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My Story.

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've spoken publicly at various conferences, congressional meetings, the Milken Institute, and the FDA about the need for the development of novel therapies for the treatment of antibiotic-resistant infections. I have been published in medical journals, I am a patient reviewer for BMJ journal, and on the board of directors of the US Adult CF Association, a CF non-profit committed to educating and supporting the CF community. I believe that understanding the patient experience is vital to healthcare companies, researchers, and initiatives and receiving this information through solution focused patient advocates facilitates both the disease community and all other stakeholders to advance medical progress together.​

Accomplishments 

  • 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

  • "This Lung Life" blog column on Cystic Fibrosis News Today

Appearances

  • 2020 FDA Rare Disease - Supporting the Future of Rare Disease Product Development - Perspectives on Individualized Therapies Panel 

  • 2019 Milken Institute Future of Health Summit - Race Against Resistance: Overcoming Antibiotic Market Failures Panel

  • 2020 Biotech Atelier - Chief Patient Officer Panel - The value of the Patient Experience