Medical Mystery

My daughter has an assembly at school where they learned about a disease. Unfortunately she cannot tell me what the disease was. The only thing she can recall are:

--this disease is fatal by age 12 or 13

--this disease makes you bald

--they're supposed to collect pennies to contribute to the research for this disease

--she thinks this is a disease that you are born with

--she thinks the disease starts with G

So in summary I have absolutely no idea what disease this is. She says she's bringing home a pamphlet. Any thoughts?