About a month ago, I received an invitation to attend a “Patient Day” reception hosted by Dr. Emil Kakkis, CEO of Ultragenyx. Ultragenyx is the biotech company that is currently in phase II of a clinical trial for a potential treatment to slow the progression of HIBM. Dr. Kakkis was throwing a party to celebrate the patients of the various genetic diseases he has helped treat over the years and to honor his incredible staff. He was also going to be dedicating conference rooms named in honor of patients. I was told there was one named after me. I hesitated at first as I am always a bit protective of my emotional reaction when spotlighted in the patient role, but I decided to go for it.