NV-RDAC Member Profile: Dr. Craig Vincze, Ph.D. March 2026 | Member-by-Member Series
In May 2021, a 22-year-old University of Nevada, Reno student named Max Vincze noticed a small lump on his neck while studying for a final exam. He figured it was an infection left over from a cold. He went to the doctor for antibiotics.
The lump kept growing.
After weeks of referrals, specialists, scans, and biopsies, the diagnosis came: NUT carcinoma — one of the rarest and most aggressive cancers known to medicine. There is no FDA-approved treatment. The median survival from diagnosis is six to seven months. And at the time, only one research lab in the world was dedicated to studying it.
Max passed away in 2021. He was getting ready to start his life.
His father, Craig Vincze — a Ph.D. biomedical engineer who had spent 25 years helping researchers develop life-saving therapies — now had a question he couldn’t put down: If the science exists to fight this, why isn’t it being funded?
The answer led him to build a foundation, fund research at three of the nation’s leading cancer centers, and eventually take a seat on the Nevada Rare Disease Advisory Council — where he brings a perspective the rare disease community urgently needs: someone who understands both sides of the innovation pipeline, from the laboratory bench to the patient’s bedside.
The Gap That Rare Diseases Fall Into
Here is a reality that most people never encounter until it’s their child, their sibling, or their parent: for the vast majority of the 7,000+ recognized rare diseases, there is no approved treatment.
The science often exists. Researchers at leading institutions are making breakthroughs in understanding the genetic and molecular mechanisms of rare conditions. But translating a laboratory discovery into a treatment that reaches a patient requires funding — and funding follows numbers. Pharmaceutical companies invest where the market is large. Government grants are competitive and slow. And for a disease that affects a few hundred or a few thousand people, the math rarely works in the patient’s favor.
This is the gap that families like the Vinczes fall into. And it’s the gap that Craig Vincze has spent the years since Max’s death working to close.
Building a Bridge From Lab to Patient
After Max passed, Craig and his wife Suzanne did something that most grieving parents wouldn’t have the expertise to do: they evaluated the research landscape.
Craig’s career had given him a rare vantage point. With a Ph.D. in biomedical engineering from the University of Nevada, Reno, and 25 years of leadership roles in the drug discovery and biotechnology industry, he understood how research pipelines work and where they break down. He had held roles at companies spanning the entire drug value chain, from discovery through manufacturing. He knew how to read the science, assess a lab’s readiness, and identify the projects most likely to make it from the bench to a phase one clinical trial.
So when the Vincze family learned about the work of Dr. Christopher French at Dana-Farber Cancer Institute — the researcher who first identified the NUT fusion oncogene and runs the only international registry for the disease — they didn’t just write a check. They conducted nearly a year of due diligence. Then they created the Max Vincze Foundation and made their first commitment: $100,000 to Dr. French’s lab.
That initial funding was pivotal. It enabled the creation of a critically-needed genetically engineered mouse model (GEMM) specifically for NUT carcinoma research — a tool that allows scientists to study the disease in a living system that closely mimics the human form. The GEMM led to new scientific insights, supported the publication of peer-reviewed research, and opened the door for additional labs to begin investigating treatments. Dr. French’s research findings, supported by the Max Vincze Foundation, are now being designed into a clinical trial.
The foundation has since expanded its funding to include research at the University of North Carolina and Stanford University. Each investment follows the same principle: find the science that is closest to making a real difference for patients, and give it the fuel to get there.
The Max Vincze Foundation was recently credited as a funder in a Dana-Farber study published in Nature Reviews Clinical Oncology revealing that NUT carcinoma is likely underdiagnosed because standard DNA testing misses the fusion genes that define the disease — a finding with immediate implications for how oncologists screen for and diagnose this cancer.
NUT Carcinoma: What You Should Know
~1,400 Estimated annual cases in the U.S. (likely underdiagnosed)
6–7 months Median survival from diagnosis
0 FDA-approved treatments
1 International registry (maintained at Dana-Farber)
3 Research institutions funded by the Max Vincze Foundation
NUT carcinoma is defined by a specific genetic fusion — the NUT gene joined to another gene (usually BRD4). It most commonly appears in the head, neck, or lungs, and disproportionately affects adolescents and young adults. Standard DNA testing misses the fusion genes that define the disease in more than 75% of cases, meaning many patients may be misdiagnosed or never diagnosed at all.
Why a Biomedical Engineer Belongs on the NV-RDAC
Most advisory councils are filled with clinicians, administrators, and patient advocates. Those voices are essential. But what happens when the council needs to understand why a promising treatment never reaches the patients who need it? Why a drug that works in a lab never makes it to a clinical trial? Why the research pipeline breaks and what it would take to fix it?
That’s where Craig Vincze’s expertise becomes irreplaceable.
As an NV-RDAC council member, Dr. Vincze brings a perspective grounded in the practical realities of moving science from discovery to delivery:
Understanding innovation pipelines. Craig has spent his career at the intersection of engineering and medicine building the tools, equipment, and processes that researchers and manufacturers need to develop and produce therapies. He understands the bottlenecks that slow the path from a laboratory discovery to an FDA-approved treatment, and he can translate that knowledge into policy recommendations that actually address root causes.
Evaluating research readiness. Not every promising study is ready for the next step. Craig’s experience in due diligence — assessing which research teams have the infrastructure, the data, and the scientific rigor to advance — helps the council think strategically about where Nevada’s investments in rare disease research can have the greatest impact.
Connecting Nevada to national research networks. Through the Max Vincze Foundation’s work with Dana-Farber, UNC, and Stanford, and through Craig’s participation in the BIO International Convention and the broader biotechnology community, he brings connections to national and global research efforts that can benefit Nevada’s rare disease community. His wife Suzanne’s role on the National Cancer Institute’s Targeting Fusion Oncoprotein in Childhood Cancers (TFCC) Steering Committee further deepens the family’s ties to the cutting edge of rare cancer science.
Bridging the gap between families and science. Craig knows what it’s like to search for answers in the middle of a crisis and find that the system isn’t built for rare. He can speak to researchers in their language and to families in theirs — a translation skill that makes the council’s work more effective and more human.
What This Means for Nevada’s Rare Disease Community
The Vincze family’s story illuminates a pattern that plays out across rare diseases: a family encounters a devastating diagnosis, discovers that the research and treatment infrastructure is inadequate, and then — if they have the resources and the resolve — builds what doesn’t exist.
But that model is not sustainable, and it’s not equitable. Not every family has a biomedical engineer who can evaluate a research lab’s readiness. Not every family can launch a foundation.
NV-RDAC exists to make sure they don’t have to.
The council’s work on research and collaboration, informed by members like Dr. Vincze, is focused on building systems that last beyond any one family’s fight:
Advocating for research funding pathways that support rare disease investigations at Nevada’s academic medical institutions, including the Kirk Kerkorian School of Medicine at UNLV and UNR’s School of Medicine.
Strengthening Nevada’s rare disease registry, which now includes 643 patient cases at 100% compliance with state reporting requirements, creating the data infrastructure that researchers need to study rare conditions at the population level.
Building connections to national collaboration networks so that Nevada families benefit from breakthroughs happening at institutions like Dana-Farber, regardless of geography.
Informing policy with innovation expertise so that legislative priorities reflect not just what families need today, but what the science will make possible tomorrow.
“Craig brings something to this council that you can’t learn from a textbook — he’s lived the gap between what science can do and what patients can access. He’s channeled the most devastating loss a parent can face into work that is literally changing the trajectory of research for one of the rarest cancers in the world. That combination of scientific expertise and personal mission makes him invaluable to NV-RDAC and to every family in Nevada navigating a rare disease.”
— Annette Logan-Parker, Chair, Nevada Rare Disease Advisory Council
About Dr. Craig Vincze, Ph.D.
Dr. Vincze is a biomedical engineer, biotechnology executive, and rare disease research advocate based in Reno, Nevada. He holds a PhD in Biomedical Engineering from the University of Nevada, Reno, where his dissertation research was patented by the university. His 25-year career spans drug discovery, laboratory automation, and biopharmaceutical manufacturing, with leadership roles at companies including Hamilton Company, ClickBio, and ARTeSYN Biosolutions.
Craig is the president of the Max Vincze Foundation, a 501(c)(3) private foundation funding rare adolescent and young adult cancer research, with active research partnerships at Dana-Farber Cancer Institute, the University of North Carolina, and Stanford University. He founded the NUT Carcinoma Alliance – Patient Advocates Advancing Research. He is a speaker at the BIO International Convention, NIIMBL: National Institute for Innovation in Manufacturing Biopharmaceuticals, and an NV-RDAC council member.
The Nevada Rare Disease Advisory Council was established by the Nevada Legislature in 2019 (SB 315) to improve awareness, diagnosis, treatment, and support for Nevadans living with rare diseases. Learn more at nvrdac.org.
NUT carcinoma is a rare, aggressive cancer with no FDA-approved treatment. If your family has been affected by NUT carcinoma or you are seeking information about diagnosis, research, or clinical trials, visit the International NUT Carcinoma Registry and the Max Vincze Foundation. You can also visit our website to find resources, connect with the council, or share your story.