While we breathe, we hope.

Our History

What began 30 years ago continues to be our life’s mission: to make information and hope possible for the patients and families living with RRP.

How it all started

In 1991, after our two-year-old daughter’s diagnosis, we resolved to learn as much about RRP as possible. We scoured medical literature to identify institutions and individuals with expertise in RRP. As parents, we recognized the need to find other families fighting this rare, chronic, and possibly fatal disease. In the absence of a formalized organization to unite RRP patients and researchers, the RRPF was founded. What saved our 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 us was finding clinicians/researchers dedicating their lives to understanding and eradicating RRP. We were fortunate to have another RRP family join us in this journey as we 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).

Our Founding Members

Bill Stern

Current RRPF Director of Research CFO RRPF Founder

Marlene Stern

RRPF Vice-President Emeritus RRPF Founder

Henry Woo

Former RRPF Secretary and Legal Adviser RRPF Founder

Susan Woo

Former RRPF Director and Pulmonary Task Force Member, RRPF Founder

In Memory of Jennifer Woo,
Former RRPF president

Jenn Woo earned an MD from Georgetown University and had planned to dedicate her career to finding a cure for RRP. She served as RRPF President from 2009 until her untimely death in October 2015.  Jenn was the inspiration for the RRPF pulmonary papilloma research initiative (long before she was diagnosed with pulmonary RRP).

Breaking News!!!

RRPF President, Kim McClellan to speak at the White House Rare Disease Forum

Tonight! February 28th @ 5:30PM EST