A few weeks ago I went to a golf tournament in Northern California for Rett Syndrome and I made a video about it. It’s a great event, very well run, and I think as a result, I’m going to get Continue Reading
Father’s Day
We spent father’s day with my family on the East Coast. We’ve written about it before – how much she enjoys her cousins; and this trip was no different. I think there’s a special bond with family that she understands Continue Reading
Last Day Of School
Year 1 of school is in the books. Hard to believe how difficult a decision it was for us to even send her to school. We were so nervous that she would lose more of her hand function, more of Continue Reading
Connecticut Commie…
A friend from high school interviewed me for her blog. As much as I talk about Rett Syndrome, I’m always grateful when someone else actually asks me to. http://ctcommie.blogspot.com/2015/05/a-fathers-advocacy-for-rett-syndrome.html
Memorial Day and Communication
We’ve been trialling a different eye gaze computer for the last few weeks. Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way Continue Reading
Third Installment – Katniss
Photo by Eric Guttierrez
Doctor and school updates
We went to see her neurologist last week. I keep thinking doctors are for making your kids better. But Rett doctors are not. They’re for making sure your kid doesn’t get worse. It’s a bit of a change for someone Continue Reading
Ragnar Recap, San Diego
My friend Nick and I drove a van for 26 hours for the Ragnar relay race that took a team of six women from Huntington Beach to San Diego – 182 miles. Each mile was dedicated to a girl with Continue Reading
Second installment – Annie Oakley
Here’s the second installment of Jenny’s art concept with photo by Eric Guttierrez and photoshopping by me. My dad suggested I make a calendar of these and sell them to raise money for Rett. But, he’d be one Continue Reading
#dance4Rett
This is embarrassing to post, but it’d be more embarrassing to do nothing. Rettsyndrome.org is launching a campaign to get people involved – Here’s all they ask – Film your favorite dance. Upload it to Youtube or Vimeo. Share it Continue Reading
