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 as close to flying as you get in this world of Rett. And, I got to thinking, Trofinetide is a shamrock, too. Three parts of a whole, that symbolizes good luck-


Part one-TBI http://www.intrepid-2566.com

From Intrepid-2566.com

Why is the Army Involved?

Over the past 10 years, the incidence of traumatic brain injury (TBI) experienced by armed forces personnel  in the conflicts in Afghanistan and Iraq has increased significantly over that seen in previous wars.  TBI is a leading cause of battlefield death and long term disability.  It is estimated that upwards of 60%* of all combat related casualties that are admitted to Walter Reed Army Medical Center or Bethesda Medical Center may be suffering from some level of brain injury. Increased attention and funding has been given to ways of protecting service members from TBI, to improving medical care and resources for recovery following a TBI, and for research into new drugs and other approaches to treat TBI.  To advance the care and treatment of TBI patients, the military conducts research and collaborates with many public and private organizations to investigate the potential usefulness of new medicines to improve recovery. NNZ-2566 is one such drug and in addition to the early work on NNZ-2566 that was undertaken by scientists at the US Army’s research laboratories, the US Army has further supported the testing of this drug in TBI by awarding two grants to help complete of the INTREPID-2566 study.

*Statistic from the Combat Casualty Care website at this link.

Yes, we can all thank the US Army for funding Neuren and NNZ-2566 and for proving it was safe in adults. Usually I say “Go NAVY”, but for this I will give the Army its due.


Part two- Rett syndrome https://www.rettsyndrome.org/media-center/neuren-nnz-2566-successful-phase-2-trial

Most people know by now how encouraging the results of the Phase II were. Last week, when I attended the RSAM meeting (Rett syndrome Association of Massachusetts), Dr. Kauffman said that a Phase II Pediatric trial would most likely be next, followed by a Phase III for ages 3/5-45, with multiple sites recruiting. This is very good news and not deterred by the idiotic (IMO) denial of Breakthrough Therapy Designation by the FDA; it was the next already planned step that is moving forward anyway.


Part three- Fragile X http://www.fraxa.org/neurens-nnz-2566-shows-clinical-benefit-rett-syndrome-phase-2-trial/ and http://www.fraxa.org/neuren-fragile-x-study-trofinetide-nnz-2566/

Just as the results from the Army’s trial encouraged me, personally, and likely Rett researchers and other parents in the trial, the Phase II results for Rett syndrome are encouraging the Fragile X community, as well they should.

Of course, these three are not the only goals slated for Trofinetide, tackling Autism is within sight as well.

Three trials;three parts of a whole. Trofinetide-sowing a field of shamrocks for the millions.


This entry was posted in Fragile X, Intrepid 2566, Rett Syndrome, TBI and tagged , , , , , , , , , . Bookmark the permalink.

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