So, you may be thinking to yourself, what the hell kind of name is Heckenlively and what sort of man could be its carrier, so to speak. When I heard the name, I knew I would never forget it…..it is hardly an unforgettable name. I pictured a man with a jovial disposition, kind and of course a total genius who was going to give me hope of a cure for my rare and unique disease. I imagined him a bit portly in stature with gentle hands and a slow easy voice. He would exude warmth and compassion. He would spend time with me, explaining the intricacies of RP and comforting me in my time of distress; or maybe he would tell me I didn’t have it, maybe he would tell me it had all been a big mistake.