Tag Archives: Rett syndrome

Mother’s Day in Oz

I often say that living with Rett syndrome is like traveling in Oz with the Scarecrow, Tin Man and Lion. So, what would Mother’s Day look like there? I think it would happen in the Poppy Field. Such a beautiful … Continue reading

Posted in Mother's Day, Rett Syndrome, Special needs Mother's Day, Uncategorized, Wizard of Oz | Tagged , , , , , , , , , , , , , | 1 Comment

Poetry Month: Pain inspired

Many, many years ago, while taking a course in college they gave us this book of poems, rather we BOUGHT this book of poems. And it is my favorite. I still read it from time to time. One of my … Continue reading

Posted in grief, national poetry month, Poetry, Rett Syndrome, Uncategorized | Tagged , , , , , | 1 Comment

T-? Crunching the Numbers

  There are 31 days in March. That means at noon today, we entered the second half. Which, in turn, means there are less than 15 days until we will know the results of the Trofinetide Pediatric Trial. 360 hours. … Continue reading

Posted in boys with Rett syndrome, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , , , | Leave a comment

T -? The Countdown Begins!!!

Today is the first day of March, otherwise known as “the month the RESULTS come out”.  Yes! The Trofinetide Pediatric Phase IIb trial results are almost here. How long can one hold their breath??? I remember exactly how I was … Continue reading

Posted in cure, Neuren Pharmaceuticals, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , | 3 Comments

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

Vive la France!

Ok, Rett families, our French families need our help! They are in the running for an award of $20,000 Euros that would go toward a retreat for families in France. Last year, we all helped them win and they used … Continue reading

Posted in Association Francaise du Syndrome de Rett, French Rett Syndrome Association, Uncategorized | Tagged , , , , , , | Leave a comment

A One in a Million Boy

  Rett syndrome affects 1:10,000-15,000 females. You hear all kinds of statistics about girls; almost all literature has only the pronouns “she” and “her”.  Even doctors will talk in terms of only girls. Trials are only compiled of girls. But, … Continue reading

Posted in boys with Rett syndrome, Klinefelter's syndrome, Rett Syndrome, Rett syndrome conference 2016, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 4 Comments