“I completed the surveys because I want to find a cure. With so few patients diagnosed, we need every bit of data to help researchers learn what causes the tumors, what the disease progression is, and what treatments are effective. We all hear anecdotal stories from other patients, but until we pool the data in a consistent way, little can be learned of how best to treat those diagnosed after us and find a cure. The surveys are easy to complete and the benefit to finding a cure is enormous! There are no right or wrong answers, only your answers, your experiences, to share with researchers. Sharing our story is the unique contribution we as patients can make toward a cure.”