Bonnie over at The Fragile X Files shared an article from the Seattle Times, The mining of rare diseases, and her thoughts about it. I have so many thoughts right now that I am having trouble teasing them apart. I guess I can start here, with this from her blog post:
But we, the . . . → Read More: Fragile X and fragile hope.
Earlier this week, John Robison resigned his roles on the Science and Treatment Boards of Autism Speaks. You can read the full resignation letter here.
John has autism. One particular paragraph in the letter grabbed me, I’ve read it over and over. In stray moments since Wednesday I’ve stopped to think about it, and . . . → Read More: Time for a new story?
Over the weekend, Eric and I were in Connecticut for the 6th Annual Fragile X Conference sponsored by The Fragile X Society of Connecticut. While we were selling t-shirts, hugging new friends and old and learning a ton…this happened.
And this morning we watched bits of Charlie Brown, The Grinch and Frosty the . . . → Read More: And so it begins…
Every November 1st I say that I won’t do this again and every October my brain short circuits and my need to give Caleb all the same experiences as other kids kicks in. I start plotting…just a *little* something costume-ish without him being aware that it’s a costume…surely that will work! And every single . . . → Read More: There was no Halloween miracle.