Blog Harvey A. Friedman Center for Aging Chronic Disease

Remembering the people behind the disease

Written by Sophia Tu, BS candidate at Saint Louis University and participant of the Institute for Public Health Summer Research Program

Sophia Tu (second from left) with her family at Phong Nha Cave, Vietnam, 2010

As I walked into the Institute of Public Health, I felt excitement in seeing my fellow cohorts in the Aging & Neurological Diseases Track and Summer Research Program directors in person for the first time. Although we had worked together the past summer through Zoom, I knew that experiencing the program in person would be completely different. Through the efforts of our amazing program coordinator, Natalie Galucia, I experienced diverse yet interconnected perspectives that the effects of aging and neurological diseases have on people and their families.

From a research perspective, I had the privilege of working with Celeste Karch, PhD, in her lab to study common molecular signatures between different MAPT mutations of Frontotemporal Dementia (FTD). I also researched FDA approved drugs that can be repurposed to treat FTD. Dr. Karch showed me that research helps create a narrative that can effectively tell the “story” uncovered by the data. Over the course of the summer, the idea of conducting research grew to be more than just numbers and graphs; it became a quest to find the missing pieces of the “story” behind the diseases we study. We start with asking the right questions, running relevant analyses, and discussing the implications of the results. I also learned that research is never an end-all-be-all process. Often, it is iterative, which requires trial and error, back and forth discussions, and revisions after revisions.

On the other hand, I also experienced specific stories in which aging and neurological diseases affected families from various circumstances. Notably, while I was moved to tears by the documentary “The Alzheimer’s Project: The Memory Loss Tapes,” I realized that although diseases like Alzheimer’s slowly take away the precious memories of a person’s experiences, the story of their life remains as a testament to who they are as a person. Through Audrey Keleman’s lecture “Home Modifications & Implications of Falls in Pre-clinical Alzheimer’s Disease,” I also realized the importance in the work that many researchers and clinicians do to help patients keep their autonomy as they recover at home. We also discussed how some home modifications looked too “medical” and many older adults would refuse the change. This goes to show how critical it is to not only consider patient autonomy, but also their dignity.

From all of the eye-opening, enriching discussions I shared with my cohorts, I am further reminded of the true reason I wanted to pursue research as well as medicine: The people. Even when working in a lab of petri dishes and pipettes, I learned how researchers attempt to translate the results into a human context. This summer experience further strengthens my belief that research will be an essential part of my path in medicine.