Human practices are always an essential part of iGEM, our team reached out to different communities and discovered that one girl in our school has a sister with Nonketotic Hyperglycinemia. By reaching out to 2022 NKH Conference, we will have the opportunity to present our project to the patients, their families, and the researchers working on the disease.
We have begun the human practice cycle since the iGEM 2021 Competition ended. We worked on establishing a team that is diverse in many aspects, including age, sex, origin, and race. Our team is mainly divided into two groups. One group is located in Gastonia, North Carolina, within the United States; the other is in Shanghai, China. The US group consisted of people from rising 9th grade to rising first-year students in college. Some of them are from China, and the others are US citizens. The China group comprises all juniors and seniors, but it is always a meaningful process to incorporate people from different cultures within a group. Learning opinions from distinct groups of people who built up their perspectives differently is a crucial part of ensuring that all people accept our project and its ideas.
Our project aims at making a product that can help Nonketotic Hyperglycinemia (NKH) patients have a more convenient life. We first thought about this project when we looked into the community and figured that one girl in our school has a sister with this disease. Then we talked with her parents and figured out that they are really open-minded, actively participating in related research, and working to help scientists know more about the disease. We also realized that there are more things the society can do for NKH patients, and we can certainly try to help them with scientific ideas within the iGEM community. Thus, we collectively decided to shift our project from our previous plan of modifying yeast to detect lithium in the drinking water source to the project that we are doing right now that focuses on NKH.
As we dive deeper into research about NKH, we find that the current treatments are not designed perfectly, and each treatment has its inconveniences or side effects. Thus we developed a plan for improving the medication based on papers we found and talked with the affected family to see if the plan seemed reasonable and appropriate.
Throughout the process of our project, we keep delivering ideas and information about it to the people around us. From other teachers and students at Gaston Day School to our team members’ parents, many people were amazed by our ideas and showed their support and approval of our project.
Later as we kept looking for outreach opportunities, we discovered that an academic conference about Nonketotic Hyperglycinemia will take place in Boston in mid-October. This event would allow us to present our project to our proposed end users and discuss it with the affected families and other researchers directly as sources of advice. Student members got interested in attending and later wanted to present our project during the conference, starting the application process. We communicated with the host -- NKH Crusaders -- and got their opinions throughout our research operation and the application process. Our team members got more enthusiastic once the NKH Crusaders accepted our application, which indicates that our concept is novel and promising. We understand that mid-October is a busy time for all the student members, and leaving school to attend the conference will disrupt the wet lab part of iGEM and the in-class learning process. Yet many members came to the compromise of attending the conference. The information we will receive during the conference will help us ensure that our design is something the affected families desire and thus close the loop between what was designed and what was desired.