My name is Hannah Kim, and I am a consumer reviewer for the Neurofibromatosis Research Program (NFRP). I was diagnosed with Neurofibromatosis (NF) in 1998 at the age of two. I have multiple NF1-related manifestations, but peripheral nerve sheath tumors (PNSTs) have had a significant and negative impact on my life. As part of my health care, I am currently enrolled in a mitogen-activated protein kinase (MEK) therapeutic clinical trial for my PNSTs. When I am not volunteering my time to support NF families, I currently work as a scribe for an ophthalmology practice and am preparing to apply for medical school. In my free time, I enjoy spending time with my friends and family, going on walks, and hiking, cooking, and listening to podcasts.
I first heard about the NFRP and some of the research they supported through my internship with the Children's Tumor Foundation in the summer of 2017 towards the end of my sophomore year in college. However, I fully came to understand how the NFRP and Congressionally Directed Medical Research Programs support NF-related research through the NF Young Adult Leadership Conference after college in 2020. I think the commitment of the scientific community to NF is definitely patient-centered, forward-thinking research.
Currently, I am volunteering with the Littlest Tumor Foundation (LTF) and helping to plan the Young Adult International Summit. I enjoy working with the LTF because we support and empower families to become leaders and help develop an awareness of NF through community and outreach events. I was excited to be nominated last year by the LTF to be a consumer reviewer. Prior to starting a full-time job, I was more heavily involved in research projects focused on well-being topics and strength-based advocacy programming. I think the nomination and screening were streamlined, and I found it helpful as the staff walked me through the process. I really enjoyed reading and reviewing the applications. I was a bit surprised about how much work it must have taken to create these applications on their end. I think the most daunting part was speaking in front of the physicians/scientists because they're all so brilliant and well-spoken. I also felt a strong responsibility because I was representing the NF community and wanted to ensure I represented their needs well. I think the NFRP community is not afraid to take risks (high-risk), so that they can make the largest impact in the communities.
Serving as a reviewer on the NFRP panel has definitely further stimulated my interest and passion for medicine and science. I look forward to seeing new treatment options coming from the funded NF awards a few years from now.
Last updated Wednesday, January 12, 2022