I have been exposed to the importance and power of patient advocacy since I was conscious. The first four years of my life were filled with mysterious illnesses, constant stays in the hospital, and a few brushes with death. During one of these hospital stays, my mom, at her wits end, reached for a small book in the hospital library – The Immune Deficiency Foundation’s Patient and Family Handbook, and my family’s nearly 30-year journey in patient advocacy began.
With that book in hand, my mom was able to share knowledge with my pediatrician, resulting in my diagnosis of a primary immune deficiency disorder (PIDD). I was put on intravenous immunoglobulin (IVIG) therapy and have lived a relatively normal life from then on. Subsequently, my maternal grandma, brother, and mom were also diagnosed with immune deficiencies.
In saving her children, my mom found a passion for helping others. She volunteered for close to a decade with the Immune Deficiency Foundation (IDF), hosting family retreats across the country where she would bring together patients, family members, and doctors for a weekend of education and fun. When I was old enough, I began volunteering with the kids who came to these retreats. I always remember my mom telling me, “Many of these kids live in a world of doctor visits, so it is your job to make sure that this weekend is nothing but fun.” I loved the feeling that I was able to make a direct, positive impact on children who were struggling.
After the family retreats outgrew the capabilities of our small but mighty volunteer team, and with a more formal structure in place, my mom went on to work as a professional patient advocate within the pharmaceutical industry for over 15 years.
As I transitioned from college into the professional world, I knew that replicating the feeling from the retreats would be critical to my fulfillment. My mom mentioned that she partnered with VOZ Advisors on patient advocacy projects, and after learning more about the consulting firm, I knew I needed to apply.
My time at VOZ has reinforced my passion for patients and care partners. There has never been a doubt in my mind that the people who know the most about an illness are the patients; they are the experts in their illness and should be respected and valued as such. I love that my job allows me to reaffirm that fact, day after day. I can be a relatively reserved person, but growing up with an advocate made it clear to me that there is nothing more important than being able to communicate about your health needs and priorities, and I am thrilled to be able to provide others with the support and space to do just that.
I feel incredibly lucky that my mom advocated on behalf of myself and my brother to ensure that we were healthy and happy. My gratitude has inspired me to make it my job to help others find support, have a voice, and know they are taken seriously. My mom happened upon a book that altered her path and my life; I know that the impact she made by being a life-long advocate has provided so many others with the tools to find their voices – and I know that my work with VOZ does as well.
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Learn more about Kinsey Moore on her bio page.
