I am passionate about amplifying the patient voice in healthcare.
Having a background in biology, I've experienced both sides of the research spectrum - as a patient and a scientist. Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thrive in the lungs of those with CF, my work in the lab intersected with my health. This fueled my interest in involving myself in a research capacity on committees and advisory roles with organizations providing a patient perspective and promoting patient centricity. Simultaneously I developed my passion for writing, sharing my research experiences and introspectively writing about life with a chronic disease.
When I became very ill in the winter of 2019 with an exacerbation of the bacteria in my lungs due to CF, these experiences and interactions with researchers gave me the confidence to leverage my voice – and pursue an experimental treatment called phage therapy. I sought out and coordinated my treatment directly with researchers at Yale University. Being one of a few patients in the US who had tried this therapy, my experience was documented by the Associated Press. Because of the success of my treatment, I wanted to share about my experience to increase visibility for a viable alternative for other patients facing drug resistant infections. The exposure provided a platform from which I established myself as a patient advocate, publishing my experience, empowering other patients also battling infection, and inspiring the research community in further pursuit of phage research.
Since then, I have spoken publicly at various conferences, congressional meetings, to pharmaceutical companies, and to the FDA about the need for the development of novel therapies for the treatment of these antibiotic-resistant infections that thrive not only in my lungs, but which are becoming a significant global problem. Most recently, my patient journey battling antibiotic resistant infections was featured in a documentary titled the Silent Pandemic which brings to light the efforts from scientists and private initiatives around the world networking, forming alliances, and strategies to counter the advance of antibiotic resistance. I have been published in medical journals, including being a patient reviewer for BMJ and Pulmonary Therapy Journal, and serve on committees tasked in optimizing clinical trial protocols and research prioritization grant committees with the CF Foundation. I believe that understanding the patient experience is vital to both healthcare companies researchers, and the collaboration with solution focused patient advocates facilitates both the disease community and all other stakeholders to advance medical progress together.
Co-Chair and Keynote speaker of inaugural Cystic Fibrosis ResearchCon 2019
2019 and 2020 CF Ambassador - Virginia Cystic Fibrosis Chapter
2019 CF Star Award - Virginia Cystic Fibrosis Chapter
2022 Health Union Social Health Award Winner - Healthcare Collaborator
2020 FDA Rare Disease - Supporting the Future of Rare Disease Product Development
2019 Milken Institute Future of Health Summit - Race Against Resistance
Reuters Events, Financial Times, BBC StoryWorks, PM360, Evolution Summit, and more