Category Archives: fund-raising for rett syndrome

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

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

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

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 , , , , , , , , | 1 Comment

Go Team Rett!!

Tomorrow, eight amazing people are running the Boston Marathon for our girls and boys. I had the real pleasure of getting to meet some of them yesterday. A small get together at the Lir, in Boston, provided a nice environment to … Continue reading

Posted in Boston Marathon, fund-raising for rett syndrome, Rett Syndrome | Tagged , , , , , , | Leave a comment