amplifying the patient voice and gathering insights to advance research and healthcare.

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.

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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. 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 in the importance of engaging patients to be active participants in healthcare by 

empowering and educating them to collaborate with stakeholders to improve disease outcomes and contribute to clinical trial development,  research committees, and in developing patient engagement initiatives so that together, we advance medical progress. 

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