TYLER

Tyler Parsons: A patient, a researcher, and a voice for progress 

Tyler Parsons, PhD’s journey with myeloproliferative neoplasms (MPN) is not just personal — it’s a mission to bridge the gap between patient experience and scientific discovery. “I understand where the MPN patients are coming from. I’ve lived it,” says the young post doctorate research fellow.  

As both an MPN patient and a researcher, Tyler draws from his lived experience to push for patient-centered studies and data-driven treatment decisions in essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). 

Tyler’s passion for biomedical research predated his diagnosis, but his personal experience with PV imbues his work with earnestness. His first thrombotic event occurred at 17 and persisted through college without explanation. In 2020, he developed a portal vein clot and tested positive for the JAK2 mutation. “I was actually interviewing for postdoctoral fellowships at the time… I had to make decisions about my future with that in mind,” he recalls. 

Seeking specialized care at the University of Michigan, he underwent a bone marrow biopsy and finally received a definitive diagnosis of PV. This pivotal moment gave new meaning to his career, leading him to focus on MPN studies. Today, he is a postdoctoral fellow at Washington University in St. Louis and dedicated to advancing MPN research. 

As a patient, Tyler began with a key advantage: “I have almost unlimited access to the science and the data. While I 100% agree with patients that [research studies] need to be clear and in layman’s terms, I don’t necessarily have to wait for that to happen.” This deep connection to research not only helped him understand his condition but also enabled him to advocate for more patient-centered approaches in MPN studies. “In academic medicine or biomedical research, having that dual perspective changes how I approach things.” 

“Being in the healthcare field and having experience with treatment decisions made me think differently about what I was being prescribed.” He knew the importance of pushing for answers, asking the right questions, and ensuring that his treatment aligned with the latest scientific findings. 

Yet it’s Tyler’s dedication — not just his curriculum vitae — that makes him stand out as a member of MPN Research Foundation’s Patient Impact Council (PIC). “As a young MPN patient and a leader within the PIC,” says Sara Douglas, director of patient engagement at the MPN Research Foundation, “Tyler brings a unique and invaluable perspective to the community. His ability to translate complex scientific advancements into clear, accessible information has empowered countless patients to better understand their disease and treatment options.”  

By bridging this gap, he empowers MPN patients while advancing research. “What MPN Research Foundation has done is they have allowed the most involved members of the [MPN patient advocate] community a peek behind the curtain on the scientific process and what’s on the edge right now,” Tyler says of the unique collaborative program. “Those advocates are then able to go back and perhaps point their communities in the right direction. That’s a success.” 

Tyler confesses that he loves acting as a liaise between the two sides of medical advancement. “I understand the fear of not knowing answers,” he says. “I also am a scientist, and I am doing MPN research every single day. That has really helped me put my research into layman’s terms.” 

Tyler Parsons exemplifies the intersection of patient experience and scientific research. By championing patient voices in MPN studies, he helps shape the future of treatment and empowers others to take charge of their care. His story is a testament to resilience, knowledge, and the impact of patient-led innovation.