This past weekend, I had the privilege of participating as a speaker at NYU Langone’s first Teen and Young Adult Brain and Spinal Cord Tumor Survivorship Event. While I was honored to share my own story during the patient experience panel, I left with a renewed appreciation for the power of connection, community, and survivorship.
The event brought together young patients ages 16 to 45, along with their families, spouses, and caregivers, for a day dedicated to learning, connection, and life beyond a brain or spinal cord tumor diagnosis. Throughout the day, I had the opportunity to hear from oncologists, therapists, psychologists, and other healthcare professionals who spoke about topics that don’t always receive enough attention. We discussed the long-term cognitive and physical effects of treatment, managing medications, regulating emotions, building independence, setting professional goals, family planning, and brain health.
One of the highlights for me was hearing Dr. Devorah Segal, my oncologist and an important member of my care team, speak during the program. Seeing her share her knowledge with so many survivors and families was incredibly meaningful and reminded me how fortunate I am to have such a thoughtful and dedicated team supporting me.
Although the educational sessions were outstanding, the most impactful part of the day was meeting other brain and spinal cord tumor survivors. Some had diagnoses very similar to mine, while others had completely different experiences. Yet the moment we started talking, there was an immediate understanding between us.
We spoke openly about medications, the lasting effects of treatment, school, careers, relationships, independence, and the challenges that continue long after treatment ends. These were conversations where no one had to explain why a certain feeling, fear, or challenge existed because everyone in the room already understood.
As I shared in my thank-you note to the NYU team:
“Sitting together, sharing our stories, and talking openly about how our diagnoses have shaped our lives was incredibly powerful. While each of our journeys has been different, there was an immediate understanding and connection that was both comforting and inspiring. It was a reminder that none of us are alone.”
Another meaningful part of the day was representing JZips. I had the opportunity to meet families whose children had received JZips during treatment, and hearing firsthand how the shirts had made a difference was incredibly rewarding. It was a full-circle moment. What began as a simple solution during my own treatment has grown into something that is helping other families navigate theirs.
My parents and grandmother joined me for the event, which made the experience even more special. My grandmother has been an important part of both my treatment journey and the inspiration behind JZips. On the drive home, we reflected on everything our family has experienced over the past several years and how meaningful it was to spend the day surrounded by survivors, families, and the incredible medical professionals who dedicate their lives to caring for us.
The connections didn’t end when the event was over. Yesterday, I joined a WhatsApp group created for the survivors who attended. It has already become a place where we can continue asking questions, sharing experiences, and supporting one another. Having a community of people who truly understand what it’s like to live with the long-term effects of a brain tumor is something I didn’t realize I was missing until now.
For many of us, this was the first time we had met a group of people our own age who truly understood what it was like to live with a brain or spinal cord tumor. That alone made the day unforgettable.
Cancer survivorship isn’t simply about finishing treatment. It’s about learning how to navigate the physical, emotional, and cognitive changes that may last for years. Events like this remind us that while every survivor’s story is unique, none of us has to face those challenges alone.
I want to sincerely thank Dr. Jessica Schulte, Dr. Devorah Segal, Sarah Coughlin, the entire NYU Langone team, and everyone who helped make this event possible. It was an incredible day of learning, reflection, and connection, and I truly hope this becomes an annual tradition. I know it made a lasting difference for me, and I have no doubt it did for many other survivors and families.
Experiences like this continue to shape not only my own survivorship journey but also the mission of JZips. Every conversation, every family I meet, and every survivor I connect with reminds me why my mom and I started this organization and why we’ll continue working to make treatment just a little easier for the next child, teen, or young adult beginning their own journey.
