I was diagnosed in 2011 with Bardet Biedl Syndrome.  I have always struggled with my weight and my vision.  In 2017 I began a clinical trial through Marshfield Clinic with Dr. Bob Haws for a medication to help me curb my appetite.  Since then I have lost 135 pounds and continue to do well with setmelanotide which should be approved by the FDA soon so others can be helped.  My vision continues to degenerate so I am really hoping for a treatment to become available and that is why I am so passionate to raise money for research for BBS patients.