Elizabeth, Christian, and Caroline contribute to advancing scientific knowledge but also share powerful personal stories about how their diagnosis has shaped their paths as researchers.
Elizabeth Mercado-Ayon reflects on the transformative power of her diagnosis:
“As an undergraduate biology student, I had many goals that lacked clarity. In my junior year, I was diagnosed with Friedreich ataxia. Initially, this diagnosis caused much pain—as it was supposed to. Soon, I realized that my diagnosis clarified my landscape of perception in my studies and in my life. Friedreich ataxia oriented my goals, helping me envision a clear pathway toward becoming a researcher in a highly specialized field—one whose impact I could directly experience in my own life. Friedreich ataxia pathophysiology is very interesting and needs further exploration. In my FA research pathway, there are obstacles and facilitators. My most important facilitator is my mentor, David Lynch—he makes things possible. My interest in biology and life circumstances are intertwined for my destiny. And I value and am grateful for it.”
Dr. Caroline Spencer shares her personal growth through involvement in FA research:
“For me, being actively involved in FA research is a mark of personal growth. When I was first diagnosed, I didn’t even want to read anything about FA because it made me too depressed and scared of the future. After a few years, I realized there was such a need for education and research about the patient experience and that I could help with that. Now, instead of feeling scared, I feel excited to be part of such a collaborative scientific community and to be able to “pay it forward” so other patients have an easier time living with ataxia.”
Christian Maugee speaks about the impact of his research on both his life and the lives of others with FA:
“Every battle I fight against FA—whether it’s raising awareness, participating in research, or conducting experiments—brings us one step closer to a cure. I believe that, together, we will cure FA.”
Christian also has a powerful message for his research colleagues:
“What you do definitely impacts our lives. Thank you for those late nights in the lab, for going in on weekends, and for everything you do—even when it feels like progress is slow. Just know that your work adds hope to the world. For those of us with ataxia, although the future may be uncertain, it is hopeful. Thank you.”