Tag Archives: hope

What do Halloween and Rett syndrome have in Common? Superheroes.

Today is the last day of October. Another year gone by from one Awareness Month to the next and still no treatment. But this is not a humdrum post BECAUSE treatment is now within sight. Each year in October superhero … Continue reading

Posted in Anavex, Anavex 2-73, boys with Rett syndrome, cure, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, sarizotan, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , | Leave a comment

Poetry Month: Strength Inspired

I thought a lot about what should be the last poem I posted for Poetry Month. Should I go with hope? accepting your lot in life? the poem about the little girl who still counts her dead siblings as alive … Continue reading

Posted in cure, hope, Rett Research, Rett Syndrome, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

The World Series of Trofinetide

I often equate this process of getting Trofinetide to market to baseball. The teams, the hits, the homers, the errors, the running of the bases-this is a metaphor that I find very appropriate. And now, given the incredible, almost unbelievable … Continue reading

Posted in cure, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , | Leave a comment

And the Horizon is That Much Closer!

I’m posting a bit behind the times, this news is already making its rounds about Facebook, but I would be remiss not to give it a shout out. Two days ago, the Chan Zuckerberg Initiative pledged to invest $3 BILLION to cure … Continue reading

Posted in chan zuckerberg initiative, cure, Huda Zoghbi, Uncategorized | Tagged , , , , , | Leave a comment

Gold Medal Kids

Recently, Katelin rode a camel! Mind you, it took longer to get her ON  the camel than the ride was, but she did it. And loved it.  Rett syndrome is so often a race; a race to the hospital, to … Continue reading

Posted in animals, cure, hope, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , | Leave a comment

Conference Post 2- Raise Your Hand

I find it hard to decide what order to do these posts in; what struck me, may not be what struck others. However, I believe I can say we were all struck by Kevin Black. Kevin’s daughter, Cortney, passed away … Continue reading

Posted in David Clements, Kevin Black, Raising a Hand, Rett syndrome conference 2016, Uncategorized | Tagged , , , , , , , , , | Leave a comment

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