What I Learned about Life through Volunteering

I thought “discovery” meant making a scientific breakthrough or solving a complex lab puzzle. And while my lab research experiences gave a sense of discovery, it wasn’t until I stepped out of the lab that I truly understood something beyond just scientific discovery.

At Taiwan Foundation for Rare Disorders, the first thing you would notice are people, who, on the surface seemed just like anyone else. However, volunteering there taught me that their stories reveal invisible rare disorders that affect their lives in drastic ways. One particular patient used to be a breakdancer; however, after being diagnosed with Multiple Sclerosis, he could no longer move as freely as he used to. But what struck me wasn't what he lost, rather, what he kept. His energy. His spirit. His passion to travel the world and experience life to the fullest, despite changes. Another patient, living with Mucopolysaccharidosis, struggled with some aspects that can be quite ordinary to us. But he never gave up on his passion for learning. He’s now pursuing a master’s degree, driven by a determination to pursue knowledge.

Their resilience and passion moved me, not only inspiring my own resilience but also redefining for me what science in a lab is for. Listening to their stories while volunteering made me realize that some hardships are often invisible and neglected by society. Take the instance of orphan drugs for rare disorders, it isn't about how these disorders cannot be alleviated, but how not enough resources are going towards research in this area due to costs far exceeding returns from solving immensely challenging yet niche medical problems. Whatever the cliche, I realized that the resource that is my privilege can be invested to create change for others.

I used to think the most important discoveries happened in labs, as I’ve already spent years in the lab doing experiments. Labs are important and rewarding work, but what gives meaning and purpose to that work, for me, is meeting the people that our science is trying to help. These human discoveries gave my research value and motivation, as I found purpose. I am now motivated to pursue projects that matter, especially for those whose conditions are often overlooked, just like rare disorders.

Written by TFRD Volunteer: Maxine Huang