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This article was adapted from David Epstein’s Substack newsletter, “Range Widely,” and references the story “The DIY Scientist, the Olympian, and the Mutated Gene” that he wrote for ProPublica in 2016. That story also became an episode of “This American Life.”
Jill Dopf Viles — self-taught genetic detective, the central figure in the most interesting story I’ve ever reported and my friend — passed away last month in Gowrie, Iowa, at 50.
I’m heartbroken that Jill did not live to see the publication of her book — “Manufacturing My Miracle: One Woman’s Quest to Create Her Personalized Gene Therapy — which came out last week. I know how much she treasured the fact that she would soon be able to call herself “author.”
Here is a paragraph from her book:
“Every gain I’d made in learning more about my genetic disease had involved some type of deception — to do my family’s underground blood draw in 1996 required that phlebotomy supplies be lifted from a hospital and a nurse secretly visit our home; gaining journalist David Epstein’s interest began with a wild exaggeration in my email subject line: ‘Woman with muscular dystrophy, Olympic Medalist—same mutation’; and I’d adopted the lexicon of a research scientist to gain a client rate for Priscilla’s genetic testing (the cost for clients was half what was charged to individual patients).”
If I was deceived, I’m grateful for it. In that paragraph, Jill is describing just a bit of the effort that went into figuring out that she had a rare form of muscular dystrophy called Emery-Dreifuss, which causes muscle wasting, and also an even rarer form of partial lipodystrophy, which causes fat to vanish from certain parts of the body. Jill had been told for years that she didn’t have either of these, never mind both.
After my first book, “The Sports Gene,” came out in 2013, I was on “Good Morning America” talking about genetics, and Jill happened to be within earshot of her TV. “I thought, oh, this is divine providence,” Jill later told me. So she sent me that email with the provocative subject line. She followed up by sending me a batch of family photos and a bound packet outlining her theory: that she and Canadian sprinter Priscilla Lopes-Schliep — bronze medalist in the 100-meter hurdles at the 2008 Olympics — shared a genetic mutation.
On the face of it, this seemed ridiculous. One could hardly find a picture of two more different women. Take a look at this page from the packet Jill sent me:
The packet outlined in granular detail why Jill thought, just from looking at pictures of Priscilla, that the two women shared a genetic mutation that caused the same fat wasting, but because Priscilla didn’t also have muscle wasting — quite the contrary — her body had found some way to “go around” muscular dystrophy.
If Jill was right, she thought, perhaps scientists could study both of them and figure out how to help people with muscles like Jill’s develop muscles a little closer to Priscilla’s end of the human physique spectrum. Jill was sharing all this with me because she wasn’t sure how best to contact Priscilla and hoped I would facilitate an introduction.
Jill’s hypothesis struck me as unlikely, to say the least. But her presentation in the packet was so interesting, and her knowledge of the underlying genetics and physiology so thorough, that I felt her idea deserved a hearing. I reached out to Priscilla; she agreed to meet Jill, and after comparing body parts in a hotel lobby, Jill convinced her to get a genetic test. Long story short, Jill turned out to be right. She and Priscilla had a mutation in the same gene, albeit at neighboring locations.
The discovery led Priscilla to get urgent care for a serious health condition that had previously been overlooked because of her obvious fitness. Jill and I shared this story in an episode of “This American Life” in 2016 — which was rerun last week in her honor.
After that story ran, Jill’s genome became the subject of research, exactly as she’d hoped. Today, in a lab in Iowa, there are fruit flies known as “Jill” flies, because they have been engineered to carry her same mutation. As expected, Jill flies have severely limited mobility. But just recently, a scientist conducted a genetic experiment in which she increased the production of a particular protein in the Jill flies. Suddenly, they began to move like normal fruit flies.
The breadth of life contained in Jill’s new book is incredible.
She was a child the first time she heard a doctor discussing her own death with her mother. The indignities of adolescence and young adulthood that she endured were legion, starting with spontaneous falls in school, followed by kids looping their fingers around her arms and legs and asking if her mother fed her.
Jill’s condition accelerated with puberty, so the bodily changes that are confusing for any teenager were absolutely harrowing for her. Almost overnight she lost the ability to do things she loved, like skate or ride a bike.
At one point in her early teen years, a doctor ordered pictures of Jill’s posture, which forced her into a strange and humiliating photo session that hadn’t been properly explained beforehand:
“I had seen these photos before — a stark, frozen moment of a patient’s greatest vulnerability, the body positioned in a way nature and the photographer dictate, all except for the eyes. The eyes cannot be manipulated or coaxed. It is often said that the eyes are the windows to the soul. Maybe that is why black bars are printed over the eyes of the patient. Perhaps this is done to protect the patient’s anonymity, but I wonder if it isn’t really done to shield the peering eyes of the medical community from the humanity before them.”
In college, when Jill rushed a sorority, she couldn’t keep up with fellow pledges as they walked across campus. When a man who had been following the group saw Jill lag behind, he crept up and exposed himself to her. “I had been targeted because I was weak,” Jill writes. “I had assumed the plight of the injured gazelle, the one separated from the herd with a lame leg. … Any normal eighteen-year-old would bolt for safety, but I remained glued in place, the shame of my predicament filling every cell of my being. I was trapped alongside a simple street curb, something I couldn’t climb, no matter my desperate need to get away.”
But even more powerful in “Manufacturing My Miracle” than the candid humiliations are the scenes of family, love and hope.
Jill’s wry humor comes through when she writes about dating. At one point she used a Match.com profile to come up with the estimate that at least 1% of men are open to dating a woman with a disability. In typical Jill fashion, rather than lamenting the other 99%, she was thrilled that this meant that if she got her profile in front of enough men, she could have a new date every week of the year.
Jill eventually met Jeremy, the man she would marry. She writes about aspects of their relationship with such tenderness that I frequently paused after a passage just to sit and think about her words for a few moments. “I recalled our first weeks of dating when Jeremy made a heartfelt observation,” Jill writes. “Previously, as a single man, he often went an entire weekend without saying even one word aloud. It was such a contrast to the way I lived my life. I was known to strike up a conversation with the caller of a misdialed number, banter with strangers in a bookstore, or chat freely with the checkout clerk at the grocery store.”
In their second month of dating, Jill and Jeremy attended the gigantic Iowa State Fair. Here’s how Jill remembered it:
“I lived ten years in a single night, clutching carnival booty tightly to my chest as Jeremy walked up and down the rows of carnival games, taking entirely too long to decide which to go for. ‘What’s taking you so long?’ I asked.
‘I’m trying to find one you can play,’ he said.
My eyes filled with tears.”
After our “This American Life” segment came out in 2016, Jill became a bit of a celebrity among people struggling to figure out their own mysterious illnesses.
She developed into a sort of clearinghouse for people with undiagnosed muscle conditions seeking help. She kept in constant touch with a man in rural Pakistan who sent her a video of his struggle to rise from his knees following daily prayers at a local mosque. She navigated immense cultural and logistical barriers to help him get a genetic test. “She was a worldwide person,” her mother, Mary, told me recently, “just out of her little office in Gowrie, Iowa.”
Jill became so fluent in genetics that she was perceived as a scientist when she called labs, lab supply companies or pharmaceutical companies. Toward the end of her life, that fluency allowed her to obtain an experimental gene therapy that isn’t actually available for nonresearch purposes. She knew the drug was both promising and potentially deadly, and with a loving husband and college student son in mind, she was hesitant. “I no longer had a fear of death,” Jill writes in her book, “but this did not imply that I wanted to die. My wish was the opposite, but without a life partner and a child, I wouldn’t need to consider anyone’s viewpoint but my own.”
As always, she did consider others, and at the time of her death she had not gone through with this final experiment.
In April, Jill and Jeremy drove to Chicago to attend a wedding. Mary shared photos with me, and it’s the same Jill I began talking to in 2013: dressed impeccably, every strand of blond hair in its right place. She took great care and pride in her appearance. Looking at the pictures, it is extremely hard to imagine that Jill was less than two months away from dying.
Her brother Aaron, afflicted with the same condition, had passed away in 2019. Four of the five siblings inherited the mutation, though the disease severity differed — likely moderated by other parts of the genome. In “Manufacturing My Miracle,” Jill writes of the difficult decision regarding whether or not to have a child, given the 50-50 chance of passing down her mutation. Her son, Martin, did not inherit the mutation.
Shortly before the “This American Life” episode ran, Jill got nervous and wondered if we should hit pause on it. She worried that listeners would only focus on her decision to have a child and criticize her for being selfish. We talked for hours about the potential outcomes. Jill and I had been in touch for three years by that time, and we were going to stick together as friends no matter what criticism came. She decided we should forge ahead. Fortunately, the response was the most overwhelmingly positive of any story I’ve ever been involved with.
Jill and I met up in Chicago after that so I could watch her give an invited lecture. We kept in touch over the years. Sometimes we went months without talking before a burst of calls back and forth.
By this spring, it had been an unusually long while since we last talked. We emailed, but no phone calls. Mary told me that Jill had recently bought a new dress that she planned to wear when giving talks about her book. At a visitation before the funeral, she’ll be wearing her book dress.
Mary added that, a few weeks before Jill passed, she caught pneumonia and never recovered. Mary told me her voice was weak. “I kept telling her to call you,” Mary said. “But she kept saying: ‘I want my voice to be stronger. I want my voice to be stronger before I call David.’”
I’m crestfallen that I didn’t hear from her again, but I think her voice was plenty strong.
This article was produced for ProPublica’s Local Reporting Network in partnership with The Bangor Daily News. Sign up for Dispatches to get stories like this one as soon as they are published.
Off a two-lane stretch of U.S. Route 1 in rural Caribou, Maine, sits a white ranch-style house that’s been consumed by weeds and vines.
The house was once the fulfillment of a dream. The owner had purchased it in 2006 through a federal mortgage program designed specifically for people like her: impoverished, first-time homeowners who live in the most rural parts of the United States. The loan, which came directly from the U.S. Department of Agriculture, required no down payment.
But things started going wrong from the day she moved in. First, the basement flooded. Then the furnace stopped working. As major repair costs accumulated over the next six years, the woman’s health deteriorated until she was forced to leave her job as a manager at Kmart. Her disability check was not enough to cover medical expenses and the upkeep required for the house — let alone the $855 monthly mortgage.
So in 2012 she drove to a USDA office 20 miles away and tried to give the house back. She said staff there would not accept her keys, telling her instead to call a toll-free number for help, as agency protocol requires. She left a message and did not hear back. She stopped paying her mortgage and moved out.
Her dream home sat abandoned for more than a decade.
USDA guidance says the agency should act quickly when borrowers fall behind on payments “to minimize any potential loss to the Government and to the borrower.” A prompt sale keeps the government from having to pay the legal and administrative costs associated with foreclosure down the road and may protect the borrower from incurring a major blemish on their credit history.
But that did not happen. Rather, 13 years passed before a sheriff’s deputy knocked on the door of the woman’s public housing apartment in May and served her with foreclosure papers on the now dilapidated ranch home that’s been overtaken by squatters. The government’s delay hurt the value of its investment and left the woman with a bill far greater than the cost of the loan she initially took out — with additional interest and other fees that had accumulated over those years.
The woman, now 68, declined to be interviewed, but her attorney, Tom Cox, said she allowed him to share her experience on the condition that she not be named to protect her privacy.
Since March, the USDA has filed 56 foreclosures in the federal court system against properties purchased with a rural development mortgage, also known as a Section 502 direct loan. All but one were in Maine. The borrowers have been in default for an average of nearly nine years.
As in the case of the Caribou homeowner, the USDA’s delays in those cases have resulted in borrowers racking up more debt because of the interest and fees that piled up in the intervening years, according to a Bangor Daily News and ProPublica examination of the foreclosure cases and interviews with former USDA officials and legal experts.
On average, borrowers in the 55 Maine cases owe $110,000 more than they would have had the agency moved to take possession of the properties when they first defaulted, the Bangor Daily News and ProPublica found. This includes what the USDA calls “preservation and inspection” fees, a broad category on the foreclosure filings that can include home repairs and yard maintenance, among other things.
Borrowers who can’t pay risk having the government garnish their wages or federal benefits such as Social Security. The Caribou woman had her disability checks garnished six times since 2015 to offset her debt before the USDA even foreclosed on her property, according to her lawyer. The best way to keep the government from garnishing federal benefits is to file for bankruptcy, attorneys said.
“It really undermines the concept of giving access to homeownership to a population who might not otherwise have been able to afford it,” said Rhiannon Hampson, former USDA rural development director for Maine who stepped down in January before President Donald Trump was inaugurated. “The irony, with all of these fees piled on, is that they can’t afford to get out of it.”
The recent wave of foreclosure filings in Maine underscores the government’s failure to monitor a mortgage program that since its founding in 1949 has poured tens of billions of tax dollars into giving the poorest Americans a shot at homeownership.
The USDA does not publicly report how often it files foreclosures. U.S. Rep. Chellie Pingree, a Maine Democrat and member of a House appropriations subcommittee overseeing the USDA’s direct loan program, has proposed language in the House agriculture appropriations report for the 2026 fiscal year calling on the agency to regularly report the number of foreclosures and abandoned properties related to the direct loan program. The bill awaits a vote before the full House of Representatives.
The USDA regularly filed foreclosures in Maine prior to the coronavirus pandemic but has rarely done so in recent years, according to Richard H. Broderick Jr., a Maine attorney with whom the agency had contracted to file foreclosures until 2022. Kevin Crosman, the Maine attorney now filing foreclosures on behalf of the USDA, would not comment on why the agency started doing so again.
Reporters visited 12 of the 55 homes in the Bangor Daily News’ core coverage area in May. At least five appeared to be abandoned and in disrepair — with windows boarded up or a sign affixed to the door saying it was being cared for by a New York company — raising doubts that the government will recoup its investments.
The USDA is supposed to take custody of properties purchased with a Section 502 direct loan and begin the foreclosure process when the homeowner becomes incapacitated, dies or has abandoned it, according to the agency’s handbook. Otherwise the properties may languish and lose value.
It really undermines the concept of giving access to homeownership to a population who might not otherwise have been able to afford it.
—Rhiannon Hampson, former USDA rural development director for MaineAgency guidelines do not specify how soon the government should step in after a loan falls into delinquency, but under federal law, lenders cannot foreclose on a property until borrowers have been in default for 120 days.
Nearly a fifth of the USDA’s 159,208 Section 502 direct loans in its active national portfolio — 30,496 — were delinquent as of March, according to internal agency data obtained by the Bangor Daily News and ProPublica. That rate is double what a 1993 internal agency report said was acceptable. But neither the USDA nor the White House would say why the agency is focusing on foreclosures in Maine. Vermont is the only other state in which the USDA has filed a single foreclosure, according to federal court filings.
The foreclosures started just before Trump’s Justice Department sued the state of Maine in April over its inclusion of transgender athletes in girls’ sports, part of a larger spat between Trump and Maine Gov. Janet Mills. The White House would not say whether the foreclosures are connected in any way to those ongoing conflicts.
The Trump administration is seeking to eliminate the 76-year-old rural homeownership program in the White House’s budget proposal for the 2026 fiscal year. Some of his predecessors, including Barack Obama and George W. Bush, have also sought to cut back the $880 million direct mortgage program, which has bipartisan support in Congress.
A USDA spokesperson said the Trump administration is in the process of reviewing the loans to “understand the magnitude of the problems it has inherited.” The agency noted that in Maine alone, more than 800 properties are considered delinquent and nearly 400 homes are being tracked for foreclosure. The USDA did not respond to additional questions.
“Hopelessly in Debt”In 2013, months after the Caribou woman had abandoned her property, she received a letter at her new residence from the USDA informing her that she had to pay the government $22,000 in missed mortgage payments and late fees or she’d lose the Caribou home, said Cox, her lawyer. He said she did not pay because she did not want the house anymore. The USDA sent her nearly a dozen letters between 2014 and 2015 claiming foreclosure was imminent, but a decade passed before she was served with foreclosure papers this spring.
A sign on the front door says the property is being maintained by a New York City company, which did not return calls seeking comment. A green tarp stretches across missing sections of the roof. Inside, piles of garbage and feces litter the floor.
The dilapidated state of the house a woman bought with a USDA mortgage in Caribou, Maine (Courtesy of Tom Cox)A real estate broker who inspected the home in June with Cox estimated the value of the house to be around $40,000, a steep depreciation from the 2006 purchase price of $144,000.
During the time since she abandoned the property, what the woman owes USDA continued to balloon, Cox said.
His client now owes the government $393,463, according to court documents — nearly 10 times what the home is worth. Nearly 60% of that comprises interest that accumulated after she defaulted, as well as $91,304 in “preservation and inspection” fees.
“If the USDA had dealt with this back in 2012, they might have gotten most or all of their money back by selling the home” before it deteriorated, Cox said. “They’re not going to collect it now. It’s a huge waste of government resources and money to let this happen.”
Other USDA borrowers simply continue living in their homes long after they default on their loans, accumulating more debt with each passing year that the government does not move to collect.
It’s a huge waste of government resources and money to let this happen.
—Attorney Tom CoxChristine Ogden had stopped paying the $465-a-month mortgage for her blue saltbox home in the coastal Maine town of Searsport in 2013, according to court documents. She said she told the USDA at the time to take her home after the agency threatened her with foreclosure if she did not pay.
But it took the government until 2019 to attempt to foreclose upon her property. The case was dismissed in 2020 amid the coronavirus pandemic. Five years later, in April, she received a summons to appear in federal court to start foreclosure proceedings again.
Ogden now owes $203,787 on what had been a $66,200 mortgage, according to court documents. Half of her debt comprises interest that accumulated after she defaulted, as well as other fees she would not have had to pay had the USDA addressed the delinquency sooner, an analysis by the Bangor Daily News and ProPublica found.
Ogden, who has lived rent-free in the house for 12 years, says she is unable to pay the burgeoning debt and does not know what will happen. The foreclosure will hurt her credit, making it harder for her to get another loan or find rental housing, she said.
“I'm 59,” Ogden said. “I’ll be homeless, basically.”
Little Government OversightThe owners of another property, in Norridgewock in central Maine, also stopped paying their mortgage — and moved out of the house — years before the USDA foreclosed on the home this spring, court records show. The owners have not appeared to live at the property since at least 2014, according to property tax records, and defaulted on their loan in 2019 — but the government did not file for foreclosure until April.
The owners, it turned out, were violating USDA rules by renting out their home. The tenant, who answered the door when a reporter visited in May after the foreclosure was filed in federal court, would not share his name but estimated that he has paid $100,000 in rent to the owners during the 12 years he said he has lived there. USDA guidelines allow borrowers to rent their homes for up to three years, and only under very narrow circumstances.
Properties purchased under the 502 direct loan program are supposed to be the borrower’s permanent residence and not meant to generate income, according to USDA guidelines. Homeowners can rent out their properties only due to certain life events such as if their families outgrow their current home or if they are moving for a job. But the borrower must still pay the mortgage every month.
The USDA says the owners of the Norridgewock home owe the agency $276,191. The homeowners live in Tennessee, according to foreclosure summons and other court records filed this year by the USDA; they did not respond to calls made to phone numbers listed under their names.
USDA staff based in Maine who once were in close touch with borrowers when they ran into financial trouble now have little to no oversight of Section 502 loans. That’s because a major restructuring in the 1990s eliminated many of the county offices that had managed all aspects of the loans and centralized the servicing of these loans to an office in St. Louis, said Leslie Strauss, a senior policy analyst for the Housing Assistance Council, a Washington, D.C.-based nonprofit focused on affordable rural housing.
These changes came on the heels of an internal study in 1991 concluding that centralizing the administration of these loans would result in better service and a lower delinquency rate of about 10%, according to a 1993 report by the U.S. Government Accountability Office. More than three decades later, the delinquency rate for Section 502 direct loans has nearly doubled to 19%.
Hampson, Maine’s former USDA rural development official who now leads economic development for the Gulf of Maine Research Institute, said she had been pushing the agency to allow local staff to regain oversight of borrowers’ financial situations “so that we can go out and monitor what’s going on, so that we aren’t caught by surprise.”
But her effort did not gain traction, Hampson said.
As the foreclosures accumulated in Maine in recent months, the USDA website published an advisory directing struggling Maine borrowers to call the St. Louis office for help. But fewer staff members are available to respond after Trump’s recent cuts to the federal workforce.
As of early May, 1,536 employees — nearly a third of the rural development office — had taken the buyout, according to USDA documents outlining the results of the Trump administration’s two financial incentive offers to quit. Of those, 197 worked in the St. Louis office.
“We can’t afford failure,” Hampson said of the long-delayed foreclosures leading to insurmountable debt. “The onus is on the government to make sure that we’re providing the right kind of safety nets to prevent this sort of thing from happening.”
Michael Shepherd, Sasha Ray and Paula Brewer of BDN contributed reporting. Mariam Elba of ProPublica contributed research.
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