Turning Thirty-Tumor: How Benjamin’s Diagnosis Sparked a Lifelong Fight — and a Lifesaving Breakthrough
Benjamin Stein-Lobovits was 31, newly married, and enjoying life with his wife, their dog, and a new home, when strange symptoms began to surface. His tongue went numb during a wedding trip to South America. Not long after, he misjudged a corner and walked straight into a wall at work. Concerned, he pushed for answers — and just a week before his 32nd birthday, he received a diagnosis that changed everything: a high-grade, inoperable brainstem glioma.
“I like to say I turned thirty-tumor,” he said, trying to inject a bit of humor into an unimaginably difficult moment. What followed was a grueling year of chemotherapy and radiation, the only treatment options initially available. A former computer engineer, Benjamin found himself on disability, navigating life with the long-term effects of treatment: balance issues, cognitive challenges, and fading short-term memory.
But even in the darkest moments, he refused to give up. Inspired in part by his father’s experience with an unrelated neurological disorder, Benjamin knew his body and trusted his instincts. He kept searching for more. That search led him to biomarker testing, which revealed he had the H3K27M mutation, a critical detail that opened the door to an emerging treatment: ONC201.
Originally, Benjamin had to travel from his home in Northern California to Seattle to receive the drug through an expanded access program. When that site shut down during the COVID-19 pandemic, he was able to transfer his care to Providence Saint John’s Health Center in Los Angeles. Fortunately, it was just a short flight — essential for a dad with two very young daughters at home.
Now, more than six years later, Benjamin is still taking ONC201, and remarkably, his tumor has regressed.
“This drug has truly been a breakthrough,” he said. “I believe without it, I wouldn’t be alive.”
ONC201 didn’t appear by chance. ChadTough Defeat DIPG Foundation has supported research into ONC201 for nearly a decade, funding early studies and clinical infrastructure to make access possible for patients like Benjamin. What started as a promising laboratory compound has evolved into one of the most hopeful treatments in the fight against H3K27M-mutant brain tumors, thanks in large part to long-term, committed funding from ChadTough and its research partners.
“I’m incredibly grateful for the researchers, clinicians, and foundations — like ChadTough — who have helped make this treatment a reality,” Benjamin said. “It’s given me years I didn’t think I would have.”
Even with his own challenges, Benjamin remains focused on giving back. He participates in support groups, mentors newly diagnosed patients, and advocates for continued access to ONC201. Recently, his oncologist informed him that the Los Angeles site faces similar financial pressure that led to the Seattle site’s closure. Benjamin is now raising funds to help keep the site operational.
“My goal is to help others find strength and hope,” he said. “I still have tough days, but I try hard to stay positive — for my wife, my daughters, and everyone out there still searching for their miracle.”
Benjamin’s journey is a powerful reminder of how far the field has come — and how far we still have to go. It’s also a testament to the importance of sustained investment in research. Without the foundational support from organizations like ChadTough Defeat DIPG, treatments like ONC201 might never reach the patients who need them most.
