How Georgie Turned a Childhood Brain Tumor Into a Catalyst for Change

At just five years old, Georgie D. was diagnosed with a brain tumor the size of a golf ball. Most memories from that time are hazy, but one remains vivid: zipping down hospital hallways on her scooter for a joyful childhood moment in the midst of uncertainty.

Before her diagnosis, Georgie endured excruciating headaches so severe they left her screaming, crying, and eventually passing out. It took several doctor visits before they discovered the tumor — a grade 2 oligodendroglioma located in her cerebellum, the part of the brain responsible for motor function and coordination.

Surgeons at New York University (NYU) successfully removed the tumor, but recovery was slow and frightening. In the days after surgery, Georgie kept her eyes closed, which worried her parents.

Georgie had to relearn how to walk. Her younger sister, just three years old at the time, showed Georgie how to crawl until she could take steps again. Just one month later, she started kindergarten.

Survivorship

Two decades have passed since Georgie’s diagnosis. Today, she lives in New York, works for a nonprofit, and continues to navigate life as a brain tumor survivor. Her only lasting physical side effect is a balance issue, which she’s learned to embrace with humor.

“It’s become what I like to call a party trick because I can’t walk a straight line,” Georgie said with a laugh. “Other times, I’ll think I’m standing straight when I’m actually leaning one way.”

But beneath the humor, Georgie also lives with survivor’s guilt, an emotional weight that many in the brain tumor community carry.

Finding Purpose Through Advocacy

During the COVID-19 pandemic, Georgie found herself drawn to advocacy. When a foundation that had supported her family early on shared information about the National Brain Tumor Society’s Head to the Hill event, she felt compelled to get involved.

In 2022, Georgie participated virtually, sharing her story with legislators and learning how her experience could help push for policy change.

“I was sitting in these meetings and realized where my story could be useful and how it directly related to the bills we were advocating for,” Georgie said.

She attended Head to the Hill in person for the first time in 2023, bringing her mom along for support and perspective.

“My mom filled in the gaps I couldn’t remember, and we shared our story together as parent and survivor,” Georgie said. “It was really powerful.”

Her mom, Michele F., who briefly lived in Washington, D.C., as a child, helped turn the advocacy trip into something even more memorable. Every May, they return together for a mother-daughter trip.

“It’s become something we look forward to every year,” Georgie said. “We’ve made special memories visiting the National Mall, the White House, and museums like the Holocaust Museum. It’s created this special bond with my mom.”

Finding Community at Head to the Hill

One of the most meaningful parts of Head to the Hill for Georgie has been finding a sense of belonging.

“Being in New York, we have what we call our ‘New York family’ at Head to the Hill,” Georgie said. “Each year, we count down the days until we can catch up and spend quality time together. If you’re looking for a community of people who understand, this event is where you’ll find it.”

At Head to the Hill, Georgie joined her fellow brain tumor advocates to urge their members of Congress to increase brain tumor research funding and co-sponsor the Bolstering Research And Innovation Now (BRAIN) Act. 

“I think increasing brain tumor research funding is really important because for many brain tumors, there’s not a set treatment that’s proven to work,” Georgie said. “We need to figure out how to increase life expectancy and give people hope. For some cancers, like breast cancer, there are all kinds of treatment options, but there aren’t many options when it comes to brain tumors. People’s lives are at stake, and we need answers.”

In their meetings with members of Congress and their staff, advocates share their stories to show why brain tumor research funding and other important policies matter to this community.

“People may worry that their story won’t make a difference at Head to the Hill,” Georgie said. “But everyone’s story is impactful in some way. Everyone’s story matters. The stories are what’s going to bring about change. At Head to the Hill, you’re going to find a supportive environment of people who will welcome you with open arms.”

Mental Health Matters

May is not only Brain Tumor Awareness Month but also Mental Health Awareness Month, which Georgie is also passionate about as she works for a local chapter of National Alliance on Mental Illness. 

“A few years ago, I learned about a five-year-old boy in my community,” Georgie said. “He was Japanese. My grandmother is from Japan, so I’m part Japanese. Our favorite foods were both sushi, and he was diagnosed with diffuse intrinsic pontine glioma (DIPG) and later passed. There were so many similarities between us, and the guilt started to really eat me up.”

His passing marked one of the hardest times in Georgie’s life and took a significant toll on her mental health. In her healing process, she found solace in art, deep breathing, and advocacy.

“Part of my recovery has again been advocating because it does make me feel like I’m doing good in the world, and it’s given me a lot of strength, hope, and that sense of belonging,” Georgie said. “I think that people, when they are struggling with their mental health, just feel lost, and they feel like they’re alone. But there are communities out there that want to be able to welcome you with open arms. People do care.”

While navigating survivor’s guilt, depression, and anxiety, Georgie uses her personal story to raise awareness about brain tumors and mental health to offer hope to others.

TAGGED WITH: Oligodendroglioma

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