Tag Archives: hope

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

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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

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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

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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

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