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Contributor: How federally funded research saved my son's sight — and his life — from a rare cancer

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Contributor: How federally funded research saved my son's sight — and his life — from a rare cancer

If you want to make this country great, imagine the strength of a nation whose children have been fought for and know they have been fought for.

Last month, my son reached two years in remission from a rare, malignant cancer that almost took his eye and his life. He is alive, well and enjoying 20/20 vision because of a groundbreaking treatment that was pioneered by National Institutes of Health researchers, among others, and funded by the government grants the Trump administration is blocking and threatening to cut. If the president continues on this course, children diagnosed during and after this administration will needlessly fare worse than those who came before.

My son Jack was diagnosed in 2022 with retinoblastoma, a malignant childhood cancer of the central nervous system that originates and grows in the eye. If left untreated, it typically migrates through the optic nerve to the brain, eventually metastasizing and taking the life of the child.

Because the cancer usually attacks children under the age of 3, its victims are often unable to report the symptoms of a mass blocking their vision until it’s too late to treat with procedures that can salvage the eye. That’s when enucleation — removal of the eye — is required.

This is why pediatricians developed standard screening for retinoblastoma starting at birth. This now-routine preventative care has enabled medical professionals to find and treat most cases without a loss of vision or life. Because of these developments and others, retinoblastoma has a very high survival rate in 21st century America.

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Jack’s was one of very few documented diagnoses with retinoblastoma after the age of 8. His oncologist suggested his tumor had been hiding in a dark corner of his retina for years, out of his vision and that of physicians; other doctors thought it had “self-arrested” or presented late and grew rapidly. We discovered it only because it burst from the impact of a belly flop at the neighborhood pool, spewing cancer cells in a constellation of poison floating inside his still-intact eyeball, visible to Jack as spots that didn’t go away.

It took weeks for doctors to nail down the diagnosis. When we walked out of that appointment on a day that was so windy I had to hold onto my dress, I put Jack in the car, turned the radio on for him, closed the passenger door and walked about 30 feet away to scream in the parking lot. “My baby!” I wailed through the phone to my mother.

It was an advanced-stage tumor, complicated by the release of cancer cells inside his eye. They could now attach and grow anywhere within — including the optic nerve, with its direct connection to his brain — if we didn’t act quickly. We might have just days before it was too late.

“We could remove his eye,” our oncologist offered at first, “and even that might not be enough.”

Medical researchers from universities and the National Institutes of Health rally near the Health and Human Services Department’s headquarters in Washington.

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(John McDonnell / Associated Press)

Then he explained that we could try to save his eye with a highly advanced procedure called intra-arterial chemotherapy, or IAC. It involves threading a catheter through the thigh’s femoral artery, behind the heart through the carotid artery and into the skull. An interventional radiologist, guided by MRI, releases the chemotherapy agent directly into the artery feeding the retina. This allows doctors to deliver more aggressive and targeted medicine to the diseased cells and limit damage to the healthy ones.

Our oncologist explained that IAC is still a very new technology but one with extraordinary promise whose benefits far outweighed the risks for Jack.

My son underwent six rounds of intra-arterial chemotherapy and seven rounds of intravitreal chemotherapy, in which the medicine is injected directly into the eye. He went under anesthesia 13 times in six months, required monthly breathing treatments that made him spit gray foam, and lost most of the brow and all the lashes around the affected eye. His list of drugs included ketamine, propofol, hydromorphone, melphalan, fentanyl, topotecan, pentamidine, albuterol, prednisolone and aldosterone. At one point, he needed epinephrine because he nearly went into cardiac arrest. Toward the end of his treatment, he received cryotherapy to kill the base of the tumor and woke up from surgery in so much pain that he gritted his teeth to the point of cracking one.

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At every turn, my family was reminded of our privilege — to live in a country that was scientifically advanced enough to have developed such miracle treatments, to live in a city (Denver) with such good hospitals, to have good health insurance through my husband’s employer. If we had lived without such access to care, in a country lacking our resources or just 15 years earlier, our story would have ended differently. Instead, nine months after his diagnosis, thanks to the advanced research our country has supported socially, academically and financially, my son’s cancer was in remission.

My family recently attended a gathering with other retinoblastoma survivors, from toddlers to adults who had conquered the disease decades earlier. As each survivor entered the conference, it became evident that this was once primarily a disease of blindness: The price of survival was generally a loss of sight and eyes. Some of the older survivors had facial abnormalities from radiation or enucleation. Some had canes or family members to guide them. When we told the group that Jack’s body, vision and dream of becoming a pilot were all still intact, many gasped in awe that the science had advanced so far.

But now the Trump administration’s lack of empathy threatens other children and families facing such horrific diagnoses. Continuing research on intra-arterial chemotherapy and other treatments at the University of Colorado’s Anschutz Medical Campus, where Jack was treated, is paid for by programs in the administration’s crosshairs. “These cuts to NIH funding jeopardize the foundation of our life-saving research,” a university spokeswoman told Chalkbeat Colorado. “Reduced research capacity means fewer scientific discoveries, job losses and delayed advancements on therapies and cures that could improve — and save — lives.”

I wonder whether our hospital will be able to continue offering groundbreaking treatments should Jack face a recurrence. And will the newly diagnosed have the same access to care that we did? What greatness can be celebrated when a mother fears she will lose her child’s access to lifesaving treatment?

My son’s recovery was a direct result of the greatness of our country and its past leaders, who had the foresight to pursue progress and excellence in science and refuse to accept losing children without a fight. Because of it, I believe my son will someday fly planes. And I can only hope the next child who faces a dire disease will get the same chance he did.

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Dayna Copeland is a writer and teacher in Colorado.

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Pace of N.I.H. Funding Slows Further in Trump’s Second Year

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Pace of N.I.H. Funding Slows Further in Trump’s Second Year

Spending on new medical research by the National Institutes of Health has fallen roughly $1 billion behind the pace of years past, delaying thousands of scientific projects and raising concerns within the agency that it may struggle to pay out the money it was allotted by Congress.

Instead of canceling grants en masse, as the N.I.H. did in the first year of this Trump presidency, it is now vetting them before approval with a “computational text analysis tool” that scans for terms including “racism,” “gender” and “vaccination refusal,” according to documents obtained by The New York Times.

That tool was meant to formalize a campaign against “woke science” that was initiated last year by the Elon Musk-led Department of Government Efficiency.

But the screening system is now exacerbating a slowdown in research spending: The N.I.H. awarded only about 1,900 new and competitive grants from October to late March, less than half the number it tended to give out by that point in the fiscal year during the Biden administration, an analysis by The Times showed.

The heaviest damage to the grantmaking apparatus was done by the protracted government shutdown in the fall, which delayed grant review meetings by months. The N.I.H. has struggled to catch up, and delays are affecting fields far beyond those ostensibly targeted by the administration’s crusade against diversity, equity and inclusion.

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As of late March, for example, the National Cancer Institute had earmarked only about $72 million for new and competitive research grants, less than one-third of the nearly $250 million it had agreed to spend by that point in a typical fiscal year during the Biden administration, according to The Times’s analysis.

“It means that people get fired because there is uncertainty about whether the grant will come through,” said Dr. Joshua Gordon, a professor of psychiatry at Columbia University and a former director of the National Institute of Mental Health. “It means budgets get busted. It means research projects get stalled.”

However alarming the canceled grants and spending delays were last year, Dr. Gordon said, “I’m more worried this year.”

The Department of Health and Human Services, which oversees the N.I.H. and is led by Secretary Robert F. Kennedy Jr., has become involved this year in flagging certain grant awards and stopping their release, according to emails reviewed by The Times.

Mr. Kennedy faced sharp criticism from Democratic and Republican lawmakers alike over N.I.H. spending delays in congressional hearings this week. He is set to appear at two more hearings on Wednesday.

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The N.I.H. has fallen behind in part because it lost thousands of workers last year to layoffs and early retirements. In some branches of the agency, what workers remain can barely keep up with renewing existing grants, much less awarding new ones.

One N.I.H. institute has less than half of the workers needed to vet grants for legal and financial compliance, employees were told at a recent meeting, notes from which were reviewed by The Times.

Under the most dire projections, the institute could leave $500 million of congressionally appropriated funding on the table because of difficulties processing grants, N.I.H. officials said at that meeting. They were temporarily deploying career scientists to what were effectively business roles to speed up grant awards.

The N.I.H. director, Dr. Jay Bhattacharya, has said that he is trying to root out ideologically motivated and insufficiently rigorous science. Conservatives accuse the N.I.H. of having fostered such research during the Obama and Biden presidencies by, for example, encouraging grant proposals on sexual- and gender-minority groups.

“Scientists will no longer have to mouth D.E.I. shibboleths to garner funding,” Dr. Bhattacharya and his top deputy wrote in an online article in December, the day before the N.I.H. outlined the new screening process to its employees.

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Andrew Nixon, a health department spokesman, blamed the spending shortfall on “the Democrat-led shutdown,” which he said “delayed N.I.H.’s ability to issue grants” at the start of the fiscal year. Since then, he said, “timelines have returned to typical funding patterns.”

He added that the agency “uses a variety of review tools to ensure alignment with agency priorities” and that it was working to hire additional employees. “The N.I.H. intends to obligate all appropriated funds, as directed by Congress,” he said.

To understand why spending has slowed so dramatically at the N.I.H., the world’s premier funder of medical research, The Times interviewed 10 agency employees and reviewed internal documents, including spreadsheets of grants flagged by the screening tool and the list of roughly 235 terms it searches for.

The employees spoke on the condition of anonymity because they were not authorized to comment publicly.

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The documents painted a picture of an agency whose leaders were seeking to exert greater control over scientific spending by, among other things, deciding whether certain grants were compatible with agency priorities. But in clamping down on the funding process, the N.I.H. created new choke points, leaving some proposals in limbo for days or weeks.

That has frustrated some senior N.I.H. officials, one of whom lamented in an email seen by The Times that it was taking too long to rework grant proposals. The official asked his staff to simply strip the proposals of disfavored terms instead.

The delays have also angered lawmakers. Congress sets the country’s medical research spending levels, even as the administration has leeway to prioritize types of studies. And despite Mr. Trump’s proposing major cuts last year, Congress preserved the N.I.H. budget at roughly $47 billion for 2026.

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“It is very frustrating to understand that this administration can circumvent dollars that were designated for our scientists,” said Senator Angela Alsobrooks, Democrat of Maryland.

Congress’s budget buoyed American scientists. By late 2025, many believed that they had weathered the worst of Trump-era funding problems. The N.I.H. spent aggressively toward the end of the last fiscal year, overcoming earlier blockages and delays.

The Supreme Court also let stand a lower court’s ruling that the policy behind the cancellation of more than $780 million in N.I.H. grants was probably unlawful, a victory for groups that had argued the terminations were arbitrary and capricious.

But the Trump administration was preparing a far more systematic crackdown on what it saw as unreliable research.

In August, Dr. Bhattacharya publicly outlined the agency’s new priorities, including opposition to “research based on ideologies that promote differential treatment of people based on race or ethnicity,” a template that could be used to guide grant reviews.

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Then, in December, the N.I.H. introduced its employees to the “computational text analysis tool,” allowing the agency to comb through new grant proposals and existing projects for phrases suggesting a grant “may not align with N.I.H. priorities,” a guidance document would later tell employees.

Roger Severino, a vice president of the conservative Heritage Foundation and a health official in the first Trump administration, said that weeding out such grants was necessary to rid the N.I.H. of the “politicization” of the Obama and Biden eras.

If the result was less spending on science, he said, that was only because the agency had been wasting money.

“There was a tremendous amount of bloat that grew up like barnacles on the N.I.H. research ship,” Mr. Severino said. “Those barnacles are being scraped off.”

Within some divisions of the N.I.H., the text search tool is flagging as many as half of grants, officials said, requiring staff scientists to extensively document how they will be reworked or why they already conform to agency priorities.

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Flagged grants address cancer, diabetes, autoimmune diseases, H.I.V., heart disease, stroke, Alzheimer’s disease, nutrition and prenatal care, internal documents show.

In part because many of them look at the use of screenings or treatments, they sometimes include mention of “inequities” in access to care or “minority” groups who disproportionately suffer from a disease, causing the system to deem the grants not “clean.”

In one case, a biological science grant was held up for a week because the proposal had used “sex” interchangeably with “gender,” a flagged word.

American scientists already spend some 40 percent of their time on grant-related administrative tasks. Now they are being deluged by ever more paperwork, said Dr. Michael Lauer, who led external grantmaking at the N.I.H. until last year.

And because the N.I.H. is awarding grants to far fewer researchers this year, the chances of success have rarely been lower.

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“This is lost time for all of us,” Dr. Lauer said. “Instead of spending their time doing science and hopefully making discoveries that will make us all healthier, they’re rewriting grant applications.”

Sheryl Gay Stolberg contributed reporting.


Methodology

The Times analyzed N.I.H. grants data from N.I.H. RePORTER for the fiscal years 2021 through 2026. The analysis excludes awards for intramural research conducted at the N.I.H. Clinical Center. The analysis focuses on new awards (Type 1 awards) and competitive renewals (Types 2, 4 and 9).

The analysis uses data through March 2026, the most recent month comparable to prior years. Previous records suggest that the data available on RePORTER for that month, however, may still be missing up to 10 percent of awards. The analysis accounts for that possibility.

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Lyrids Meteor Shower: How to Watch, Peak Time and Weather Forecast

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Lyrids Meteor Shower: How to Watch, Peak Time and Weather Forecast

Our universe might be chock-full of cosmic wonder, but you can observe only a fraction of astronomical phenomena with the naked eye. Meteor showers, natural fireworks that streak brightly across the night sky, are one of them.

The latest observable meteor shower will be the Lyrids, which has been active since April 14 and is forecast to continue through April 30. The shower reaches its peak April 21 to 22, or Tuesday night into Wednesday morning.

According to NASA, the Lyrids are one of the oldest known meteor showers, and have been enjoyed by stargazers for nearly 3,000 years. Their bright, speedy streaks are caused by the dusty debris from a comet named Thatcher. They appear to spring from the constellation Lyra, which right now can be seen in the eastern sky at night in the Northern Hemisphere.

The moon will be about 27 percent full tonight, appearing as a thick crescent in the sky, according to the American Meteor Society.

To get a hint at when to best watch for the Lyrids, you can use this tool, which relies on data from the Global Meteor Network. It shows fireball activity levels in real time.

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And while you gaze at the heavens, keep an eye out for other stray meteors streaking across the night sky. Skywatchers are reporting that the amount of fireballs is double what is usually seen by this point in the year.

There is a chance you might see a meteor on any given night, but you are most likely to catch one during a shower. Meteor showers are caused by Earth passing through the rubble trailing a comet or asteroid as it swings around the sun. This debris, which can be as small as a grain of sand, leaves behind a glowing stream of light as it burns up in Earth’s atmosphere.

Meteor showers occur around the same time every year and can last for days or weeks. But there is only a small window when each shower is at its peak, which happens when Earth reaches the densest part of the cosmic debris. The peak is the best time to look for a shower. From our point of view on Earth, the meteors will appear to come from the same point in the sky.

The Perseid meteor shower, for example, peaks in mid-August from the constellation Perseus. The Geminids, which occur every December, radiate from the constellation Gemini.

Michelle Nichols, the director of public observing at the Adler Planetarium in Chicago, recommends forgoing the use of telescopes or binoculars while watching a meteor shower.

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“You just need your eyes and, ideally, a dark sky,” she said.

That’s because meteors can shoot across large swaths of the sky, so observing equipment can limit your field of view.

Some showers are strong enough to produce up to 100 streaks an hour, according to the American Meteor Society, though you probably won’t see that many.

“Almost everybody is under a light-polluted sky,” Ms. Nichols said. “You may think you’re under a dark sky, but in reality, even in a small town, you can have bright lights nearby.”

Planetariums, local astronomy clubs or even maps like this one can help you figure out where to go to escape excessive light. The best conditions for catching a meteor shower are a clear sky with no moon or cloud cover, sometime between midnight and sunrise. (Moonlight affects visibility in the same way as light pollution, washing out fainter sources of light in the sky.) Make sure to give your eyes at least 30 minutes to adjust to seeing in the dark.

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Ms. Nichols also recommends wearing layers, even during the summer. “You’re going to be sitting there for quite a while, watching,” she said. “It’s going to get chilly, even in August.”

Bring a cup of cocoa or tea for even more warmth. Then lie back, scan the sky and enjoy the show.

Storm systems sweep across the country in early spring, and some will be obscuring skies tonight. But there will still be plenty of areas with clear skies, particularly in parts of the central United States.

“The best spot is going to be in the Upper Midwest,” said Rich Bann, a meteorologist with the Weather Prediction Center.

Minnesota, Wisconsin and Iowa will offer especially good sky-viewing weather and a beach on the Great Lakes could be a nice spot to look up at the stars.

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But don’t expect to view the show from Chicago, as Illinois could see some thunderstorms. The weather will be better in the Northern and Central Plains, particularly the eastern Dakotas.

High, wispy clouds are expected over the Ohio and Tennessee Valleys and into parts of the Mid-Atlantic. But, Mr. Bann said, “you may be able to see some shooting stars through thin clouds.”

Clouds will be draped across much of the Southeast and the Northeast, though there could be some clearing in Florida, Georgia, the Carolinas and Virginia. Remember, the meteors could be visible all night long. If you look outside and see clouds, try again later.

Catching the spectacle will be challenging across much of the West, particularly from Washington into Northern California, where a storm system is bringing rain and snow. That system will move east overnight.

There are likely to be some pockets of clear skies at times across southern Nevada, northwest Arizona and southwest Utah, Mr. Bann said.

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Amy Graff contributed reporting.

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FBI probes cases of missing or dead scientists, including four from the L.A. area

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FBI probes cases of missing or dead scientists, including four from the L.A. area

Amid growing national security concerns, the FBI said Tuesday that it has launched a broad investigation in the deaths or disappearances of at least 10 scientists and staff connected to highly sensitive research, including four from the Los Angeles area.

“The FBI is spearheading the effort to look for connections into the missing and deceased scientists. We are working with the Department of Energy, Department of War, and with our state and state and local law enforcement partners to find answers,” the agency said in a statement.

The FBI’s announcement comes after the House Oversight Committee announced that it would investigate reports of the disappearance and deaths of the scientists, sending letters seeking information from the agencies involved in the federal inquiry as well as NASA, which owns the Jet Propulsion Laboratory in La Cañada Flintridge, where three of the missing or dead scientists worked.

“If the reports are accurate, these deaths and disappearances may represent a grave threat to U.S. national security and to U.S. personnel with access to scientific secrets,” Reps. James Comer (R-Ky.), chairman of the committee, and Eric Burlison (R-Mo.) wrote in the letters.

President Trump told reporters last week that he had been briefed on the missing and dead scientists, which he described as “pretty serious stuff.” He said at the time that he expected answers on whether the deaths were connected “in the next week and a half.”

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Michael David Hicks, who studied comets and asteroids at JPL, was the first of the scientists who disappeared or died. He died on July 30, 2023, at the age of 59. No cause of death was disclosed.

A year later, JPL physicist Frank Maiwald died at 61, with no cause of death disclosed.

Two other Los Angeles scientists are part of the string of deaths and disappearances.

On June 22, 2025, Monica Jacinto Reza, a materials scientist at JPL, disappeared while on a hike near Mt. Waterman in the San Gabriel Mountains.

On Feb. 16, Caltech astrophysicist Carl Grillmair was fatally shot on the porch of his Llano home. The Los Angeles County Sheriff’s department arrested Freddy Snyder, 29, in connection with the shooting. Snyder had been arrested in December on suspicion of trespassing on Grillmair’s property.

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Snyder has been charged with murder.

There is no evidence at this point that the deaths and disappearances, which occurred over a span of four years, are connected.

A spokesperson for NASA, which owns JPL, said in a statement on X that the agency is “coordinating and cooperating with the relevant agencies in relation to the missing scientists.

“At this time, nothing related to NASA indicates a national security threat,” agency spokesperson Bethany Stevens wrote. “The agency is committed to transparency and will provide more information as able.”

Representatives from Caltech, which manages JPL, did not immediately respond to a request for comment.

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