There may be a promising new treatment on the horizon for advanced breast cancer patients, according to developing research.

Researchers are studying the cancer-killing drug trastuzumab rezetecan for those with ERBB2-low metastatic breast cancer, whose tumors have low levels of HER2, a protein that can help cancer cells grow.

A phase 3 clinical trial called HORIZON-Breast06 sought to determine whether the drug works better than standard chemotherapy for patients with this cancer type.

SHIFT IN CANCER SCREENING GUIDANCE HAS EXPERTS CLASHING OVER NEW GUIDANCE

The researchers analyzed 551 female patients across 73 hospitals in China who were randomly assigned to receive either the drug intravenously every three weeks, or the physician’s choice of chemotherapy. The study period lasted from June 2023 to August 2025.

The drug significantly delayed cancer progression compared with chemotherapy, giving patients more than a year before their cancer began growing again.

The median time without tumor growth was 16.4 months compared to 6.8 months with chemo.

FDA APPROVES ONCE-DAILY PILL FOR DEADLY CANCER AFTER PATIENTS' SURVIVAL RATES NEARLY DOUBLE

Patients who received trastuzumab rezetecan were 73% less likely to have their cancer worsen or die during the study than patients who received chemotherapy.

The drug appeared to delay cancer progression in patients with both hormone receptor-positive and hormone receptor-negative breast cancer.

The results were published in JAMA.

Tumors shrank in 75.5% of patients who received the drug, compared with 41.2% of those who received chemotherapy.

At the 12-month mark, 90.6% of trastuzumab rezetecan patients were alive, compared to 81.4% of chemo patients.

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The authors concluded that trastuzumab rezetecan provided "significant progression-free survival benefit over physician’s choice of chemotherapy in patients with ERBB2-low advanced breast cancer."

Loren Rourke, a Texas-based breast surgical oncologist and author in Texas, called the results "incredibly encouraging."

"When you're talking about women living with advanced breast cancer, those months matter," Rourke, who was not involved in the study, told Fox News Digital. "They represent more time when the cancer is being held in check and potentially more opportunities to enjoy life without the disease getting worse."

What makes these findings especially exciting, according to the oncologist, is that the treatment showed benefits across different types of breast cancer.

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"It's another important step forward, and it gives us genuine reason to be hopeful," she said. "A treatment that can keep cancer from progressing for a longer period has the potential to make an enormous difference in a patient's life."

While the drug may cause fewer serious lung problems than similar treatments, it was linked to other side effects, including anemia and other blood-related problems.

Serious side effects occurred in more than 84% of patients who received the new drug, compared with nearly 68% of those who received chemotherapy.

Rourke emphasized the importance of considering the side effects, "because more time without cancer progression doesn't automatically mean better quality of life."

"We need to better understand the side effects, particularly the significant decreases in blood counts that can lead to fatigue, anemia and increased risk of infection," she said.

The researchers acknowledged that toxicity occurred more frequently and often required dose modification, although they said these effects were "generally manageable."

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The experts agreed that more research is needed.

"As exciting as these findings are, there are still important questions we need to answer," Rourke told Fox News Digital. "We know this treatment delayed cancer progression, but we don't yet know whether it will help patients live longer. That's an important distinction."

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"It's important to celebrate meaningful progress while making sure we're asking the right questions about what comes next."

• A new study explored the differences between tumors in younger and older colon cancer patients.
• Younger patients sometimes had more aggressive, treatment-resistant forms of colon cancer.
• Staying active, cutting down on processed foods, and getting screened are good ways to lower risk.

People under 50 aren't only at a higher risk of colon cancer today than they were a few decades ago. They're also developing a different, sometimes more aggressive form of it compared to older patients, scientists say.

A new study published in Nature Medicine analyzed 189 tumors from colorectal cancer patients aged 29 to over 90, including measurements of gene activity in more than 850,000 cancer cells.

The goal was to look at how tumors varied "across the entire spectrum of age," Dr. Ana Anderson, a co-senior author of the study who leads the cancer immunology program at the Gene Lay Institute at Brigham and Women's Hospital in Boston, told Business Insider. "Is it the same colon cancer but just happening in younger people, or is there something different about it?"

As a result, the study was able to map out gradual, subtle differences in colorectal cancer tumors correlated with age. While the researchers couldn't pinpoint exactly why tumors in younger people look different, Anderson said the study is an exciting starting point for further research.

"There's a lot of interest in lifestyle factors and environmental exposures as potential contributors; however, nothing specific has been pinned down," Anderson said. "What we did is take a rather simple but comprehensive approach just to try to understand the disease itself."

Younger patients' tumors had a different cellular makeup

The study's researchers couldn't definitely state that colon cancer in younger patients is always more aggressive — that would require more study.

However, what they did find was that younger patients "generally have more aggressive disease and they are generally more resistant to the standard of care therapies, which is mostly chemotherapy," Anderson said.

Tumors in younger patients generally had a higher presence of supporting and connecting cells known as stromal cells. Stromal cells, such as fibroblasts, can produce factors that suppress the immune response, making it harder for chemotherapy drugs to work. "They essentially can form a shield that protects the tumor from infiltration," Anderson said.

The study found that the presence of stromal cells generally declined from younger to older patients, and the youngest patients tended to have the highest number of stromal cells in proportion to cancer cells.

The reverse was true for the oldest patients, who generally had the fewest stromal cells and the highest numbers of cancer cells.

Researchers narrowed down where to look for answers

Younger patients also had higher activity of long non-coding RNAs (lncRNAs), which are associated with cellular signaling in cancer. The study also found gene activity in younger patients that suggested stronger signaling between cells — potentially helping cancer cells move and invade nearby tissue.

The problem is, lncRNAs are still a fairly recent discovery; they only became linked to cancer research in the late 2000s, with some poorly understood ones referred to as "dark RNAs." "A lot of them have just not been researched, and that's why they're called 'dark RNAs' — it's a big mystery," Anderson said.

For that reason, she said it was the finding she considered most promising. "There's a world of biology to be discovered there — we know where to focus our research efforts," she said.

Anderson, an immunologist, also hopes to explore the presence of immune cells in younger colon cancer cases, as immune cells are involved in killing cancer cells but were "under-captured" in this study, she said. "There are many types of immune cells," she said. "Are there different subsets that are more present in the young tumors or absent in the young tumors versus the older tumors?"

Reduce your risk with these simple habits

While the study doesn't present any immediate new takeaways for young people concerned about colon cancer, Anderson suggested following existing guidance for lowering your risk.

She noted that the recommended screening age for most people was lowered from 50 to 45 a few years ago, but that it's wise to see a doctor sooner if you experience common colon cancer symptoms like rectal bleeding, abdominal pain, bloating, or changes in bowel movements.

If you're "extra cautious," she said, it's never a bad idea to stay active and cut down on inflammatory foods such as ultraprocessed snacks and alcohol.

Jean Kaseya, of the Africa CDC, warns of the illness spreading like Covid unless more funding is secured to increase preparedness and possible treatment

The “unprecedented” spread of the Ebola outbreak means it could reach the UK and other countries, according to one of Africa’s top health officials.

As the current outbreak reached 10,000 cases, with almost 5,000 deaths, Dr Jean Kaseya, director general of the Africa Centres for Disease Control and Prevention (CDC), compared the outbreak to the Covid pandemic, which first took hold in China before spreading to countries across the world, claiming millions of lives, and ravaging health systems and economies.

Experts say symptoms such as dark circles under the eyes, grey skin, cracked lips and hair loss can be a warning sign – but there are other factors too

TikTok is rife with influencers warning of “ferritin face”, a term they use to describe the pallor, dark circles, dry skin, and hair loss claimed to indicate low iron stores. But is this based on fact or fiction, and when is it time to head to the GP?

In 2016, the HBO comedian and political commentator John Oliver produced a terrific segment on how TV pundits routinely cite garbage science. After showing clips of newscasters and commentators making absurd claims such as, "A new study showing that drinking a glass of red wine is just as good as spending an hour at the gym," and The Today Show's Al Roker commenting, "You find the study that sounds best to you, and you go with it," Oliver commented, "No! No, no, no, no, no, no, no! You don't just get to cherry-pick the parts that justify what you were going to do anyway."

Then Oliver added a useful rule: "If they are going to keep saying 'a study says,' they should have to provide sourcing and context or not mention it at all." (Though the segment specifically targeted the misuse of "scientific" studies, all the same principles apply to the social sciences.)

What's so noteworthy about that 2016 segment is that in his other monologues, on issues ranging from SWAT teams to homelessness, Oliver has routinely ignored the principles he laid out. In his overly simplistic takes on complex policy issues (often designed to dunk on his ideological opponents for comedic effect), he often fails to provide appropriate context and appears to be guilty of choosing research "that sounds best," as Roker put it, or at least that supports whatever point he's determined to make.

Oliver is one of America's most influential pundits, so he should be held to the highest of journalistic standards. And Last Week Tonight is indeed more diligent than many TV news programs. The show employs researchers who interview the authors of the studies it cites. Oliver is a comic, not an academic, so we can excuse him for not posting footnotes, and he routinely cites his sources on screen. When we emailed the show's producers to point out problems with their research, to their credit, they sent back a detailed response that we'll quote from in this article. (In a few cases, they pointed to Reason articles using some of the same studies, albeit with full citations and more context. In cases in which their criticisms were correct, we've annotated the original articles.)

Many of the show's researchers are former reporters and editors who abide by journalistic standards. Nevertheless, the show has a long track record of citing social science findings without the appropriate context, massaging them to support whatever point Oliver is trying to make.

Rent

In his excellent 2016 segment on scientific studies, Oliver noted: "There is a lot of bullshit currently masquerading as science. Not all scientific studies are equal. Some may appear in less-than-legitimate scientific journals, and others may be subtly biased because of scientists feeling pressured to come up with eye-catching positive results."

Cut to a 2022 segment titled "Rent," and we find Oliver citing a study that his wiser self would have characterized as "bullshit."

"Right now, there is not a single county in the U.S. where a worker earning minimum wage can afford a modest two-bedroom rental home," he said. He was citing a study designed to produce an "eye-catching" result. It was published not by a reputable journal, but by the National Low Income Housing Coalition, an advocacy group that lobbies for government spending on housing and rent subsidies, including expanding the National Housing Trust Fund and increasing federal appropriations to the Department of Housing and Urban Development.

The biases are not particularly subtle. Why would a minimum-wage worker need a two-bedroom home? In the study, "can afford" doesn't mean "have enough money to buy the cheapest available," as most English speakers would interpret it. The authors use it to mean renting a two-bedroom home at the 40th percentile price point of the local market (that is, a little cheaper than the median unit), using no more than 30 percent of their income, excluding government benefits, pensions, or other nonearned support.

Oliver also didn't mention who these minimum-wage workers are. In 2025, according to the Current Population Survey, a third of hourly workers paid the federal minimum or less lived in a parent's or grandparent's home, a fifth were married and living with a spouse, and only one in eight lived alone.

When we asked the show's producers why they failed to disclose that their source was an advocacy group seeking government funds, they pointed to the onscreen credit and responded: "We trust our viewers' intelligence enough to think they might be able to read it and conclude that the National Low Income Housing Coalition is interested in building low-income housing, nationwide, possibly even as part of a coalition."

I don't share their confidence that most viewers can read the onscreen source line and tell from the organization's name whether it's an advocacy group. There's a double standard here: When Oliver doesn't like what a study says, he's not content to just trust his viewers; he makes it explicit, as he did with the "ethanol lobbying groups" mentioned above.

Oliver's producers wrote us: "When we rely on studies from advocacy groups, we look at the underlying data and speak to researchers to better understand it; we discard many studies as a result."

This one belonged in the trash.

Sports Betting

In a 2025 segment, Oliver cited an eye-catching statistic about how sports betting was driving a spike in bankruptcies. "Unsurprisingly, the rise of online sports betting has been found to correlate with a rise in gambling harms, with one study showing that in states that allowed it, there was a 28 percent increase in bankruptcies, translating to about 100,000 extra bankruptcies a year."

I'll give Oliver credit for saying "correlate with" rather than "cause," but the rest of that sentence ("in states that allowed it, there was a 28 percent increase") implies direct causality.

The bigger problem is that the "100,000" figure is clearly wrong. When I contacted the study's authors, they told me they don't know where that figure came from, and it doesn't appear anywhere in the study. Last Week Tonight's producers told us they pulled it from a Business Insider article, but in the video, Oliver said it came from the study.

If Oliver's researchers had done the same calculation as the authors, multiplying the per-person effect by the at-risk population, they'd have found about 30,000 extra bankruptcies a year, not 100,000, and a 6 percent to 7.5 percent increase, not 28 percent.

Oliver also left out important context: He was citing an unpublished working paper. The peer-reviewed version appeared after the Last Week Tonight segment aired, and it included substantive changes. Working papers from credible researchers, like this one, are valuable, but Oliver should have made it clear he was citing a preliminary draft circulated to other researchers for comment, not a published study.

Homelessness

In 2021, Oliver did a segment making a case for a policy called "Housing First," which includes placing more homeless people in permanent supportive housing. The problem is that building and maintaining these units is expensive, so permanent supportive housing doesn't scale easily. Oliver set out to dismiss that objection by citing research showing the alternative is even more costly.

"One study in Florida," Oliver said, "found that, just between money spent on incarceration and emergency medical treatment, their communities and local governments had spent an average of just over $31,000 per person per year, when the estimated cost of providing them with permanent supportive housing would have only been around $10,000 per year."

The Florida study's finding was an outlier. The Central Florida Commission on Homelessness commissioned it, and Housing First advocates promoted it because it produced the headline they wanted. I give Oliver credit for noting that the study "tracked a decade's worth of spending on just 107 chronically homeless people," but he left out additional context.

In 2018, a committee convened by the National Academies of Sciences, Engineering, and Medicine evaluated permanent supportive housing. It concluded that there is "no substantial evidence that [it] contributes to improved health outcomes" and "insufficient evidence" that it's cost-effective.

Studies exist on both sides of this issue, and we can debate whether permanent supportive housing is more cost-effective than the alternative, but Oliver cited one study and implied it was conclusive.

Oliver also neglected to mention that the paper was written by a consulting firm led by a supportive-housing advocate, though if you looked closely, you could see the organization's name on the screen as he delivered his monologue.

Ethanol

Oliver and I agree that the federal government shouldn't be subsidizing ethanol. But in a 2024 segment titled "Corn," Oliver pointed to a study claiming that ethanol is more harmful to the environment than gasoline and implied that only self-interested lobbyists say otherwise.

"While ethanol lobbying groups have long argued that it slashes greenhouse emissions," he said, "one recent study found that corn ethanol produced under the renewable fuel standard has a carbon footprint at least 24 percent higher than regular gasoline."

What Oliver doesn't mention is that the 2022 study he cited was highly contested. It was challenged not only by "ethanol lobbying groups" but also by the U.S. Department of Agriculture under the Biden administration. The study's claim that ethanol has a higher carbon footprint than gasoline also contradicts a 2010 Environmental Protection Agency projection that ethanol would be about 20 percent cleaner than gasoline. Argonne National Laboratory, running the government's standard model, credits ethanol with cutting greenhouse emissions by more than 500 million tons in 15 years.

The problem isn't that Oliver is wrong; it's how he presented this study. Whether ethanol mandates are good or bad for the environment is a complicated, contested issue, with strong studies on both sides (and plenty of weak ones). Plucking one from the pile and reporting its findings is misleading.

Ethanol subsidies are bad because they involve politicians using mandates to buy farmers' votes, and top-down mandates generally lead to less optimal decision-making. But it's not clear that ethanol increases carbon emissions.

SWAT Raids

In a 2014 segment on police militarization after the fatal shooting of Michael Brown in Ferguson, Missouri, Oliver said, "There has been a massive rise in both the number and the use of police department SWAT teams," and showed a news clip that stated: "The number of SWAT raids has gone up by 1,400 percent since the 1980s. An estimated 50,000 now take place every year." Instead of mocking the clip, as he often does, Oliver cited it approvingly.

So where did the claim of a 1,400 percent increase come from? It's based on a voluntary mail-in survey, which isn't a reliable way to gather data. No official count of SWAT raids exists, and almost nobody tracks them, then or now, so the figure rests on departments' self-reporting of how often they "deployed," with no shared definition of what that means.

The 1980s figures that form the baseline for the 1,400 percent increase in SWAT raids come from a mid-1990s survey, making them especially unreliable. No one was counting SWAT raids at the time, and there's no way to verify them.

Oliver followed that clip by citing another study: "Just keep that clip in mind," he said, "when I tell you that 79 percent of SWAT deployments are now for executing search warrants, and most of those were for drug investigations."

Again, there's missing context. That 79 percent figure comes from a small, nonrandom sample generated by an American Civil Liberties Union records request; the organization could get data from just 20 of America's roughly 18,000 police agencies.

When we pointed out to Oliver's producers that the data on SWAT teams were stripped of their context, they replied that since this segment aired, "We've become more diligent about critically interrogating the sourcing on studies in our shows." They also argued that more "recent studies," if anything, suggest that the studies they cited "understated the true scope of things." And they pointed to instances of Reason citing the same data.

I agree with Oliver's position on SWAT raids, but he really should be agitating for better data. We're permitting state violence without anyone keeping the detailed records that could help us understand the costs and benefits. But that doesn't excuse citing two studies based on weak data and presenting them as fact.

Tipping

In a 2025 segment on tipping, Oliver said, "Recent analyses have found that poverty rates for tipped workers are over twice as high as for nontipped workers."

Twice as high as for which nontipped workers? The analysis he's citing included all nontipped workers in the U.S., including CEOs and neurosurgeons. Oliver, who reportedly makes $30 million a year, also pulled up the nontipped average. The right way to evaluate tipping is to match tipped and untipped workers by job: Waiters have about the same poverty rate as fast-food workers, and hotel maids about the same as other cleaners. If you control for job, age, and hours, the gap closes.

It's another study designed to generate a talking point, which isn't surprising since it was published by the Economic Policy Institute, a progressive, left-of-center think tank. The organization's name appeared onscreen as Oliver delivered his monologue, but, once again, viewers would need to hit pause to look it up and figure out what the Economic Policy Institute stands for.

Oliver's 2016 segment on "scientific studies" shows that he should know better. It's possible to construct arguments by citing good research responsibly, while providing the proper context and sourcing. It's possible to follow research where it leads, instead of retrofitting it to preconceived ideas. You just have to be willing to present data that capture reality in all its messiness, even if that means it won't generate an easy laugh line.

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The post John Oliver Warned Against Cherry-Picked Studies. Then He Cherry-Picked His Own. appeared first on Reason Magazine.

O Centro de Ciências do Mar (CCMAR) associa-se, assim, a um grupo reduzido de instituições que detêm este selo no nosso país. O reconhecimento é atribuído pela Comissão Europeia e destaca o compromisso do CCMAR na progressão da implementação dos princípios da Carta Europeia dos Investigadores, promovendo uma melhoria contínua das políticas e práticas de […]

Mark Johnson | The Atavist Magazine | September 2026 | 2,048 words (7 minutes)

This is an excerpt from issue no. 180, “The Family Plan.”

At first she told no one. Not her twin sister. Not her mother. Not even her father the scientist.

Six-year-old Jenna Smith knew better than to pee when she was in the bath. But on that night in 1992, in her family’s home in Iowa City, the water felt so comfortable against her skin that she didn’t want to get out of the tub. It seemed like such a small thing. Who would know?

Seconds later the water around her waist turned reddish pink. Blood? It had to be. Jenna wondered if she’d hurt herself. “I was six years old sitting in a bathtub, watching a few seconds of my world stop making sense,” she would recall years later.

She kept the blood a secret because she didn’t want to admit that she’d peed in the bath. But when it was still in her urine the next time she used the toilet, she went to her mother. Concerned, her mom called her dad, Richard Smith, and he took Jenna to the emergency room.

Richard was an ear, nose, and throat doctor in the University of Iowa’s school of medicine, a researcher who would become one of the world’s authorities on the genetics of hearing loss. His wife, Lynne Lanning, had worked as both a lawyer and a nurse. They had four young children: twins Jenna and Jessica, who were identical, and two boys, Luke and Rion.

At the ER, doctors ran tests on Jenna, but they couldn’t identify the cause of the blood. In the days that followed the bleeding intensified. At her parents’ urging, Jenna collected samples of her urine in Dixie cups for further testing. The doctors remained stumped, however, and after a while Jenna found the whole thing more annoying than worrisome.

The uncertainty was much harder on her parents. It wasn’t that doctors were misdiagnosing their daughter; they were unable to diagnose her at all. “It was horrible,” Richard said. “Imagine seeing your child and you know something is wrong, and you know the doctors treating her have no clue what to do.” Richard called a pediatric nephrologist he knew in Houston, where the family had lived previously. The nephrologist listed several conditions that could be causing the bleeding and said that, to determine which was to blame, Jenna’s parents should take her to Cincinnati Children’s Hospital Medical Center.

In July 1992, Richard, Lynne, and Jenna drove nearly 500 miles to get answers. Doctors in Cincinnati diagnosed Jenna with dense deposit disease, a condition in which proteins clog and damage the kidneys, leading to renal failure in many patients. There was no cure.

The hospital couldn’t tell the family much else—no one could. The disease was exceedingly rare, afflicting between one and three people in a million. Back home, Richard and Lynne spent hours inside the University of Iowa’s quiet medical library, poring over papers in search of information about their daughter’s illness. They could find no evidence that anyone was actively studying the condition.

Although many Americans—roughly one in ten—suffer from a rare disease, the experience can be lonely. Friends and relatives don’t understand the unique miseries such illnesses impose on daily life. Few doctors are likely to have encountered them before. And because there aren’t many patients, drug companies usually don’t invest in research for treatments.

Richard and Lynne feared that their daughter’s life might be tragically brief. Sometimes the mention of weddings would sink Lynne into melancholy; she couldn’t bring herself to watch the movie Father of the Bride. Richard agonized over what to do. His training compelled him to seek answers, but he wanted to be Jenna’s father, not the scientist charged with curing her. He kept his research focused on hearing loss. At first, anyway.

Stories of scientific discovery almost always celebrate individual researchers, consigning the contributions of loved ones, communities, and colleagues to footnotes. There are exceptions―the teams that built the first atomic bomb and deciphered the human genome, for instance. Science also has its share of famous families. Marie and Pierre Curie, along with their daughter Irène and her husband, Frédéric, won five Nobel Prizes between them for discoveries related to radioactivity. For the most part, however, the history of scientific progress has been mythologized as a succession of brilliant, driven individuals—often men—who chose the lab over the dinner table and competition over collaboration.

Some scientists have embraced the role of maverick. “You have to worry about your own work and ignore what everyone else is doing,” the physicist and Nobel laureate Richard Feynman is said to have told a colleague. The decades-long pursuit of a treatment for Jenna’s disease followed a very different path. There was no single hero, no lone scientist seeking glory. The biomedical quest required the efforts of a family and their neighbors in Iowa City, and the work of scientists around the globe. Together they changed an obscure area of medicine.

Richard and Lynne met in 1977, when both were working at Memorial Hermann-Texas Medical Center in Houston—she as a nurse, he as a medical intern. He noticed a run in her nylons and was smitten by her smile. She liked his down-to-earth manner and intelligence, his humor and kindness. They were working in the hospital’s burn unit when he asked her out.

The couple married in 1981, and except for two years in England, they remained in Houston until 1990. That December they moved to Iowa City, where Richard had a job waiting for him leading the pediatric otolaryngology division and running a research lab at the University of Iowa’s medical school. They had been there only a year when Jenna got sick.

Richard and Lynne learned that their daughter’s disease was caused by a malfunction in her complement system. Believed to have evolved long before other parts of our immune infrastructure, the complement system sends proteins to battle foreign invaders. Unlike antibodies, these proteins are not tailored to fight a specific virus or bacteria, but they kick into gear faster when a threat is detected. In people with Jenna’s condition, the complement system is like a runaway train: Proteins become overstimulated and then accumulate in the glomeruli, tiny filters the kidneys use to clear waste from blood.

Blood in the urine is one symptom of the disease. Others include swelling, high blood pressure, inflammation, and fatigue. When Jenna was in the first grade, her body struggled to make growth hormones. Her production of red blood cells slowed, and she grew increasingly tired. During rehearsals for The Nutcracker ballet around Christmas 1993, she’d finish her part and then lie down backstage, completely spent.

Doctors put her on a heavy dose of the steroid prednisone and on blood-pressure medication. The prednisone caused her body to retain water. She woke up each morning with her eyes swollen shut, then waited in bed until the swelling receded. She couldn’t fit into her clothes or shoes. She wore flip-flops and roomy jumpers Lynne sewed for her.

As twins, Jenna and Jessica had always been close. They played together, made up songs and dance moves, explored the woods near their home, and enjoyed pranking friends and family members. “She made a lot of things feel not so heavy,” Jenna said of her sister. Still, she sometimes thought that Jessica “got off scot-free” by not having dense deposit disease. Neither girl liked feeling different from the other. (Years later, Jessica would be diagnosed with type-1 diabetes; Jenna would not.)

The changes to Jenna’s appearance meant the girls were no longer identical. Once, according to Lynne, when a boy at school said that Jenna couldn’t be a twin anymore because of how she looked, Jessica slugged him. Lynne recalled sitting in the principal’s office, politely listening to a lecture—this is not the way we resolve things!—but understanding why Jessica had lashed out. Nothing was so frightening to her daughters as the idea that they’d stop being twins.

About half of those afflicted with Jenna’s disease progressed to kidney failure within a decade of diagnosis; it took her less than a year. She made it through the last day of first grade. Then, as other children departed for summer camp, she went to a clinic. While her classmates practiced archery and did arts and crafts, she learned about the catheter doctors would surgically insert in her body. Through that tube, a machine would pump fluid into her abdomen, where her peritoneum—her abdominal lining—would take over the filtering function kidneys usually perform.

She would take the peritoneal dialysis machine home with her and use it every day for the foreseeable future, possibly for the rest of her life. When a nurse tried to take Lynne aside to show her how to operate it, Jenna stopped her. “I’m the patient,” the seven-year-old insisted. “I’m learning how to run the machine.”

In such moments, Lynne was surprised at the strength she drew from her daughter. She needed it. Her grief could leave her feeling drained. One day she found herself crying into the soil as she gardened.

But Lynne and Richard were determined that sadness would not define their lives. For a long time, they didn’t have a TV in their house—they wanted the family to talk when they were together, and for the children to build forts, learn to sew, be creative. They had painting nights, creating portraits of one another. There were cooking contests, too. Richard and Lynne made sure to spend one-on-one time with each kid. Richard traveled with Luke to Japan, with Rion to the Grand Canyon, with Jessica to Italy, and with Jenna to England. Lynne took trips with the children to Brazil, England, and Guatemala. There were themed birthday celebrations: a James Bond party for Richard, where everyone was armed with Nerf guns, and one for Lynne where Richard dressed as the artist Bob Ross and the guests painted “happy little clouds.” Richard coached the kids’ hockey and soccer teams. He built harps and lyres from scratch, and Lynne played them.

Every day, Richard left for work at 5 a.m., while the children were still in bed. He returned around six at night. The family joked that they could hear him coming from half a mile away in his rust-bucket Isuzu Trooper with the bad muffler and a hole in the passenger footwell. When he wasn’t seeing patients or in surgery, Richard was in the lab. On Saturdays, Luke would go there with him. Sometimes the other kids joined. They liked to refill the communal candy jars and visit the mice used in experiments.

It seemed a wonder to the lab’s staff that Richard squeezed so much into a day. When they began using email to communicate, they received messages from him time-stamped three or four in the morning. “Why don’t you sleep sometime?” a colleague replied once. Indeed, Richard slept little. At night his mind kept running through the mysteries of his daughter’s disease.

Richard had read that it took 10,000 hours—the equivalent of working full-time for about five years—to achieve expertise in a subject. He believed it. In 1995, he began flying to conferences about kidney disease, where he talked to the few doctors who cared for patients like Jenna. Medicine was getting no closer to finding a treatment.

That year the owner of a ranch where Richard and Lynne’s children took riding lessons offered to host a fundraiser for kidney disease research. The family organized Dressage in the Heartland, which featured riding events, fiddle music, and bowls of chili. After raising upwards of $10,000 for the National Kidney Foundation, they held the event again the following year. There are hundreds of kidney ailments, however, and the foundation didn’t allow the money the family raised to be earmarked for the research of dense deposit disease. (The foundation said it now allows monetary gifts to be dedicated to specific conditions.)

Richard and Lynne ran into more disappointment during a visit to the University of Minnesota in early 1997. A specialist they consulted was blunt. “Nobody is looking at this disease,” he told them. “And barring something unforeseen, nothing will be done in the next twenty years.”

It was a four-and-a-half-hour drive back to Iowa City. In the car, Lynne brought up what the doctor had said. Maybe they would have to be that unforeseen something.