Hi My name is Lisa Schoyer
I am the past president of the Costello Syndrome Family Network, the American "chapter" of the International Costello Syndrome Support Group (ICSSG). My current roll is Chair of the Costello Syndrome Research Advisory Group..

I have two children, Quin who had CS (who died in 2002 from relapse of CS-related cancer when he was almost 7) and Turner, my healthy, "typical" daughter. I'm the medical information maven. I mostly know about all the medical stuff that Quin went through, and am learning from other parents about the other CS-related things that happen, like Chiari malformations, shunts, etc.