My Research on Tay Sachs

Just a little note before we get started: this post is not about archaeology/anthropology, it’s about another area of science I’m interested in. I want to use this blog to explore all of my different scientific interests, so don’t be surprised if there are some more posts coming along that aren’t directly anthropology/archaeology related!

When my Genetics teacher told my class we were going to write a research paper on a genetic disorder, my mind instantly went to Tay Sachs Disease. Tay Sachs is a devastating genetic disease that affects children and ends almost certainly in death. Very heavy. So why did I want to do it? Because it has been extremely prevalent in the Ashkenazi Jewish community – my community. It was with an almost morbid curiosity – because I knew I would most likely be saddened by what I read – that I dove into research about this disease. It is an extremely tragic disease, but my research led me to interview Becky Benson, a mother of a child who had Tay Sachs and the Family Services Manager at the National Tay Sachs and Allied Diseases Association (NTSAD). My interview with her helped me learn a lot about the real life impact of Tay Sachs, and it also moved me almost to tears. Becky described the sheer devastation that this disease wreaks, tearing children away from the families they just joined a few years before, and the horror it is to watch your child waste away before your eyes. The experience of writing this paper and talking with Becky was a very influential one for me. I gained a new understanding of this disease that is so impactful in my community, and it also influenced me emotionally. Seeing the real impact of Tay Sachs on real people really developed my understanding of loss and love, and how love persists with loss, and because of this I am very grateful I got to go through this learning experience. On a slightly lighter note, writing this paper taught me a lot about how to write and research a scientific paper, which will definitely be useful in my future in the STEM field 🙂

P.S. After I finished my paper, I shared it with Becky, and NTSAD actually shared it on their family newsletter! Check it out here!