Letter to the editor. Published on Sunday, March 30, 2025

My son died because his cancer was so rare there is no funding to find a cure  

When my 23-year-old son Max died in 2021 from a rare cancer that had no effective treatment options, I learned a devastating truth about our nation's cancer research priorities: So-called adolescent and young adult cancers, such as the one Max had, are especially deadly.  

These rare cancers receive only 4% of cancer research funding, despite accounting for roughly 25% of cancer deaths. This is not just a statistic to me — it’s the reason my son isn't here today. 90 days after his diagnosis, he was gone.

We did not get to have a college graduation party for him. We never celebrated his first job. We will not raise a glass at his wedding or hold his children. 

Max was diagnosed with NUT carcinoma, an aggressive and rare form of cancer that primarily affects young people. When we received his diagnosis, we were confronted with the most heartbreaking words a parent can hear: "There are no established treatments for this cancer."  

Those words haunt me daily. They represent not just a medical reality, but a systemic failure - one that has tragic consequences for thousands of families each year.

Through our grief, our family established the Max Vincze Foundation to fund critical research for NUT carcinoma. We've built partnerships with leading researchers at Dana-Farber Cancer Institute, University of North Carolina and Stanford. These committed scientists are making progress, but they face a precarious future.  

Recent budget freezes at the National Institutes of Health (NIH) and National Cancer Institute (NCI) threaten to halt this momentum we’ve seen in just a few short years. When federal funding stagnates, the cascading effect on rare cancer research is particularly devastating. Grant renewals are rejected, promising studies are abandoned, and young researchers leave the field entirely.  

For common cancers, such as breast, colon and lung cancers, pharmaceutical companies often fill funding gaps. For rare cancers like Max’s, government funding is often the only lifeline.  

Some argue that focusing on rare diseases is not cost-effective. This view is dangerously shortsighted. Breakthroughs in rare cancer research frequently lead to treatments for more common diseases.  

For example, the targeted therapies initially developed for rare leukemias now treat many cancers. Immunotherapy approaches originally tested in uncommon melanomas now benefit patients with numerous cancer types.  Moreover, rare cancers disproportionately affect young people.

Max was only 23. The years of potential life lost – and the accompanying economic and social contributions – represent an incalculable loss to society.  

To members of Congress considering NIH and NCI budgets: I invite you to meet the families of rare cancer patients. Look into the eyes of parents who've lost children to diseases that might have been treatable with adequate research. Speak with the scientists forced to abandon promising research due to funding constraints. I challenge you to maintain that a budget freeze is fiscally responsible after these conversations.  

To the public: We must demand better. Contact your representatives. Share stories of how cancer has affected your life. Vote for candidates who understand that medical research is not an expense – it's an investment with returns measured in human lives.  

Every day, researchers at institutions we support through our foundation come closer to treatments for NUT carcinoma. Similar stories are unfolding across the rare cancer landscape – but they all depend on consistent, robust funding. The gifted people who are working tirelessly to save families like mine from grief deserve our society’s full support. They should not have to depend on DIY funding sources such as the one our small foundation provides. America can and must do better for rare cancer patients. Their lives depend on it.

Again, I urge you to let your congressional representatives know you support federal government funding for cancer research, including for deadly adolescent and young adult cancers.  

Max should be here today – graduating college, starting his career, falling in love. Instead, I write this in his memory, determined that other families might be spared our pain.  

Suzanne Vincze, along with her husband Craig and son Ben, co-founded the Max Vincze Foundation in memory of their son and brother Max, who lost his life to NUT carcinoma, a rare and aggressive form of cancer. Their family-led nonprofit funds pioneering research at leading institutions including Dana Farber Cancer Institute, UNC, and Stanford University, while advocating for increased attention to rare cancers. Together, they work to transform the research funding landscape for underfunded cancers, particularly those affecting young adults. Their advocacy has brought together researchers, clinicians, and families to accelerate progress toward effective treatments for rare cancers. For more information go to maxvfound.org or email: suzanne@maxvfound.org