If I had to use three words to describe Beyond Batten Disease Foundation, I would use passionate, inspiring, and driven. The first time I heard about BBDF was at a volunteer fair hosted at The University of Texas where I had the opportunity to meet two representatives from the foundation. When I asked them to tell me a little bit about BBDF, I was immediately inspired by how passionate they were when talking about the children they had met, the foundation’s amazing accomplishments to date, and the goals for the future. After asking more about the science behind juvenile Batten disease, they prompted me to contact Dr. Danielle Kerkovich, Principal Scientist at BBDF, who offered me a science research internship position.
Throughout the internship, Dr. Kerkovich was my mentor and shared as much of her incredibly vast knowledge of juvenile Batten disease and the research field as she could with me. Through her guidance, I was able to gain a better understanding of the challenges faced by the children affected with the disease, their families, and the scientists working to find a cure. One of the main problems she presented to me was the amount of time it takes for children to be diagnosed with juvenile Batten disease and the devastating consequences resulting from a late diagnosis; whether they be medical, financial, or emotional. During my internship I worked on the early stages of a project designed to educate clinical experts and in turn decrease the diagnosis time. Though this was my main project, I also tackled smaller projects that enabled me explore the field of science writing.
Interning at BBDF has allowed me to dive into areas of research and medicine I had not previously explored. Every day, I learned something new, ranging from the diagnostic aspects of rare diseases to how new technology can contribute to the cause in unexpected ways. In addition, I have been fortunate enough to work alongside some of the most kind and passionate people I have ever met. It is with much enthusiasm that I look forward to continuing my work at BBDF to help fight the battle against juvenile Batten disease.