Bethany Huinker

2^nd year MS Epidemiology

“From a young age, I have been driven by a passion to seek out answers and understand the complexities of health. Yet, growing up with a rare neurological condition meant that many of the answers I sought were unavailable. Living with a disease that few people have heard of—and even fewer study—inspired both a curiosity and a sense of urgency in me. My personal experience with a rare neurological condition called Hereditary Spastic Paraplegia (HSP) ultimately sparked my journey into epidemiology and my commitment to advancing research for conditions that are often overlooked in science.

HSP is a genetic disorder marked by increasing stiffness and weakness in the leg muscles. Its progression and severity vary widely and often leads to significant mobility challenges. Like many individuals with rare conditions, I’ve experienced the frustration of unanswered medical questions. With around two in 100,000 people affected globally, HSP is underrepresented in research and remains without a definitive cure or consistent treatment options.

Growing up with HSP, I not only encountered physical challenges but also realized how important it is for all populations—including those with rare conditions—to have a place in scientific research. This need for inclusivity has inspired my academic and career path in epidemiology, with a focus on neurological research. I’m now working in clinical trials for pediatric patients with neuromuscular conditions, where I feel I have found my calling. There’s immense purpose in knowing that my work might help other families, individuals, and children facing similar uncertainties.

Through my research and clinical work, I aim to help fill the knowledge gaps that once frustrated me and bring greater visibility and understanding to rare diseases. I believe that by advancing the science behind these conditions, we’re laying the groundwork for a future where all patients have access to the answers and care they need, no matter how rare their diagnosis.”