http://www.norwichbulletin.com/carousel/x267283338/Only-5-children-in-U-S-share-rare-disease-of-Danielson-boy This was an article written in the local newspaper that appeared in today's paper. My husband and I contacted them for National Rare Disease Day and they did an article to raise awareness. For a small town, I thought it was pretty good.

Interesting, thanks for sharing. Are the other children with CLS in the U.S? Have you had any contact with NIH? My daughter (KMiclon,age 41) participated in the NIH study of CLS last fall.