It was as if his muscle memory had evaporated. Twenty-year-old Ethan White couldn’t remember how to use drumsticks. The drum that he knew as if it were part of his body suddenly became a foreign object. His right hand felt weak, and the University of Michigan student thought it might just be fatigue. After all, the Michigan Marching Band had just finished a busy football season by winning the 2024 CFP National Championship in January. By mid-February, Ethan began to notice other strange things, such as stumbling while climbing stairs and difficulty holding things in his hands.
In March, an MRI discovered a tumor in his thalamus, deep in the middle of his brain. Ethan was diagnosed with a condition Diffuse midline glioma (DMG), a cancer that represents a death sentence for the vast majority of people who develop it. DMG refers to cancerous tumors that grow on the thalamus, brainstem, or spinal cord. Surgery is out of the question, because these parts of the brain are dangerous to operate on, making it one of the most difficult types of cancer to treat.
DMG primarily affects children and young adults, and the overall survival rate is only 1 percent. Patients are usually given Nine to 12 months To live. While the prognosis for DMG has been bleak for decades, patients like Ethan are finally starting to see that change.
Using a biological flashlight
new Approved by the FDA The treatment is called Model it It gives patients with DMG more time – adding months, even years, while maintaining quality of life. “It’s the first change in standard of care in more than 60 years,” says Lisa Ward, co-founder of Tough2gether FoundationHe tells Popular Science. Her son Jess died in 2021 from diffuse intrinsic pontine glioma (DIPG), a form of DMG. “It’s the first step and a whole new path of hope.”
Modiso’s journey toward a cure began a few decades ago. After losing his mother to cancer, developer Modeyso Dr. Joshua Allen He became fascinated by the cancer defenses that already existed in the human body.
“Evolution has been working on the cancer problem for a long time, much longer than humans have,” Allen says. Popular Science. “We all get cancer several times throughout our lives. Evolution has given the human immune system ways to recognize cancer cells and get rid of them. There are these really cool things in immune cells that can kill tumors but don’t cause side effects.”
Allen wanted to find a way to package this. He began searching for a molecule that could trick tumors into self-destructing. His research used bioluminescence, a tool scientists often use to track the success of cancer treatments. The luminescent luciferase gene is the same gene that makes fireflies light up. For Allen, who grew up in Georgia catching fireflies in bottles with his brother, this has come full circle.
The laboratory inserted the firefly gene into Jane Trail. TRAIL genes are produced naturally in our bodies, and selectively trigger cell death in cancer cells. The fusion of TRAIL and luciferase became a biological flashlight, making cancer cells glow. Whenever a cancer cell turns on the TRAIL gene, it also produces luciferase, allowing scientists to detect TRAIL-expressing cells through its bioluminescent signals.
The missing piece of the puzzle
At the same time, bereaved families were donating the bodies of their deceased children to medical research in the hope of finding new treatments, leading to experts finding an important mutation they had never known about before. Named H3 K27Mthe mutation was present in 70 to 90 percent of children who died from DIPG. Scientists realized that it was also present in other midbrain tumors.
This was the missing piece of the puzzle for Allen and his colleagues. H3 K27M destroys a key “off switch” of genes, causing widespread and uncontrolled gene activity, which keeps cells in a proliferating state that causes tumor growth.
Now, Modiso is reversing this mechanism. The dose is once a week in pill form, and can be taken by patients over one year of age. Allen calls it “hope in a bottle.” Although it is not a cure, the drug helps prolong patients’ lives with very few side effects.
“It’s the first big win, being able to have more time,” said Tammy Carr, co-founder of Chad Foundation difficult defeat DIPGHe tells Popular Science. Carr lost her five-year-old son, Chad, to DIPG a decade ago.
“When you get a diagnosis like this, you’re told your child has nine to 12 months to live. Every minute counts, so being able to have more time is a big win from a family’s perspective,” Carr says.
Twenty-year-old Jess Ward started taking Modiso after being diagnosed in 2019. The young athlete got 17 months to spare before he died in July 2021.
“The medication has worked very well for him,” says Jess’s mother, Lisa. “For 17 months, he could play basketball and golf — and he could have Christmas and meet his nephew for the first time. All these memories were made because instead of six months, he had 17 months.” good “months.”
Sometimes, treatment works longer. Thirty-nine-year-old Ben Stein-Lobovits has been taking Modiso for seven years. Eight years ago, he was at a wedding in Chile when he traced the numbness in his tongue to the effects of alcohol. Soon after, an MRI showed he had a brainstem glioma. After radiation, he was started on Modiso.
“I think I’m the longest patient in this,” Stein-Lubovitz says Popular Science. The father-of-two has seen a 70 percent reduction in the size of his tumor, according to his latest scan. He is now calling on patients to get Modiso as soon as possible.
“The earlier the intervention, the better,” he says.
For people with cancer, more time means vacations, family bonding, and milestones. But it also means the possibility of being there when you are there He is treatment. The drug’s minor side effects make it easy to combine with other treatments as well.
Normal gift
In June 2024, four months after his scary moment with the drum, Ethan began taking Modiso. He had completed 30 radiation sessions that helped shrink the tumor, and his family and doctors saw an opportunity to combine the new drug with some other medications to keep the tumor at bay.
“Get to [Modeyso] “He was a major part of keeping him alive,” says Ethan’s mother, Michelle Sherman. Popular Science.
Ethan was able to live a relatively normal college life for more than a year after that, rock climbing, going to class, and living with friends. Sherman says it gave him time and quality of life. Ethan graduated with honors from the University of Michigan on December 14, 2025.
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