I found this link very informative. Many people are confused, even after they see specialists, because so little is known about pachygyria. This link provides alot of information about it. Many people don't know about the different levels of involvement, and this link explains them a bit. I used to belong to a yahoo group that closed down, but there was a girl who belonged to the group, and she had pachygyria. I found her to be a source of hope and inspiration. Her name is Sarah Dunion, and I'm working on getting in contact with her. She lives in the New England states somewhere, and she is an advocate for those with disabilities. I want to try to post some links of hers, and maybe see if she will come on board here.