We were first introduced to Kyle Wan, a 17 year old high school junior from northern California, through scientists that attended our Banbury Conference at the Cold Spring Harbor Laboratory back in October. They spoke with genuine admiration and respect for the remarkable teenager who is determined to make NF more understandable for families like his own.
Kyle's mission for his platform is simple, NF Simplified is dedicated to making scientific research more accessible and understandable for individuals and families affected by NF1, NF2 and schwannamatosis.
"We believe everyone deserves access to clear, reliable information about the latest advances in NF research. By sharing simplified and accurate summaries of scientific findings, we aim to empower the NF community to make informed decisions, stay updated on medical progress, and feel connected to the breakthroughs shaping their care."
We have been fortunate to connect with Kyle in between his very busy days consisting of school and running his website and platform, NF Simplified. Our Penny's Flight high school and college chapters also had an opportunity to learn all about what Kyle has created on our Winter All Chapter Zoom call where Kyle introduced them all to NF Simplified.
Be prepared to be INSPIRED!
What is your connection to NF? What inspired you to start NF Simplified and tell us about the platform?
I have an uncle who has NF, and since he had trouble understanding all the medical jargon, I decided to create a tool to assist him. Eventually, through lots of iteration, user testing, and feedback, Dr. Vanessa Merker and I arrived at NF Simplified, a platform that combines both LLM (large language model) simplification with human-expert verification to bring understandable, accessible, and reliable information to NF families and patients.
What are your short term and long term goals with NF Simplified?
Short term, we're hoping to reach out to more experts to add their research, and we're seeking funding from various organizations to implement accessibility features to help the patient community. We hope that NF Simplified will become a reliable resource for people both within the NF community, and friends outside of the community as well.
What gap did you see in the NF community that you wanted to fill?
There is so much research being done in the NF community. I had the pleasure of attending and postering at both the patient and researcher sides of the CTF conference, but I noticed that not many patients attended the research side. For good reason, research done by experts is often super complicated, which paves the way for progress, but leaves patients like my uncle with an out-of-date understanding of the progress that is being made. I wanted a way to bring novel research to patients in an understandable but also efficient way.
How would you describe NF Simplified's mission in one sentence?
NF Simplified seeks to bring understandable, accessible, and reliable information to the NF community.
What has been the most meaningful feedback or story that you have received since you launched? Who inspires you in the NF community?
Hearing stories from patients and families who also struggle with keeping up with ongoing research has been the most inspiring to me. We wouldn't be doing this without the support of all of you at Penny's Flight Foundation.
In what ways do you see NF Simplified partnering with foundations like PFF to amplify awareness?
We hope to partner with foundations like PFF to spread the awareness of existing resources for the NF community, through links, announcements, word of mouth, and more!
Tell us a few fun facts about yourself.
I enjoy archery in my free time, a pretty unusual sport!
I love to read "classics" in literature, and I'm hoping that one day I'll be able to read Don Quixote in its original language.
Kyle presenting on our All Chapter Call on 12/7