juridic persons equally. Just…

Posted in Fragile X, Neuren Pharmaceuticals, Rett Syndrome | Tagged , , , , | 3 Comments

The Blue Bird Circle Rett Center at Texas Children’s Neuroscience Center

A nice overall explanation of Rett syndrome, therapies available, and potential drugs (Trofinitide 🙂 ) that may lead to real treatment. Dr. Glaze is a marvelous doctor. He was so calm, committed and excited at every little new thing Katelin … Continue reading

Posted in NNZ-2566 trial, Rett Research, Rett Syndrome, Texas Children's Hospital, Trofinitide | Tagged , , , , , , | Leave a comment

A Lucky Shamrock

Borris, another parent, scatters shamrocks for me amongst his posts. It makes me smile and feels like the little sprinkling of fairy dust that made Peter Pan fly, only I don’t fly, but I do cheer up, and sometimes that’s … Continue reading

Posted in Fragile X, Intrepid 2566, Rett Syndrome, TBI | Tagged , , , , , , , , , | Leave a comment

Brand New Day

Having less than 24 hours to process the events of yesterday, I must say I feel like I am dreaming. Like there is this energy inside me that just doesn’t know where to go or what to do, like I … Continue reading

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