A Full-Circle Moment at the NF Summit: Eunice Lee’s NF Journey of Resilience and Connection

[Link]Eunice Lee is a dedicated advocate living with NF1 and co-chair of the Children's Tumor Foundation Junior Board. Her journey has included major health challenges, including brain surgery for moyamoya disease and a diagnosis of MPNST.

At this year's NF Summit, Eunice had a powerful, full-circle moment when she ran into the doctor from Korea who helped save her life. That unexpected encounter sparked the reflection below-a story about resilience, connection, and the impact of finding community.

Last year was my first time attending the NF Summit. It was a pivotal experience that sparked my journey into volunteering and advocacy, especially since I was thrown into the NF world as a young adult.

I was diagnosed with NF1 at age 7 after noticing purple spots on my arm, which I learned were neurofibromas. Growing up without major symptoms, I didn't have regular NF check-ups. I also grew up moving around several countries every few years, which made it difficult to have a consistent care team.

At 19, just weeks into my sophomore year of college in Seattle, I saw a geneticist to establish an NF care team and get baselines. One specialist led to another, and within weeks, I was diagnosed with moyamoya disease - a rare NF1 symptom where the arteries in the brain narrow. I was at high risk for strokes and needed brain surgery immediately. To my surprise, the neurologist suggested I go to Korea for the surgery (to me, that was more surprising than the diagnosis). The neurologist explained that there were more moyamoya specialists in Korea and that my insurance would cover a greater portion of the costs. Before I could fully process what was happening, I withdrew from college and flew from Seattle to Seoul. Within a month, I saw specialists, and neurosurgeons performed an artery bypass on my brain.

I was hopeful for my five-year follow-up appointment at Asan Medical Center in Seoul, but disappointed to learn I needed neurofibromas removed. That surgery led to a Malignant Peripheral Nerve Sheath Tumor (MPNST) diagnosis, and my care team rushed to do further imaging. I was extremely fortunate that my doctor found the MPNST when he did, as the surgery fully removed the tumor, and the cancer hadn't spread. After recovering, I moved to Los Angeles for work and continued my NF care through the UCLA NF Clinic.

Since the surgeries, I knew I wanted to make a difference in the NF community and help others. Attending the NF Summit last year through the B the Difference Scholarship and connecting with the NF community inspired me further. I now serve on the Southern California Shine a Light Walk Committee, the CTF Volunteer Leadership Council, REINS, and am co-chair of the CTF Junior Board. This year, I served on the NF Summit Planning Committee and had the opportunity to lead and speak on the panel "Independence, Empowerment, and Transitions: Navigating Adulthood with NF." Beyond the Summit sessions, I met with medical professionals to work on an exciting project.

On both occasions, I've left the Summit filled with a mix of emotions. The community comes together for just three days each year, and there's a tangible energy in the bustling hallways. We reconnect with old friends, meet people we've known online, and form bonds with new friends. For those few days, we share space and stories, something that's sadly uncommon outside of Summit. There's an unexplainable connection with the people you meet; whether we bond over shared hardship or goals, there's a strong sense of understanding and belonging. But all too soon, those three days pass by, and it's time to say goodbye.

While in the hotel lobby on the final day, I happened to see Dr. Beom Hee Lee, my NF doctor, who had found my MPNST in Korea. I hadn't seen him in about four years. We caught up briefly, and I got to share the leadership work I've been doing in the NF community. It was a surreal and full-circle moment.

This year's Summit gave me so many opportunities to grow in leadership and advocacy. It also gave me the chance to reconnect with the doctor who changed the trajectory of my life, and I got to share that sentiment with him. In that moment, I was reminded of just how impactful the NF Summits and Conferences are and how special those moments are. They bring together a community of individuals who are affected by or care about finding a cure for NF. The Summits empower those living with NF, and I am hopeful the Conferences are just as powerful for the researchers and clinicians working toward better treatments and cures.

Though the challenges of NF are real, the resilience of the community and the progress in research give me hope. The Summit reminded me just how powerful our community is, and I'm already looking forward to the next one.