Family foundation memorializes son and brings focus to rare cancer

“He was just a cool kid—and just getting ready to start his life.” – Suzanne Vincze, Max’s mother

In May 2021, Craig and Suzanne Vincze’s son Max was studying for a final exam during his senior year at the University of Nevada, Reno, when he noticed a small lump on his neck. Thinking it could be an infection left over from a cold a couple of weeks prior, Max went to the doctor for a round of antibiotics. The lump, however, continued to grow.

After several painstaking weeks of referrals and specialists, scans and biopsies, the initial diagnosis was that the lump was a tumor, and the tumor was cancerous. And at the rate the tumor was growing, it was clear it was aggressive. Once the tumor had grown so large it began to cut off his airway, Max was admitted to a local Reno hospital. A week later, the results came back: Max had NUT carcinoma, and it was already in stage IV.

Max’s father, Craig, whose background is biomedical engineering, found himself at a loss. “When NUT carcinoma was first mentioned, I had never heard of it. And—as it turns out—most of the oncologists had never heard of it, either,” he explains.

NUT carcinoma is a very rare and aggressive form of cancer that can develop anywhere in the body, but most often in the head, neck, or lungs, and affects primarily young adults ages 16-23. What makes NUT carcinoma so lethal is that it has no known cause, genetic or environmental, and currently no known treatment. Additionally, symptoms rarely present during early stages, which makes the disease hard to identify and easy to misdiagnose.

Once past the initial shock of Max’s diagnosis, the frustrating challenges of battling a rare and largely unknown cancer like NUT carcinoma quickly became evident to Craig and Suzanne.

“Before we started chemotherapy, the oncologists wanted to know what the tumor was, and these specialized pathologies take a long time to get back from the lab,” Craig explains. “We’d be waiting and watching the tumor grow so fast you can tell it’s bigger in one day. With this type of cancer, that’s life and death.”

The family’s frustrations continued beyond diagnosis and into treatment. “They immediately started treating him, but there is no treatment protocol, so it was just kind of a series of trial and error,” Craig continues. Despite doctors’ best efforts to treat Max through a potent combination of chemotherapy, radiation, and immunotherapy, his cancer was unresponsive. Max passed away in September 2021, just three months after his diagnosis.

Devastated by his passing, Craig and Suzanne returned to that initial feeling of confusion and helplessness during Max’s short cancer battle. “We just found ourselves going, ‘I’ve been studying this my whole life and I’m confused…on every level. Imagine what other families are feeling here. We just have to do something,’” Craig recalls.

That “something” became the Max Vincze Foundation, a philanthropic organization aimed at providing private funding to research labs that are working to find a treatment for adolescent and young adult (AYA) cancers like NUT carcinoma. The Vinczes first discovered Dana-Farber Cancer Institute through a simple online search—while sleeping on the floor of Max’s hospital room one night—of NUT carcinoma, which connected them to the work of Christopher French, MD; Geoffrey Shapiro, MD, PhD, Dana-Farber’s senior vice president of developmental therapeutics; and the NUT Carcinoma Registry. They called and left a voicemail and were shocked to receive an immediate call back on a Friday evening, at 7 p.m. local time in Boston.

“They called and wanted his records, they wanted phone numbers of his doctors, they were on it so fast, and we were like, ‘We have to get to Dana-Farber, we have to get to this place,’” Suzanne recalls. Sadly, by that time, Max’s condition had progressed too far for him to travel, leaving him unable to receive treatment at Dana-Farber. But after he passed, Craig and Suzanne reconnected with French to provide him with Max’s data and enter him into the NUT Carcinoma Registry, and that’s when they learned about the groundbreaking work being done at the Institute.

“In getting to know Dr. French and his lifelong dedication to this disease—and the struggle that a rare cancer investigator goes through—we decided we wanted to create a foundation specifically for research and specifically going to Dr. French and Dr. Shapiro’s efforts to come up with a treatment,” Suzanne says. Suzanne and Craig’s decision to bolster the lab came from understanding the doctors would have freedom to use the money where they could put it to best use, whether that be a clinical trial, an additional research fellow, or a mouse study.

Suzanne, Craig, and Max’s younger brother, Ben, were able to visit Dana-Farber in August 2022, where they presented French and his lab with the first $70,000 installment of an overall $100,000 pledge, a result of hundreds of generous donors, including many of Max’s former Zeta Psi fraternity brothers at the University of Nevada, Reno. During their visit, the Vincze family also learned about Dana-Farber’s history with NUT carcinoma, the milestones met, and the future of research.

Since first discovering and characterizing the disease here in Boston in the early 2000s, Dana-Farber has remained on the forefront of NUT carcinoma research. Dana-Farber founded the International NUT Carcinoma Registry in 2010, a worldwide database that collects and stores data on NUT carcinoma patients to be used for research initiatives and scientific discoveries. In 2020, a study by Dana-Farber and Brigham and Women’s Hospital researchers made important discoveries about the effectiveness of different treatments on certain patient types. And in 2021, Dana-Farber sponsored the first-ever symposium on NUT carcinoma, pulling together worldwide experts on the disease to raise awareness and initiate a consensus on standardized treatment. Beyond that, several clinical trials of drugs targeting NUT carcinoma cells are either already under way or are expected to launch later this year.

While funding research for NUT carcinoma is their first project, Craig and Suzanne are passionate about the adolescent and young adult space as a whole, and would eventually like to open up their foundation to include other rare diseases that have promising science but challenges with research funding.

“In doing our research, we discovered that the young adult bracket is the most underserved, under-researched bracket, with survival rates that are worse than those of pediatric and adult patients,” Suzanne explains. “There’s this huge gap. This very, very worrisome gap.”

The Vinczes’ solution is, first, to learn as much as they can about NUT carcinoma, about the rare cancer space, and about what is being done to change it. They’ve watched countless livestreams and recordings of research symposiums, hosted advocacy days, testified in front of their elected representatives, and sat on local rare disease councils, all to broaden their understanding of the space they intend to impact.

“One of the most startling things we learned is that all rare cancers combined make up about 20% of cancer incidences. That’s no longer rare. But unfortunately, that 20% of rare cancers receives just 4% of all cancer funding at the moment,” Craig says.

“If somebody doesn’t step up, then things just keep going the way they’re going. There has to be a pattern interrupt. And that’s what we want to do,” he continues.

For Craig and Suzanne, priorities include building out an “impact network,” to ensure doctors and researchers outside of epicenters like Boston still have access to research data and important clinical trials; and allowing investigators to continue testing drugs that have been “shelved” as a result of failed clinical trials.

“The medicines that come out of research of rare diseases benefits all cancers. All diseases,” Suzanne says. “We believe a breakthrough in rare cancer is a breakthrough for everyone.”

To help contribute to these breakthroughs and make an impact like Craig, Suzanne, and the Max Vincze Foundation, consider donating to the Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.