Tag Archives: Rett syndrome

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

Body Bound by a Brain #4

A roller coaster twists and turns and bends. It can take your breath away. So does Rett syndrome, in a whole other, non-exhilarating, way. Rett syndrome twists and turns and bends our children’s bodies, often taking their breath away.   … Continue reading

Posted in bone deformity in Rett syndrome, kyphosis, Rett Research, Rett Syndrome, Rett syndrome Awareness, scoliosis, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 1 Comment

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 , , , , , | 134 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