Hi, I'm Qui! I'm 24, diagnosed with NF1, and attending this year's 2026 NF Summit in Denver, Colorado.I am also a participant in the Neurofibromatosis Young Adult Leadership program hosted by the Littlest Tumor Foundation.Purchase your tickets to the 2026 NF SummitWelcome to my NF1 Awareness page. Click around to explore my story, connect, or view resources.

Thank you to my supportersSpecial Thanks to:I want to thank the Littlest Tumor Foundation, Texas NF, and NF Midwest for their financial support and the opportunity to represent the State of Texas at the 2026 NF Young Adult Leadership Summit.B the Difference Foundation (via the B Happy Program) and anonymous donors for making my attendance at NF Summit 2024 possible through scholarships offered by the Children’s Tumor Foundation.Learn more about all these fine organizations below.
Littlest Tumor Foundation
Texas NF Foundation
NF Midwest
Children's Tumor Foundation
B the Difference Foundation

My NF1 Story

Hi, I'm Qui! It's nice to meet you!I was diagnosed when I was only two years old with genetic testing at Children's Medical Center.My journey started in 2001 when my parents noticed Cafe-Au-Lait-Spots (CALS) on my skin, which had increased in size and number. With their worry and vigilant eyes, my parents, unaware of what may have been the cause, took me to my pediatrician. Based on my pediatrician, I was referred to Children's Medical Center Dallas (now Children's Health) in the UT Southwestern Medical District in Dallas, Texas.Upon examination, I was referred to genetic testing further at Children's Medical Center to confirm the diagnosis of NF1. After the visit with the genetics team, they confirmed the diagnosis of NF1: I have a truncation or mutation of the type 1 gene.This started the many treatments and providers seen to screen and treat NF1. ---But that didn't end there. From 2009 to 2011, my parents got separated, and it was harder to find care for NF1, with my parents either forgetting about appointments or completely disregarding NF1 treatment. It wasn't until 2020 that I started advocating for myself with my healthcare as an adult and taking my health into my own hands.It did get slightly tricky to get care as in late 2023, the NF1 clinic at UT Southwestern was in disarray, with the primary provider for the Neurofibromatosis clinic leaving for another practice; I got the same message later regarding the Ophthalmology department entirely unable to accept new patients, and that the dermatology clinic was unsure of how to approach new NF patients.I've faced some challenges with my NF1. I was bullied in middle school, since I went to a magnet school for STEM, and was always the odd one out of the main demographics of the school. Some days, the bullying really put me down and I didn't want to do anything except go to my bed and sulk. This went to a point where I transferred to another school closer to home where I could be with friends I've known for a long time and I wasn't considered the outsider. This improved my self esteem and confidence going into high school.I am now being treated at UT Southwestern Medical Center with my partial care team, with upcoming appointments in the next three months with various providers within the UT System or outside of the UT System.

NF1 Resources

Contact Me!
I'll respond to your request as soon as I can, if you'd like to connect quicker please use the Whova connection features or connect with me on LinkedIn.

These times don't work?
Please create a meeting using my primary calendar page below.
You will be redirected to another Calendly web page.

Page not found
Sorry, the requested page could not be found.

Make NF Visible