I’m very excited to join the National Kidney Foundation in the Advocacy Manager role as we begin an exciting new year for kidney policy. Coming from a patient advocacy and public health background, I was drawn to NKF by the organization’s commitment to elevating the patient voice and tackling historically neglected priorities like health disparities. I firmly believe that patient involvement in the policymaking process is of the utmost importance, and I am especially proud to be joining an organization where so many staff members have their own personal connection to our mission.
My passion for health policy and advocacy is drawn from my own experiences with the health care system. I began having chronic health issues as a pre-teen and embarked on a frustrating diagnostic journey that would take seven years and twelve specialists to unravel. I was ultimately diagnosed with a rare connective tissue disorder in 2017. Growing up I had always wanted to be a physician, but the more I was exposed to the American health care system, the more I realized that even the best physician in the world cannot help every patient if inadequate policy and systemic barriers prevent them from doing so. This led me to advocacy.
Building on State Successes
I am coming to NKF from the National Organization for Rare Disorders (NORD), where I have spent the past three years working in policy and patient advocacy. There I had the wonderful opportunity to work directly with patient and caregiver advocates to push legislation across the finish line in multiple states. I am particularly proud of a win in my home state of Virginia, where the legislature passed a bill to enact a Rare Disease Advisory Council (RDAC) last year.
During a hearing on the bill in the House of Delegates, I had the privilege to testify alongside a NORD volunteer leader. I’m excited to work with NKF advocates to pass similar legislation that will enact Chronic Kidney Disease task forces and help protect living donors in statehouses across the country.
While I do not personally understand the experience of living with CKD, I am intimately familiar with the challenges of navigating a health care system that is not built to provide the care that you need. I am eager to learn about your experiences and work together to address your needs. I have already been blown away by the CKD advocates I have had the opportunity to meet in my short time at NKF and I look forward to working with you all to advance meaningful change for the kidney community.