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 what we’re going through as well – usually with her. You can check it out at[…]

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 it always felt like we were torturing her by trying to get her to watch[…]

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 be the first ever treatment of the actual disease.  Over the weekend, the FDA denied[…]