My daughter was born January 2011 with a rare Syndrome known as Sturge Weber Syndrome. Sturge Weber only effects 1 in 200,000 births. So imagine being told your child has a rare syndrome that when u tell others they ask you to repeat it . Most medical professionals have not even heard of it. So when I found this organizations it was a life saver it contects me to other families, it provides me with a voice, it lets me know im not the only one out there facing this. The foundation has provides me with extremely helpful information and keeps me up to date on breackthroughs or testing being done to help cure this terrible syndrome.