Benjamin (Ben) Stein-Lobovits: Watching His Daughters Grow Up After a Diffuse Midline Glioma Diagnosis

In 2017, Benjamin (Ben) Stein-Lobovits, at age 31, had recently gotten married. Ben and his wife bought a house and adopted a dog. They were looking forward to starting a family when he began to experience unusual symptoms.

Ben started having worsening headaches and a feeling of numbness in his tongue. At first, Ben brushed them off. “Then, at work, I turned a corner and just walked into a wall,” he recalled. “I said to myself, ‘That was very, very weird,’ and I knew something was wrong.”

Ben’s stepfather is a family physician who rarely worries about minor symptoms. When Ben told him about his symptoms, however, his stepfather recommended seeing a neurologist. Although the neurological exam appeared normal, Ben insisted on getting an MRI, which revealed a brainstem glioma—an aggressive brain cancer.

Because of the tumor’s location, surgery was not an option and even getting a biopsy was risky. Ben desperately searched for answers about his future. The prognosis was devastating and uncertain. He searched the Internet and found that patients with his disease survived around 10 months. But Ben was determined to beat the odds. “I said to myself, ‘That’s just a statistic. I’m one of one, and I’m not going to die,’” he recalled.

Before starting chemotherapy, Ben and his wife made the difficult decision to seek out fertility preservation options and freeze his sperm, hoping it would one day allow them to have children. At the time, they had no idea whether that day would ever become a reality.

The months after starting chemotherapy and radiation were difficult. Treatment left him exhausted and depressed, but he remained determined to keep searching for options beyond standard therapy.

Ben immersed himself in scientific literature, leading him to researchers investigating the potential of liquid biopsies—tests that can use blood and other body fluids to reveal molecular features of a tumor. Ben directly reached out to the study’s authors and was eventually connected with researchers who tested his cerebrospinal fluid. The test showed that his tumor had an H3K27M mutation, making him eligible for an experimental drug called ONC201. Now known as dordaviprone (Modeyso), the drug targets tumors carrying the H3K27M mutation found in many diffuse midline gliomas.

Even though Ben was eligible to participate in the clinical trial, getting the drug was not straightforward. Through his research and outreach, Ben found physicians willing to enroll him, but he had to travel monthly from California to Washington for treatment. Later, he had to transfer his care to Los Angeles when the original trial site lost funding and closed during the COVID-19 pandemic.

Unlike chemotherapy, the investigational therapy caused virtually no significant side effects. “That was such a relief after going through chemo and radiation,” Ben said.

Nearly 9 years after his diagnosis, Ben is still taking dordaviprone. His tumor has shrunk by about 70 percent and many of his neurological symptoms have diminished. His experience reflects how new treatments are beginning to improve outcomes for patients who have historically had very few options. In August 2025, dordaviprone received FDA approval for adult and pediatric patients with diffuse midline glioma who have an H3K27M mutation.

Long-term survivorship has brought new challenges. While Ben has experienced few lasting side effects from dordaviprone, he continues to manage cognitive difficulties caused by earlier radiation treatment. At 32, he also went on long-term disability. “My cancer journey has totally changed my life,” he said. “I’m a different person than I used to be, and that’s something I’m still dealing with and grappling with. A sense of self, my career, my purpose. Everything was just gone.” Yet he has built a life that once seemed beyond reach.

A few years after his diagnosis, Ben and his wife decided to use his frozen sperm to start a family. They now have two daughters, and much of Ben’s motivation comes from watching his daughters grow up. “This treatment is hope,” he said. “Hope for the future. To be able to be there for my daughters. I dream of being there on their wedding day.”

Ben has become a dedicated mentor and advocate for other patients with diffuse midline glioma. He regularly connects with newly diagnosed individuals, helping them navigate a disease he knows all too well. “Mentorship and advocacy are beyond purposeful to me,” Ben said. “Just hearing other people’s stories gives me hope.”

His message to policymakers is simple. “Don’t cut funding,” he said. “We need the funding to continue research. I’m living proof of what cancer research can do. We need the research to keep people alive.”