A new drug, Modeyso, is extending the lives of patients with diffuse midline glioma (DMG), a devastating cancer with a historically grim prognosis. For decades, individuals diagnosed with this aggressive form of brain cancer faced a near-certain death sentence, often given just nine to twelve months to live. However, recent advancements – including Modeyso’s FDA approval – are changing that trajectory, providing months, even years, of extended life with improved quality.
The Challenge of Diffuse Midline Glioma
DMG affects primarily children and young adults, attacking the thalamus, brainstem, or spinal cord. The location of these tumors makes surgical removal too risky, leaving treatment options severely limited. With an overall survival rate of just one percent, the disease has long been considered incurable.
How Modeyso Works: A ‘Biological Flashlight’
Modeyso’s development stems from decades of research into how the body naturally fights cancer. Developer Dr. Joshua Allen sought to “bottle” the immune system’s ability to recognize and eliminate tumor cells without harmful side effects. His team engineered a fusion of the TRAIL gene (which triggers cancer cell death) with the bioluminescent luciferase gene found in fireflies.
This unique combination creates a “biological flashlight,” allowing scientists to track the TRAIL gene’s activity in real time. When a cancer cell activates TRAIL, it also glows, providing a visible signal of its destruction. This innovation built upon a key discovery: the H3 K27M mutation present in 70-90% of DMG cases. This mutation disables a critical “off switch” for genes, fueling uncontrolled tumor growth. Modeyso reverses this mechanism.
Real-World Impact: Extending Lifespans and Quality of Life
The drug isn’t a cure, but it’s giving patients precious time. Jace Ward, diagnosed in 2019, lived 17 months longer than expected, allowing him to experience milestones like playing sports, celebrating Christmas, and meeting his nephew. Ben Stein-Lobovits has been on Modeyso for seven years, with a 70% reduction in tumor size.
For Ethan White, a 20-year-old college student, the drug provided a critical window after radiation therapy. He was able to graduate with honors from the University of Michigan in December 2025. His mother, Michelle Sherman, emphasizes that Modeyso’s accessibility was “a major part of keeping him alive.”
A Turning Point in Cancer Care
Modeyso represents the “first change in standard of care in 60-plus years,” according to Lisa Ward, co-founder of the Tough2gether Foundation. The drug’s minimal side effects allow it to be combined with other treatments, maximizing its effectiveness.
More time translates to more memories, milestones, and the possibility of witnessing future breakthroughs. As research progresses, Modeyso provides a vital lifeline, offering patients with DMG a chance at a longer, more fulfilling life.
