Category Archives: Fragile X

The Bleacher Seats

I read an article yesterday from the Bleacher Report about the race for a “concussion pill”. It went on an on about mouse models stage research and there really isn’t even a possible solution in sight just yet. So, being … Continue reading

Posted in concussion, Fragile X, Intrepid 2566, Neuren Pharmaceuticals, NFL, TBI, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , | 3 Comments

Raise Rett Syndrome Awareness

I’ve had my mind on other things, so somehow this escaped me, but today there is an organized push to raise Rett syndrome awareness, through #rettsyndromeawareness While we do devote the entire month of October to Rett Syndrome Awareness, it … Continue reading

Posted in boys with Rett syndrome, chan zuckerberg initiative, Communication, cure, Education, Fragile X, fund-raising for rett syndrome, Intrepid 2566, Neuren Pharmaceuticals, Newron, Rett Research, rettsyndrome.org, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , , , , , | Leave a comment

Another Great Big Step!

A HUGE hurrah for sufferers of Fragile X, their parents and loved ones and Neuren! Today Neuren released its top line results of the Fragile X clinical trial with Trofinetide. Fragile X, much more prevalent than Rett syndrome, affects approx. … Continue reading

Posted in cure, Fragile X, hope, Neuren Pharmaceuticals, Trail to a Texas Trial, Trofinetide | Tagged , , , | 1 Comment

Three more Colors of Dawn

As Rett syndrome Awareness Month comes to a close, I want to bring to attention two other disorders… Fragile X and Traumatic Brain Injury. What do they have to do with Rett syndrome? … Trofinetide and a chance. In the … Continue reading

Posted in cure, FDA, Fragile X, fund-raising for rett syndrome, hope, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566, Rett Syndrome, TBI, Trofinetide, Uncategorized | Tagged , , , , , , , , | 3 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

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