Tag Archives: Rett syndrome

A Body Bound by a Brain #2

You can feel it, when you’re right there. A quiet rumble at first, but within a blink of an eye, your world is shaking. It’s like time stands still, every second feels like a minute; and then, if you’re lucky, … Continue reading

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 5 Comments

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”.┬áMy 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 , , , , , | 103 Comments

A Month of Awareness

  October is Rett syndrome Awareness Month. This means of course to make OTHER people aware of Rett syndrome; for us parents, siblings, grandparents, caregivers the whole YEAR is awareness month.   So, how to make people aware? There are … Continue reading

Posted in Army of us, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome, rettsyndrome.org, Special needs siblings, Trail to a Texas Trial | Tagged , , , | 5 Comments

The Bleacher Seats

I read an article yesterday from the Bleacher Report about the race for a “concussion pill”. It went on an on about mouse models stage research and there really isn’t even a possible solution in sight just yet. So, being … Continue reading

Posted in concussion, Fragile X, Intrepid 2566, Neuren Pharmaceuticals, NFL, TBI, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , | 3 Comments

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