Patient Advisory Board
These 6 RRPF warriors will help inform the work of the foundation, represent RRPF, and advocate on behalf of our community across the county.
My name is Brandi Allen and I help lead the Patient Advisory Council for the Recurrent Respiratory Papillomatosis Foundation. I’m a JORRP patient who was diagnosed at the age of 7 and underwent numerous surgeries until the age of 17. From the ages of 17 to 24 I was in a dormant phase of the disease that I thought was the end of the disease cycle. It wasn’t until I started noticing the familiar symptoms I had as a child, were now affecting me as an adult that I became aware the disease does in fact “come back”. My personal RRP journey will be highlighted through a featured video at the 2024 RRPF Roundtable. Beyond this disease I’m a devoted wife, mother, and active youth leader within my church. After years of hiding from a disease that has been part of my life since childhood, I’m now reclaiming the narrative and embracing my story.
My name is Lindsey Carr. I do not know life without this disease, as I was diagnosed around the age of two. There was always hope that I would outgrow the disease when I hit adolescence; however, that was not life's plan. In my almost 30 years of living with this disease, my treatment has migrated from surgeries in the operating room with a co2 laser and microdebrider, to awake procedures with the KTP laser and direct injections of bevacizumab, to my current system bevacizumab infusions.
I attended Salem College, where I double majored in Business Administration and Economics. During my time in school, I focused all of my economics research on healthcare. The research I did was personal, as I am, like all the other RRP patients, an individual with a pre-existing condition and an individual who has had to overcome many challenges in order to get the medical treatments I needed. My passion grew the more I learned and researched. I am currently a project manager and help run a small business. I am beyond thrilled to be involved with RRPF and am looking forward to helping spread awareness and advocating for RRP.
My name is Robert Sershon. My RRP journey began in 1990 while serving in the U.S. Army. My initial surgeries were performed in Landstuhl, Germany until I was transferred to Wilford Hall Medical Center in San Antonio. I was medically discharged in September 1991. My surgeries continued at the VA Medical Center in Oklahoma City until I was hired by the State of Oklahoma in August 1992. I then began having my surgeries performed by private ENT doctors. In the past 34 years, I have had over 100 surgeries performed on my vocal cords. In September of 2023, we moved to St. Augustine Florida, so that I could be treated at the Mayo Clinic. I am currently enrolled in a study where they will inject STEM cells into the scar tissue of my vocal cords and folds to see if it can help strengthen my voice, by healing the scar tissue.
I retired from the State of Oklahoma in 2019 and became the Director of Oklahoma Probation Services. I have over 30 years of experience in corrections, law enforcement, and working with the criminal justice system. I have written several articles on Sex Offender Supervision and have been a guest speaker at conferences and leadership academies regarding Sex Offender and Community GPS Supervision. During my career, I have held the positions of Probation Team Supervisor, Internal Affairs Investigator, Polygraph Examiner, and Probation Officer. What I enjoyed most about my career was mentoring officers and staff members in achieving their goals. I am a 1996 graduate of the University of Central Oklahoma with a Bachelor of Arts Degree/Criminal Justice. I am an avid OU fan and golfer. Robert and his beautiful wife, Shawna, have been married for over 19 years and reside in St. Augustine Florida.
I am excited about being selected as a member of the Patient Advisory Committee and hope that my experiences can help others with RRP be able to successfully manage the difficulties we constantly face in life, work and society.
I attended Salem College, where I double majored in Business Administration and Economics. During my time in school, I focused all of my economics research on healthcare. The research I did was personal, as I am, like all the other RRP patients, an individual with a pre-existing condition and an individual who has had to overcome many challenges in order to get the medical treatments I needed. My passion grew the more I learned and researched. I am currently a project manager and help run a small business. I am beyond thrilled to be involved with RRPF and am looking forward to helping spread awareness and advocating for RRP.
Jasity Rush, MPAS, PA-C is an urgent care physician assistant, advocate for RRP, and amember of the Patient Advisory Council. She received her Bachelor’s degree from Florida State University and a Master of Physician Assistant Studies degree from the University of Florida.
She was diagnosed with adult-onset RRP while in graduate school and it was suspected to be caused by healthcare exposure.
Jasity plans to provide a unique perspective to the RRPF Patient Advisory Council not only as a patient living with a rare condition but also as a healthcare provider.
My name is Tracie Koepplin and I was diagnosed with laryngeal papilloma’s at the age of 2, my childhood and adult life have been marked by over 400 surgeries to manage this challenging condition. Just a few years ago, I was recently diagnosed with respiratory papillomatosis.
For nine years, (Starting at the age of 4) I relied on a tracheotomy for breathing, a reality that made navigating daily life a challenge. Despite the constraints imposed by my tracheotomy, childhood joys like swimming and playing in the water became something I could only watch. Throughout my early school years, I had to wear a microphone to amplify my voice due to difficulties with vocalization until I was in the second grade.
An important turning point in my journey came with the introduction of CO2 laser treatment at Oregon Health & Science University (OHSU). As the first patient to undergo this procedure at OHSU in 1977, I had high hopes that it would finally allow me the dependency on the removal of my tracheotomy. However, when the laser arrived it was damaged. There was a three-year delay. Nevertheless, the laser was repaired and at the age of 13, I finally got my tracheotomy removed.
Refusing to let illness define my future and my voice, I turned my experiences into a passion for healthcare that led me to pursue further education. After completing nursing school and graduate studies, I am currently thriving in my role as a clinical manager. My journey has equipped me with a unique perspective and an unwavering commitment to improving patient care. In my current role, I strive to advocate for patients, foster a culture of compassion and excellence, and contribute to positive outcomes in healthcare delivery.
Beyond the clinical setting, I have actively engaged in advocacy and leadership roles. I have served as the president of a board of directors for an independent electronic medical records user group for the past seven years.
I am incredibly honored and excited to join the Patient Advisory Council of the Recurrent Respiratory Papillomatosis Foundation (RRPF)! Being welcomed into this esteemed group is a true privilege, and I am deeply grateful for the opportunity to contribute to the advocacy efforts and positive impact on the lives of RRP patients.
My name is Joey Blackburn, and I am a wife, mom, teacher - and person living with AORRP. Midway through my first year of teaching my voice got very hoarse. I chalked it up to how much I was using it, but after several weeks a friend pointed out that I may want to get it checked out.
I went to an ENT who thankfully immediately recognized that it was likely RRP, and who referred me to an otolaryngologist who would be able to make the diagnosis and treat me. Despite being told by my then-administrator that it was "just allergies", I took the day off and saw the specialist who diagnosed me with having RRP.
The situation was life changing in two ways: one, I discovered I had an incurable, chronic illness; and two, that I am my own best advocate. That lesson has helped me advocate for myself, and also helped me advocate for my students - and to teach them to advocate for themselves! I am excited to work with the RRPF Patient Advisory Council so I may continue to advocate for myself and everyone else who is living with this disease.
