In 2025, John Paul Macri learned that he was suffering from a fast-growing, aggressive type of brain cancer.
Nick and Katie Macri
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John Paul Macri was a healthy, happy 8-year-old when he started stumbling early last year. At first his parents thought he was just clumsy. But after he started walking with his head bowed, they knew something was wrong.
“He said, ‘Mommy, when my head is straight, everything is double,’” his mother, Katie Macri, recalls.
Doctors found a mass on his brain. In March 2025, his family received devastating news: John Paul had an inoperable brain tumor called DIPG. The five-year survival rate is about 2%.
“The prognosis we were told was that he would live between two and 11 months, and there was nothing we could do about it,” Macri said in an interview. “They just say, ‘What do you mean you can’t help my son? We live in America and we have great health care.’ It’s just so hard to wrap your head around it.
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John Paul’s parents did extensive research and found at least one promising drug on the horizon: a treatment that uses mRNA, the same technology as the Covid vaccines, to train a child’s immune system to attack the brain tumor. The scientists who developed the treatment were about to begin a clinical trial when the Department of Government Efficiency (DOGE) began a comprehensive review of scientific research grants from the National Institutes of Health. Between February and August 2025, more than $2 billion in funding was withdrawn or frozen for thousands of federally funded research projects.
In August 2025, the National Cancer Institute, a branch of the NIH, told the Pediatric Brain Tumor Consortium that it could no longer apply for new funding, according to Ira Dunkel, chair of the consortium, a network of academic centers and hospitals that supports clinical trials of new treatments for children with brain cancer. PBTC was founded by NCI in 1999 and the federal government provided the majority of the funding. At the time, Dunkel said the only justification he saw for the move was in a post on the NCI website that said in one paragraph that the decision followed “an assessment of how best to use clinical trial resources to achieve maximum impact.”
It’s incredibly frustrating. It’s like taking this organism that took a long time to build and worked very well and then killing it. Now we have to rebuild this organism.”
Eugene Hwang
Brain tumor expert at Children’s National Hospital
After that, no new patients could register for clinical trials. The Children’s Brain Tumor Project, a research initiative at Weill Cornell Medical Center, called the move “a huge step backwards,” adding that it will “slow progress, fragment efforts and ultimately cost lives.”
The consortium would have provided crucial infrastructure for the mRNA study, according to Eugene Hwang, a brain cancer expert at Children’s National Hospital in Washington DC who is developing the treatment. The move delayed the start of the trial by at least a year, he said.
“It’s incredibly frustrating,” he said. “It’s like taking this organism that took a long time to build and worked very well and then killing it. Now we have to build that organism again.”
In August, John Paul was admitted to intensive care with a brain hemorrhage. The five-year survival rate for DIPG is approximately 2%.
Nick and Katie Macri
Emily Hilliard, a spokeswoman for the Department of Health and Human Services, said the Trump administration is “committed to advancing childhood cancer research.”
NCI is transferring the studies conducted by the consortium to a larger network of hospitals and research sites because this will accelerate the development of new treatments, she said.
“This decision was not a cost-cutting measure,” Hilliard said in a statement. “Rather, it reflected the significant development of the pediatric cancer clinical trial landscape.”
NCI has worked to ensure that all children who participated in the consortium’s studies receive the care they need, Hilliard said, adding that the transition has not delayed possible treatments.
Dunkel said that wasn’t entirely true.
Two clinical trials were stopped because the consortium no longer received funding, he said. Four more will be transferred to the larger hospital network. However, there was a 13-month delay during which no patients could enroll in these trials, he said.
This decision was not a cost-cutting measure. Rather, it reflected the significant evolution of the childhood cancer clinical trial landscape.
Emily Hilliard
Department of Health and Human Services
“I consider this a very unfortunate loss for the pediatric brain tumor community,” Dunkel said.
The future of federal funding for scientific research remains uncertain. Last week, reports emerged that the Trump administration was drafting an executive order that would have allowed it to block NIH grants that did not align with a specific policy agenda. On Wednesday, Semafor was first to report that the White House backed away from those plans after members of Congress raised objections to the idea.
The loss of consortium funding dealt a blow to an already scarce area of cancer research. Only about 4% of federal funding for cancer research goes toward finding cures for childhood cancer. An even smaller portion is allocated to study treatments for pediatric brain tumors, which are one of the leading causes of cancer deaths in children. Most of the money comes from foundations set up by parents whose children died of brain tumors.
“Families host a lot of fundraising galas that they really don’t feel like going to after losing a child,” said Lisa Ward, who co-founded the Tough2gether Foundation after her son Jace was diagnosed with DIPG at age 20. She remains a vocal supporter of DIPG, even though Jace died from the disease in 2021.
DIPG, which affects about 300 U.S. children each year, is best known for taking the life of astronaut Neil Armstrong’s daughter in 1962. Over the next 60 years, thousands of children died from it. There is no cure. This is because it is difficult to produce a drug that can cross the blood-brain barrier and reach the tumor. This is also because doctors cannot surgically remove a tumor that grows in the brain stem. Ward compared it to both a spider web in a child’s brain and “glitter in a bowl of Jell-O” – almost impossible to remove.
Most new medications attempt to make small improvements over existing treatments, such as reducing side effects. Ward said that wasn’t the case in the search for a drug for DIPG.
“You’re trying to stop a runaway train,” Ward said.
Hwang is careful not to overstate the potential of the mRNA treatment he is developing with Elias Sayour, a pediatric cancer specialist at the University of Florida. The drug showed promising results in preclinical data. But many drugs show exciting results in animals but fail when tried on humans. Still, mRNA has proven effective in fighting other types of cancer. Merck and Moderna showed this in August when they announced positive results from a study in late-stage melanoma patients.
“I am as excited about this study as any other study we have done for this disease,” Hwang said.
Hwang and his collaborators are still trying to start the clinical trial. They are seeking support from another group, the Pediatric Neuro-Oncology Consortium, which is supported by philanthropic foundations that want better treatment options for children with brain cancer. You are also applying for an NIH grant. They plan to start the process as soon as possible and raise the money to complete it later.
John Paul Macri’s cancer has spread to his spine, making him ineligible for clinical trials. He is currently in hospice care.
Nick and Katie Macri
This will probably be too late for John Paul. While the radiation initially caused the tumor to shrink, late last year it began to grow again and spread to his spinal fluid. He started taking a new FDA-approved medication called Modeyso.
But it didn’t slow the cancer. Today John Paul can no longer walk. He eats through a feeding tube. He recently started having severe headaches and double vision. Doctors diagnosed him with hydrocephalus, an excess of brain fluid. Because the cancer has progressed to his spine, he is no longer eligible for clinical trials. In August he was admitted to intensive care with a brain hemorrhage. His family placed him in hospice care.
“If we can give him something that makes his day good, that he’s not in pain, that he can smile and laugh, and maybe one day this year he can go to school or spend time with his friends, then it’s worth it.”
John Paul’s mother believes his condition could be different now if the loss of federal funding hadn’t delayed the clinical trial. Instead, his family now lives day by day, finding solace in small moments of comfort.
“If we can give him something that makes his day good, that he’s not in pain, that he can smile and laugh and maybe one day this year he can go to school or spend time with his friends, then it’s worth it,” she said.
In Washington, uncertainty over medical research funding is often focused on the political battle between the Trump administration and scientists. Now the impact on patients is becoming clear.
“These decisions have very real consequences,” Macri said. “You may not have thought about the impact this has on a little boy named John Paul who is dying.”