Even if you never thought of yourself as a science nerd, it’s worthwhile for parents of children with rare diseases to become educated about the research and the drug development process (when you’re not attending to the thousand other things you need to learn to care for your child!).   Here are a couple of resources to help:

I pulled weeds today.  It's one of my least favorite things in the world to do, but the weather was beautiful and dry, and excuses were hard to find, so Erin and I headed out to the front yard.  One especially long one had been growing out of a planter all summer. Every time I came in or out of the front door, I growled at it and swore I'd get it next time.  Today was "next time."  He put up a good fight,  held on with roots seemingly made of super glue, but, in the end, he was no match for my superior brains and brawn.

“Excessive daytime sleepiness” (EDS) is one of those symptoms of PWS that tends not to get too much attention – although very common, it just doesn’t seem that serious.  However, EDS can profoundly undermine success in older children and adults with PWS.

Dr. Shawn McCandless and the Committee on Genetics at the American Academy of Pediatrics have just published "Clinical Report: Health Supervision for Children with Prader-Willi Syndrome" in the Journal of Pediatrics.  The article is available for download (free!) here: [McCandless, 2010].