Rare Leader: Kim McClellan, President, Recurrent Respiratory Palillomatosis Foundation

The Basics
Name: Kim McClellan

Title: President

Organization: Recurrent Respiratory Papillomatosis Foundation

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Disease focus: Recurrent Respiratory Papillomatosis (RRP) is a rare disease that is characterized by the growth of tumors in the respiratory tract caused by the human papilloma virus (HPV). Although they primarily occur in the larynx on and around the vocal cords, these growths may spread downward and affect the trachea, bronchi, and the lungs. It is sometimes referred to as laryngeal papillomatosis, tracheal papillomatosis, glottal papillomatosis, as well as AORRP/JORRP, and in the past was often called juvenile laryngeal papillomatosis, because it was thought to primarily affect only children. There is no cure, and currently there are no FDA approved pharmaceuticals to treat RRP. The only approved treatment for RRP is surgical intervention, which can often mean hundreds of surgical interventions for patients over their lifetime.

Headquarters: Lawrenceville, New Jersey

How did you become involved in rare disease: In 1971 at age five, I was diagnosed with RRP. At that time treatment consisted of repeated surgical removal of papilloma leaving me voiceless, in and out of surgery every couple of weeks, and ultimately with pulmonary involvement and a permanent tracheostomy. In 2021, 50 years and 250 surgeries later, standard treatment for children with RRP is essentially identical. Forcing science to change outcomes, improving patient quality of life, and giving JORRP patients a better future is my reason for leading the RRPF. I recently watched Eden’s story, and saw history repeating itself. Eden’s experience should not be my experience, my parent’s grief and anguish should not afflict this next generation of caretakers; medicine can do better-but yet it has not. It is the voice of the patient, our whisper-voices amplified by community that will hasten the progress of science, focus research on patient outcomes, and drive improvements in care. This is why I am dedicated to establishing a patient led research network that will enable us to translate the increasing body of scientific knowledge into results for our patients and ensure that the voice of our community is heard forevermore.

Previous career: I left the workforce in 1995 to be a full-time Mom. Outside of the role I currently have with the RRPF, my greatest career is being a Mimi to four perfect grandchildren.

Education: B.S. in Health with an emphasis on advocacy from Western Governors University

The Organization
Organization’s mission: The Recurrent Respiratory Foundation is on a mission to find a cure and ultimately eradicate RRP, so that it becomes a disease of the past. On our journey to find a cure, we will be funding promising research proposals, spreading awareness of RRP, and supporting patients and caregivers on their RRP journey. With our voices united, we can and will work to end the burden of this disease on patients and caregivers.

Organization’s strategy: To deliver on our mission regarding research, patient support, and awareness, the RRPF takes our goal(s) and then creates workflows in reverse. We can’t get where we are going if we haven’t identified our priorities/goals. Our goal is to constantly be moving towards the goals that matter to our patients and our expert clinicians.

Funding strategy: In years past, we have relied on individual donors to fund our advocacy work, as well as small seed grants to promising projects. Over the past two years, we have increased our capacity with a new Donor Engagement role, as well as worked to find grants that will help support the work that we do. The CZI Rare as One award will allow us to continue to build capacity, hire key roles, and will help us create the collaborative research network RRP so desperately needs, which we hope will include a formal RRP Tissue Bank as well as designation of Surgical Centers of Excellence and Research Centers of Excellence.

What’s changing at your organization in the next year: RRP data is variable in quality, dispersed amongst institutions and hard to access. Utilization and participation in patient registry must be increased, especially amongst JORRP patients who have difficulty accessing extensive medical records from childhood. Lack of distinct ICD-codes for RRP/pulmonary and no central catalogue for published research make retrospective studies difficult. Tissue banks are disparate and often set up according to narrow research parameters and limited funding. Lack of established surgical/research centers of excellence impedes the development of protocols for the use for adjuvant medicines and prevention/treatment guidelines for pulmonary RRP. 2022 will be a pivotal year in the history of the RRPF as we work to hire an Advancement Advisor, a Research Coordinator, as well as grow our leadership team to better serve our patients and our clinicians and our researchers, all of which will help us close the gaps we have currently for RRP care and research. It is our hope that 2022 will be the year we can give our community a date on the dream of non-surgical treatment for RRP, as well as the cure we all dream of.

Management Style
Management philosophy: Admit what you don’t know. Ask those that do know. Understand that sometimes not knowing is your biggest asset to forward progress. Learn the gifts of those who wish to lead and find a role that uses those gifts to bring purpose to their journey as a RRP patient/caregiver. Coursera is your friend.

Guiding principles for running an effective organization: What worked yesterday may not work today. Be willing to change, be willing to be a leader with their hands facing up, open. One person cannot run an organization and finding a team that works well together is paramount to forward progress. 

Best way to keep your organization relevant: Within any rare disease community, you will find patients/caregivers with passion. Find a way to use that passion and enthusiasm to keep your leadership team engaged, willing to change, and willing to admit when a plan needs to be abandoned. Young leadership can be one of our greatest assets—use it.

Why people like working with you: Well, I hope they like working with me. I hope that the why is because I always work to make it evident that none of the work is about “me.” It’s about “we.”

Mentor: Every rare disease organization leader. Everything I know regarding effective patient advocacy and patient-centric care/research is from interactions with other rare leaders, as well as the education offered by Global Genes and NORD. 

On the Job
What inspires you: Seeing the impact of the HPV vaccine on new incidence rates of Juvenile Onset RRP inspires me to work harder on the “why” the HPV vaccine should be part of every family’s vaccination plan. The general public can actually be a part of eradicating RRP—will it be two or three generations from now, we don’t know, but we do know it is possible. Knowing we could one day close as an organization because RRP is a disease of the past is what inspires the work today.

What makes you hopeful: For the RRP community, so much of the science behind the COVID vaccines could lead to progress towards non-surgical treatment options for our community—that gives me hope. Seeing two clinical trials taking place today using a potential therapeutic vaccine brings me hope. The rapid pace of personalized medicine brings me hope.

Best organization decision: Creating a RRP Patient Registry that is IRB reviewed, HIPAA/GDPR compliant. Our goal is to create a true “diagnosis to death” disease history, as well as create standard of care rubrics based on clinical research on the differences between HPV 11 and HPV 6 in the RRP patient.

Hardest lesson learned: For our organization, I don’t think it was much as a lesson learned, but probably the hardest thing we have walked through since inception. Jennifer Woo, a rising MD who was also a RRP patient with pulmonary spread, was named president several years ago. Sadly, at the age of 31, she succumbed to the complications of pulmonary RRP. The sudden loss of Jennifer led to a period of uncertainty for the organization, as our founders had looked to her as the new leadership to take the foundation forward. Her loss is still felt even today. It is her loss, and the loss of every pulmonary RRP patient, that inspires our work in pulmonary RRP, our highest area of mortality.

Toughest organization decision: For any organization, those times you have to give pause to a goal so that another goal can be achieved is hard. Our most recent pause came in tabling our secure Kids Zone project until we are better equipped to manage such a tool. With our projected 2022 projects, this goal will happen as our infrastructure has expanded and our bandwidth increased.

Biggest missed opportunity: I decided this question was one that was best answered by the founder of the RRPF and former president. “Not recognizing the need to recruit a person with fundraising expertise early on to support the RRPF’s efforts to encourage and fund more promising RRP research.” I’m thankful that the Chan Zuckerberg Initiative Rare As One award will allow us to make this key hire.

Like best about the job: Seeing the impact the patient voice can make in research and clinical guidelines.

Like least about the job: The days you, as a leader, feel the weight of the community on your shoulders. 

Pet peeve: Being late

First choice for a new career: I keep looking for ways to make being a beach bum a viable career option. The beach is where so many of us with RRP breathe the freest, so to be there 365 days a year would be a dream come true.

Personal Taste
Most influential book: When Breathe Becomes Air by Paul Kalanithi, as well as Chasing My Cure by David Fajgenbaum. Both are instrumental in my mindset of the patient having the greatest power when it comes to their own disease journey, and both gave real world actions that so many of us in rare disease can apply to our own disease.

Favorite movie: Sweet Home Alabama

Favorite music: Christmas Music

Favorite food: Tex-Mex

Guilty pleasure: Ice Cream

Favorite way to spend free time: Sitting in our sunroom with a blanket and a good movie.