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
Ragnar Race
This Friday I’m participating in the Ragnar Race. That’s an overnight team relay running race. A team of women run 180 miles in honor of 180 girls with Rett Syndrome. There are other teams, but, that’s the team I’m on. Continue Reading
Art Project
Jenny had this idea about showing off Maggie as a strong woman, so we had our friend Eric Guttierez (fka Mav, fka the funky blessed) come over and take some photos. Here’s a picture from that day – this is Continue Reading
More FUNdraising
I produced a show last weekend called First Act to raise money for Rett Syndrome research. A bunch of comedians came and performed old dated jokes they don’t get to tell anymore. Basically, the thought was that with Rett Syndrome, girls Continue Reading
YouTube
Hello family and friends. I’m not sure you knew about this, but I’ve been keeping a video log of Maggie’s progress as well, a vlog if you will. I put up videos of amazing things she’s doing and talk about Continue Reading
Frozen
Frozen has been a bit of a touchstone for us. When it came out and little girls around the world flipped over it, Maggie didn’t care. She’s never been able to sit still for long enough to enjoy a movie and Continue Reading
Back to normal
For the last two months I’ve been back at work which is to say I haven’t been around that much for Maggie. I’ve missed dinners and breakfasts and therapies and school drop offs. I feel like she’s growing up so Continue Reading
FDA Update
Over the past couple of months we have been holding our breaths as results from the FDA trail of a drug formerly known as NNZ-2566 were coming out. This is the drug closest to market for Rett Syndrome and would Continue Reading
“Go Potty”
We had been potty training when Maggie started going through regression. We hadn’t made it to wearing panties but she was understanding the concept. After we were diagnosed, we kept sitting Maggie on the potty. With everything else happening with Continue Reading
