In 1991, after the diagnosis of Bill & Marlene Stern’s two-year-old daughter, they resolved to learn as much about RRP as possible. The two scoured medical literature to identify institutions and individuals with expertise in RRP. As parents, they recognized the need to find other families fighting this rare, chronic, and possibly fatal disease. In the absence of a formalized organizations to unite RRP patients and researchers, the RRPF was founded. What saved their family was finding other parents obsessively listening for their infants’ breathing, struggling to decide when to schedule surgery, walking down antiseptic hallways for surgery upon surgery, and helping their children navigate the sandbox with only a whisper.
What inspired Bill & Marlene was finding clinicans/researchers dedicating their lives to understanding and eradicating RRP. They were fortunate to have another RRP family join them in their journey as they worked to build the RRPF, Henry and Susan Woo, whose daughter was a RRP patient. Their daughter went on to become a MD who planned to focus on RRP, and sadly at the age of 31, Jennifer passed away due to complications arising from pulmonary RRP (RRPF President at the time of her passing).