Tag Archives: Cure Rett Syndrome

All is Not Quiet on the Trofinetide Front #1 A Chess Game

It’s been very quiet in the public eye in regard to Trofinetide. We all are in a holding pattern as we wait for Phase III to begin, but BEHIND the scenes things are progressing strategically and clearly, like a chess … Continue reading

Posted in Acadia, anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, breakthrough therapy, Communication, cure, FDA, Fragile X, hope, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Trofinitide, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Putting the “Fun” in Fundraising

All over the country and world people are promoting Rett syndrome Awareness in many ways. There are fund-raisers galore and many ways the general public can participate. In California there are the upcoming SoCal picnic (Oct 21) and the NorCal … Continue reading

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Grieving a Child Gone, yet Still Here

For many parents, I’d almost dare to say all, Life can be categorized as “Life before Rett syndrome” and “Life after Rett syndrome”. My daughter, Katie, is 24 now. For 22.5 years I have loved the child in the “Life after … Continue reading

Posted in boys with Rett syndrome, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , | 139 Comments

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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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

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

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