Amy Frohnmayer, graduate student, practitioner of Western psychology and Eastern contemplative disciplines, seeker, sufferer, healer, daughter, sister, friend, and ardent celebrant of the daily sacrament of distance running, met Alex Winn in a manner emblematic of her deeply lived, determinedly happy, tragically abbreviated life.

Early on the evening of November 1, 2013, Amy stopped at her favorite Thai restaurant in Bend, Oregon, to pick up dinner. There was an air of novelty to the early darkness, an edge of heightened awareness in people’s faces, that Amy might have found stimulating. She made a point of paying attention to small details and ordinary moments that others took for granted. Back in college at Stanford University, for instance, she had written a letter to her father describing a cloud formation in the sky. She noted that all the other students had just hurried to class, pinched-faced and intent, oblivious to the glorious show taking place above them. Amy alone had stopped to look.

Now, at the restaurant, she orders Pad See Ew to go and a glass of Pinot Gris to drink at the bar while she waits. She’s not supposed to drink alcohol, but Amy permits herself the occasional modest indulgence that, for her, yields outsized pleasure. She settles onto a stool at the L-shaped bar—a lissome, long-limbed, blond woman of 26 who emanates an infectious trust. During Amy’s first days in Bend, a woman who met her at the gym spontaneously offered Amy a job in a paper store.

Amy venturing off-road on vacation in Washington, 2015. Frohnmayer family

Amy opens a book—she’s in a master’s of counseling program at Oregon State University-Cascades in Bend—and takes a sip of wine. There’s only one other customer at the bar, a man around Amy’s age, sitting across from her, eating dinner. They both look up at the same moment. Their eyes meet and, by the evidence of what is about to transpire, Amy catches a bolt, an intimation; a rush perhaps similar to the commingled hit of release and connection that sings through her blood on her long runs along the Deschutes River. She gives the man a warm smile, and says hello.

“That was all it took,” Alex Winn, then 32, recalls. “There was this immediate, deep connection. We started to talk. After a few minutes I moved around to the stool next to her. Amy’s food came, but she never looked at it. We talked for hours.”

From that first meeting on, the two never stopped talking to each other. Alex was a clinical pharmacist at St. Charles Hospital in Bend. A native of Portland and an avid mountain biker, he’d been drawn to the city in central Oregon by its bountiful outdoors. Alex climbed at Smith Rock State Park, paddled rapids of the Deschutes River, and skied at Mt. Bachelor. He also ran, but mostly to stay in shape for other sports.

Amy, by contrast, was a runner who also skied and hiked and paddled. She covered 30 to 40 miles a week at an eight-minute-per-mile pace, ran half marathons and other road races, and had finished a marathon. She had converted several friends into runners and—perhaps the most telling indicator of her devotion—if she didn’t run on a given day, she didn’t feel like herself. Although a good natural athlete with an elastic, light-footed stride, Amy downplayed competition and performance. She took Alex out on her favorite trail along the river, and when he fell behind, which was often, she would tactfully slow down so they could run together. Pretty soon they were doing everything together. When it became apparent that something serious was building, Amy called for a meeting.

“We sat down and in a calm, matter-of-fact way, she told me about her family,” Alex says. “She explained that one of her older sisters had died at age 12, and the other at age 24. She told me that she, Amy, had the same disease. She said I should google Fanconi anemia. The subtext was that if I knew what I was getting into, I might want to get out now.”

The happy couple in Hawaii (left); Ailing but still finding plenty of joy in life, summer 2016 (right). Frohnmayer family

Fanconi anemia is named for Dr. Guido Fanconi, the Swiss pediatrician who identified the condition in 1927. FA is an inherited anemia, very rare, occurring in an estimated 1 out of every 350,000 births. Annually, only about 31 babies in the U.S. are born with the disease, which is characterized by fatal bone-marrow failure, leukemia, and solid-tumor malignancies.



As a recessive-gene disorder, FA is especially insidious. When two carriers of the gene mate, they are almost always unaware they have it. They don’t suffer from the disease themselves, because each carries only half of FA’s genetic code. It’s as if a diabolical fate assigns half of the genetic code to an unsuspecting individual, and then brings that individual together with a mate who, also unknowingly, carries the other half. There is a 1 in 4 chance of the couple’s offspring developing FA.

Most FA patients develop low blood counts by the time they are 10, putting them at high risk of developing acute myeloid leukemia (AML). By early adulthood the risk of developing cancer is extremely high. The median lifespan for people with FA is 33 years. There is no cure. Bone-marrow transplants can prolong life by decades, but carry deadly risks. Due to an inability to repair DNA, FA patients can’t tolerate chemotherapy, so treatments that work for other cancers are not options.

“FA is a DNA-repair disease,” explains Lynn Frohnmayer, Amy’s mother. “Tons of little mistakes occur constantly in our bodies. But healthy bodies, these miracle machines, are constantly and continually correcting them, either eliminating the flawed cells or else making them whole. But with DNA disrepair, this process breaks down. Healthy cells die and bad cells replicate and that leads to leukemia.” Indeed, as FA advances, the bone marrow loses the capacity to produce any type of blood cell: oxygen-bearing red cells; protective white cells; or clot-producing platelets.

“For a parent, having a child with FA is excruciating,” says Grover Bagby, M.D., a retired hematologist and founding director of the Knight Cancer Institute (KCI) at Oregon Health & Science University (OHSU) in Portland, who helped treat two Frohnmayer sisters. “It’s not a question of if the disease is going to manifest but when.”

That dreadful day inevitably arises by early adulthood. Thus, on top of its physical ravages, FA presents a brutal emotional challenge. The parents of an FA child know she is living on borrowed time, under an indeterminate but unequivocal death sentence. And sooner or later, the child knows it, too.

Amy was a baby in 1988 when People took this Frohnmayer family photo. John Storey

On the beach in Manzanita, Oregon, one summer day in the early 1980s, Lynn Frohnmayer looked at her three young children playing on the Pacific Ocean’s edge and thought that she was the luckiest woman in the world.



Lynn and Dave Frohnmayer, her husband, had married in 1970, in Grants Pass, Oregon, although both had been pursuing glittering careers in and around the nation’s capitol prior to that. A magna cum laude graduate of Harvard, Rhodes Scholar, and University of California at Berkeley law school graduate, Dave was working as a staff assistant in the Department of Health, Education, and Welfare (HEW), writing speeches for Secretary Robert Finch and later for Elliot Richardson during the Nixon administration. Lynn Johnson—BA from Stanford, Peace Corps volunteer in West Africa, master’s degree in psychiatric social work from Smith College—was working at a mental health clinic in Virginia. Both were natives of southern Oregon, Lynn from Grants Pass and Dave from Medford, but except for a brief encounter several years earlier, they wouldn’t meet until eight years later in Washington, D.C.

“I was intimidated at first,” Lynn recalls. “Dave was very, very smart, but also just a very good, kind, down-to-earth man, a slippers-and-newspaper kind of guy, who wasn’t impressed with himself at all. He loved politics and I loved becoming part of his world in Washington. I remember helping to host Elliot Richardson—HEW Secretary at the time—at Dave’s apartment for cocktails. Our lives were intensely busy and wonderfully exciting.”

The couple married a year after meeting. Before the Watergate scandal hit, the University of Oregon recruited Dave to serve as legal counsel for its president and to teach at its law school. Lynn was offered a caseworker position in the state’s Children’s Services Division. “We both loved the outdoors and we both loved Oregon,” Lynn says. “We decided to move back home.”

It was an auspicious time for the state. “The Oregon Way” was taking shape, with nationally recognized advances in land use, environmental protection, recycling, and urban planning. A remarkable core of political leaders emerged, centrist Republicans such as Senator Mark Hatfield and Governor Tom McCall, who blended progressive activism and conservative restraint. Dave entered the political arena with a similar philosophy, eventually serving three terms as a state representative and three terms as Oregon attorney general and narrowly losing the 1990 election for governor. He then left politics to serve as dean and professor at the University of Oregon School of Law and, from 1994 to 2009, as the university president. Both visionary and Pragmatist, with a gift for finding common ground, Dave defined himself as a “moderate-to-liberal Republican.”

During the 1970s, for her part, Lynn was on a team that implemented an innovative plan to move children out of foster care and into permanent homes. It drew national attention, and Lynn presented workshops around the U.S. When the couple’s own children came along, Lynn put her career on what she thought would be a hold, devoting her energies to Kirsten, Mark, and Katie, born from 1973 to 1978. “I loved being a mother,” Lynn says. She loved reading to her kids, loved helping them develop into healthy, bright, well-adjusted children, heirs to and exemplars of “The Oregon Way” that her husband was championing. “On that day on the beach, I remember watching my children play and thinking how blessed I was,” Lynn says.

It’s now a cold gray afternoon in mid-January 2017, and Lynn is sitting at the dining room table of her house in Eugene. Beyond the wide picture windows, a brief stab of sunshine turns the fairways of the Eugene Country Club an almost aching shade of green. Giving a smile at once rueful, determined, and gently self-mocking, Lynn, now 74, says, “I thought I had the perfect life.”

Not long after that golden day, on July 5, 1983, 10-year-old Kirsten collapsed with a high fever. This was clearly more than a normal childhood illness, and Lynn rushed her daughter to the pediatrician. “Kirsten’s blood counts were extremely low,” Lynn says. “The doctor suspected leukemia.”

The lab results came back: no leukemia. Lynn wept with relief. “But the doctor says, ‘Hold on. Kirsten’s bone marrow is barely producing any kind of blood cell at all,’” Lynn remembers. “‘This could be something worse than leukemia.’”

Worse than leukemia? The doctors conducted further tests. Kirsten had a rare, inherited disease called Fanconi anemia. She was unlikely to live to adulthood.

Lynn reeled from this catastrophic news, but steeled herself to hear more. How about Mark and Katie? she asked. Weren’t they cursed with the same 1 in 4 chance of having the disease? The physician advised against testing the two younger children. He pointed out that they were robust, bursting with health. They didn’t show any symptoms.

But Lynn was adamant. The tests were performed and Lynn’s fears confirmed: 5-year-old Katie also had FA. Both Frohnmayer girls were, in effect, doomed. Their mother’s wonderful life had spiraled into a nightmare.

Amy Frohnmayer never endured a formal, sit-down meeting at which her parents announced her condition and fate. FA was just always part of her life. She and Kirsten and Katie, her two older sisters, had the disease. Her older brothers—Mark, born in 1974, and Jonathan, born in 1985—did not (although FA afflicts boys and girls equally). Just the luck of the draw.

In 1985, a few years after Kirsten’s and Katie’s diagnoses, Lynn and Dave started an FA family support group. Then in 1989 they founded the Fanconi Anemia Research Fund (FARF) to learn about the science of the then-little-known disease, and share information and support with other FA families around the world. Dave served the foundation as its high-profile fundraiser and big-picture strategist; he was cofounder of the National Bone Marrow Donor Registry. Lynn worked at home taking care of the kids and running the support group and research fund. She helped plan scientific symposia and family meetings, evaluated grant proposals, and wrote articles for the newsletters distributed to the international FA community, which she had largely organized. She had quickly made herself into an expert on the disease.

“Lynn knows more about FA, its biology, stages, mechanics, and workings, than all but four or five of the clinicians and researchers on our staff,” says Dr. Bagby of the Knight Cancer Institute.

Lynn and Dave also met with reporters who were eager to tell the Frohnmayer story: three doomed daughters of a gifted golden family. In 1988, People magazine ran a feature following Lynn and Dave as they traveled to Nova Scotia searching for a distant relative who might possess the genotype to be a bone-marrow donor for the girls.

Prior to that unsuccessful mission, Lynn and Dave had hoped that a fifth child would provide the miracle match for one of their daughters. In 1986, when Lynn became pregnant with Amy, in utero tests indicated that the fetus was not only FA-free but also possessed the exact genetic donor match for Katie. “I thought I had won the lottery,” Lynn says.

This didn’t mean there was a cure for Katie, but there was hope, a chance to gain many more years of life—years to savor and treasure as a family, years during which the research could continue, supported and prodded by FARF, perhaps ultimately producing a moonshot cure. And all that, of course, was only a bonus; another baby, FA-free, would be the main gift.

Amy Elizabeth Frohnmayer was born on February 25, 1987. Weeks passed. The phone rang at the Frohnmayer house and Lynn picked up. It was the pediatrician. “There’s a problem,” he said. They needed a new sample of Amy’s blood—the cord-blood cells they had tested were clotted.

Lynn’s heart dropped. “I already knew the real reason they wanted a retest,” she recalls. “Mother’s intuition.”

The retest was done, and her intuition was correct. Amy had FA after all.

Lynn and Dave staggered but kept on going. “One step, then another,” Lynn says. “We really didn’t have a choice.”

Now there were three girls in one family living with a death sentence. Three girls having their blood counts continually monitored and their bone marrow regularly biopsied. But there were also three girls—and two boys—who were outstanding students at school, taking piano lessons, playing tennis, becoming expert downhill skiers, going on overnights with friends, and baking cookies. “I remember a profoundly happy and loving childhood,” says Jon, now 32. “My mom and dad did an amazing job keeping us level.”

But behind everything, shadowing every moment, was the fact of FA. “The disease was just a given for our family,” Lynn says. “We were always talking about it around the house. This is why we go to meetings, why we’re talking to doctors. FA was just a part of our life.

“So Amy always accepted it. She always feared the possibility that she had limited time. We always emphasized that we were working on it, making progress, and truly hoped that we’d be able to greatly extend her life. New ideas were coming around, like improved bone-marrow transplants and gene therapy. There was no false hope for a cure, but there was hope. Amy knew the reality and accepted it. She watched her sisters get sick and die.”

Katie was the first to go, in 1991, when she was just 12 years old. She was preleukemic but never had a bone-marrow transplant. In 1986 when she really needed one, no transplant center would accept her because she did not have a matched sibling donor. She died from a very rare complication of FA called Moyamoya disease, which led to a series of strokes. Amy was only 4, but was very close to Katie, and deeply grieved her loss.

Lynn and Dave couldn’t give in to their grief. They had two surviving daughters—Kirsten and Amy—and the race was still on. Every day counted, every consultation with a physician, every meeting of FA families to share information, every research paper, every blood test: Some bolt might yet save the two girls, or if not save them, buy them more time—another month, another year. And every day counted in a family sense—every shared dinner, every ski trip, every bike ride, every moment just playing card games or hiking to the top of Mt. Pisgah.

As she grew older, Amy paid attention to her parents’ sense of urgency, and their resilience. If her mother and father could squarely face the affliction visited on their family—find a way to value life instead of turning against it—then Amy could do the same. The trick, the task, the challenge, the girl realized with precocious insight, was to be present in the moment; to accept with clear eyes the good or ill, grace or pain, that each moment delivered. Unlike most people on the planet, Amy couldn’t deny the fact that her supply of moments was likely limited.

“In Amy’s situation she might have mourned her fate and become extremely depressed, but she took the opposite tack,” Lynn says. “She felt deeply grateful for what she did have. She couldn’t waste a minute. Max out on life!”

But how, exactly, do you go about that? Amy knew that she possessed a brief, dwindling amount of time on earth. She eventually decided to spend a significant chunk of it running.

Amy with her parents. Frohnmayer family

Neither her mother nor her brothers precisely recall when Amy started to run. Running culture surrounded the family, in Oregon in general, Eugene in particular. Amy’s paternal grandfather, Otto Frohnmayer, had been friends with Bill Bowerman in Medford when Bowerman was beginning his teaching and coaching career at the town’s high school. Later, when Bowerman started designing running shoes as a cofounder with Phil Knight of Blue Ribbon Sports, the early incarnation of Nike, Bowerman, according to family legend, tried to persuade Otto to invest in the fledgling company. Otto declined, costing the Frohnmayer clan a potential fortune, but supplying a rueful family joke. (Years later, as U of O president, Dave forged close bonds to Knight and Nike. During the Asian sweatshop controversy of the 1990s, Knight stopped donating to the university, but resumed when Dave brokered a compromise. Around the same time, Dave engineered the university’s shift from a reliance on public funding to private donations, which ushered in the era of Knight’s major contributions to his alma mater. Knight remains a friend of the Frohnmayer family; in 2016 he donated $10 million to FARF.)



In Eugene, you could go to track meets at Hayward Field and run on Pre’s Trail next to Marla Runyan or Mary Decker Slaney. Jon was cocaptain of the South Eugene High School cross-country team. Amy, however, followed her own singular path to the sport. “She got started through tennis,” Jon says. “She relied on incessant motion and energy on the court, and that led to running for its own sake.”

Although tennis may have gotten her started, Amy’s devotion to running, like every other aspect of her life, grew out of her disease, and was nourished by a deep, complex root system.

In 1997, at age 24, after graduating from Stanford, Kirsten Frohnmayer died from complications of FA. Due to a bone-marrow transplant, Kirsten had lived 14 years after her diagnosis. That provided a modicum of solace for Lynn and Dave, but their battle against the disease—their race against time—wasn’t over. Amy was still here, simultaneously growing up and dealing with her mortality.

A few years later, after Lynn had become a certified scuba diver, the family went on their first diving trip to Cozumel. “The instructor put us in pairs,” Lynn remembers. “Jon went with me, and Amy dove with her dad. That was fun for her, but she complained to me that he sucked oxygen like I sucked ice cream. So we switched and Amy dove with me. We both got it. Amy was only 12, but was a wonderful diver—graceful and receptive to the beauty of this world she was moving through.”

After that first trip, Amy and Lynn took several diving vacations together. For all its appeal, however, diving could only be an occasional adventure. Amy couldn’t wait to live in the moment. What was the closest everyday equivalent to scuba diving? How could she move through the world under her own power, paying attention inwardly and outwardly, at once free and connected? “I connect Amy’s love for running to her experience with scuba diving.” Lynn says. “They were both physical outlets that brought her close to nature and fed her spirit.”

Mark, 42, also recognized his baby sister’s artistic sensibility and spiritual aura. “Amy was the family poet,” he says. “It was as if the accrued energy from our long ordeal with FA—all the hope, all the love, all the anguish—came together and crystallized in Amy.”

Several years later, in a letter to FARF donors, Amy spelled out her credo: “Through the years, I’ve been intermittently paralyzed by uncertainty surrounding my future and by the devastating losses of two sisters and countless friends who share this diagnosis. Life has been a series of powerful lessons in letting go—in accepting over and over the setbacks inherent in life with FA and transcending fear long enough to set goals that give life meaning: to learn how to live inside of moments, to nurture relationships with loved ones, and to contribute in little ways to this world throughout whatever time I have.”

In high school, Amy played varsity tennis and was a founding member of the girls’ cross-country ski team. She was an honor student in South Eugene High School’s International Baccalaureate Program, participated in Model United Nations, and held office in student government.



She also volunteered with Courageous Kids, a support group for children dealing with grief and death. Years earlier, after her sisters’ deaths, members of the organization invited Amy to attend their meetings, but she declined. According to an AP story about the family that was published in 2005, “[Amy] wasn’t sure about public grief, shied away from counseling or support groups, and felt she had to be strong for her parents.”

By her teen years, however, Amy had grown more comfortable with the subject of death, undertaking a study that was both personal and dispassionate. For a high school project, she examined taboos regarding death prevalent in American culture. “Isolation is a huge issue throughout the grieving process,” Amy told the AP reporter. “You feel alone. People are extremely afraid to talk about death.”

Amy, by contrast, for whom death was a concrete, inescapable fact, squarely confronted it. “She makes a point of saying her sisters ‘died,’ avoiding euphemisms like ‘passed away’ or ‘lost,’” the AP article reported.

At high school graduation in June 2005, despite her FA prognosis—or perhaps, in part, because of it—Amy Frohnmayer’s senior classmates voted her the student most likely to succeed. In September, following in the footsteps of her mother, brother Jon, and sister Kirsten, Amy enrolled as an undergraduate at Stanford. During her first week on campus, she met a fellow first-year named Chenxing Han. The two became close friends and eventually roommates.

“From the moment I met Amy, I recognized this aura around her—a glow,” Chenxing says. “Amy could simultaneously seem as carefree as a child and as wise as a 70-year-old grandmother. She was compassionate but clear-eyed and grounded, with a mischievous streak and self-deprecating sense of humor. You might think because of her disease and interest in meditation and love of poetry that she’d be a moonbeam type, but that wasn’t the case at all.”

In college, Amy solidified her commitment to running. “I became a runner because of Amy,” Chenxing says. “Although I couldn’t keep up with her, she always encouraged me. She was such a strong runner—she was a superwoman in so many ways.”

While at Stanford, Amy also deepened an exploration into Buddhist-based meditation and contemplative practices that began during her teen years. She discovered that running enriched her ongoing quest to be present in the moment. “Running was a spiritual practice for her,” Chenxing says, “but everything Amy did was infused with spirituality. She treated her morning routine as a sacred ritual: one blueberry muffin savored before her four-or-more-mile run on the loop around campus.”

In her sophomore year, Amy decided to take on the challenge of a marathon. Her parents and doctors were skeptical. Why stress her already compromised system, further challenge her bone marrow’s capacity to produce red blood cells? Why not run a 10K or, if she was more ambitious, a half marathon?

“Amy wanted the full 26.2 experience,” Lynn says. “She thought, if everyone else had the option of running a marathon, why couldn’t she? Plus, a few years from now, it would be even more dangerous to stress her system.”

Under close medical supervision, Amy signed up with a Team in Training group and began prepping for the 2006 Nike Women’s Marathon in San Francisco. “Lynn worried it would harm her blood counts, deplete her marrow,” Dr. Bagby says. “There was no evidence for that, but we really didn’t know. This had never even been contemplated before—an FA patient running a marathon. Would it be good or bad for Amy? Her doctors had opinions either way, but in the end it came down to her decision.”

When her hemoglobin count dropped during training, Amy persuaded her doctor to prescribe erythropoietin, the red-blood-cell-enhancing hormone illicitly used by doping athletes. She thus blazed two trails: running a marathon with FA while legally on EPO. “By God, she was going to do that marathon!” Lynn recalls.

She wanted to be in San Francisco for her daughter’s race, but it was scheduled for the same day as an important FA medical conference. Lynn needed to take notes and write newsletter articles; no one else had volunteered for the task. Her daughter needed her, but so did the FA community. Which duty took precedence? Due both to her responsibility to other suffering families and to the possibility, however slim, that some shred of information or research might emerge at the conference that could help her own daughter, Lynn decided the FA meeting formed the more pressing commitment.

On October 22, 2006, at age 19, wearing bib number 8516, Amy Frohnmayer ran her marathon in 5:27:22. At the finish line, Amy phoned Lynn. “I did it, Mom!” Lynn wept with relief and joy, commingled with guilt and grief.

In December 2015, when Alex Winn decided to propose marriage to Amy Frohnmayer, he carefully selected the venue and the time: on the beach in Maui, in the middle of the couple’s morning run.

The past two years had been the happiest and most intense of Alex’s life, and he thought the same could be said for Amy. When they had met in 2013, and she had advised him to google Fanconi anemia, Alex, with his pharmacist’s training, had immediately grasped the severity of Amy’s disease, and the stakes of continuing the relationship. But by that point he was already deeply in love. “From that first moment at the restaurant, I knew there was no turning back,” he says.

For the most part, the ensuing 24 months had passed in a manner typical for any young couple: a blur of work, school, friends, sports, and travel; marked by false starts and unexpected openings, racking doubts and save-the-world dreams. For Amy and Alex, however, there was a deeper weft to the fabric: the fact of FA. Should he fight and fear the disease, or accept it, meet it, and learn from it? Amy had long since decided on the latter approach, and Alex followed her lead. FA became part of their life.

Amy closely monitored her blood count and every six months underwent an intrusive bone-marrow biopsy. She served on the FA Research Fund board and spoke about the disease at conferences, including the week-long FA Family Meeting at Camp Sunshine in Casco, Maine, where she worked one summer as a counselor. “Amy was beloved and respected at that place,” says Chenxing Han, who visited the camp that summer. “Little kids would follow her around, and adults would flock to the meetings when she gave a talk.”

“FA was Amy’s teacher,” Alex says. “It helped shape her determination to live in the moment and inspired her interest in Buddhism and meditation. Amy’s spirituality was deeply rooted in nature. It was instinctive and intrinsic, but she also worked at it.”

Running, Alex learned, formed a key tool for Amy’s task. “There were two central needs that running satisfied for Amy,” he says. “The first was physical. Running was a way for her to have some control over her disease. She couldn’t control her genes, but she could choose to live as healthfully as possible. The second need was mental and emotional. Running was an avenue of meditation for Amy. A way for her to connect with nature, and get into that rhythmic, receptive zone. Amy loved being in the zone.”

After earning her bachelor’s degree in psychology, Amy remained at Stanford for a fifth year to earn a master’s degree in the discipline. She then moved on to Oregon Health & Science University in Portland, where she worked with young-adult cancer patients, enrolling them in clinical-trial treatment programs. However, she felt drawn more to counseling than to academia or research. Also, time was passing; Amy had now outlived both of her sisters. How could she make the most of the years she had left?

She decided to move to Bend, where she enrolled in the master’s program in counseling at OSU-Cascades, worked part-time at the paper store, and deepened her running practice on her favorite trail along the Deschutes River, covering four miles most days, seven miles twice a week, keeping in steady half marathon shape. On visits to her nearby vacation home, Lynn would walk the trail in the morning and sometimes encounter her daughter out on a run.

“Amy would be flying!” Lynn recalls. “Her hair would be streaming, she’d have this huge smile on her face. I understand that running isn’t always easy. In fact, a lot of the time, it hurts. But running never seemed painful for her. It never seemed to be a chore.”

Now Amy introduced Alex to the Deschutes River Trail, which looped through the heart of Bend. When it snowed, they put on traction cleats and ran on the banked drifts beside the trill and rush of the river, flanked by walls of basalt and sheltered by the juniper and ponderosa pine of the high desert.

One day Amy was out running solo and stopped to talk to another young runner. Her name was Betsy Flood, and she had moved to Bend from her native Iowa to run professionally for the Oiselle-sponsored team organized by Lauren Fleshman. Betsy immediately responded to Amy’s attentiveness and warmth. After that day they often ran the trail together. “Amy was a good runner,” Betsy says. “It wasn’t like I had to slow down a lot to talk to her. We’d typically go out for a half hour or so, at about a nine-minute pace.”

Betsy would talk about her disappointments and frustrations: Health problems had detoured her professional hopes. “My troubles seemed trivial compared to what Amy was dealing with,” Betsy says. “But she listened closely and respectfully—Amy was a wonderful listener. And I admired her approach to running. It was central for her, yet she wasn’t obsessed by it.”

When Amy went back to Eugene for a visit she would occasionally run with her brother Mark, who had founded a company manufacturing environmentally friendly three-wheeled vehicles. Mark recalls running a half marathon in Eugene that coincided with a breakup with a girlfriend. “I was sad and out of energy and ran the half eight minutes slower than my goal time,” he says. “I decided to go back on the same course a week later and try again. Amy was over from Bend for the Thanksgiving holiday and volunteered to pace me for the first leg. She kept me on pace, but more important, helped me laugh at myself, and regain perspective. Thanks to Amy, I hit my time goal.”

Amy also ran to discharge the grief of losing her father. After a six-year engagement with prostate cancer, Dave Frohnmayer died in March 2015, at age 74. “Amy ran more after her father died,” Alex says. “She upped her mileage to process her grief and to get closer to her memories of Dave. She ran so hard she got shin splints and had to take a week off.”

In December 2014, Amy and Alex had gone on vacation to Kauai with Dave and Lynn, the last family vacation before Dave’s death. It was a happy time for Amy. Each morning, she and Alex would run on the beach. The trade winds were gentle, and the surf was warm when they swam at the end of their run.

And now, a year later in Maui, Amy again relished the couple’s morning run along the beach. Alex planned the moment with a pharmacist’s precision and a lover’s flair. They set out to run two miles along the beach to a turnaround point in a grove of Kiawe trees. He worried through the outbound miles because the jeweler had set the engagement ring in a chunky velvet box that Alex could barely squeeze into the key pocket of his running shorts. It made a sizable lump. He fretted that Amy would see it and the surprise would be spoiled.

But she didn’t notice. They reached the trees and Alex stopped. Using his toe, he drew a circle in the sand. Amy said, “That’s cool!” and stepped inside of it. He drew another circle intersecting it and stepped into that one. On bended knee, he fished the box from his shorts pocket. He lifted out the ring and offered it to Amy, along with the question. She grinned, her answer never in doubt.

Amy says yes to Alex in Maui, December 2015. Frohnmayer family

Amy and Alex departed Hawaii and returned to Bend, where their busy, happy lives continued, now deepened by a formal commitment to a shared future. The fact of FA hadn’t gone away, but the couple remained cautiously optimistic, simultaneously making plans and living day by day. In January 2016, Amy went in for blood tests and the numbers were good, the numbers were normal. Winter passed into spring—work, classes, miles on the river trail—and Amy was nearing completion of her second master’s program. She was busy writing her thesis, busy on all fronts.

On May 6, while she was out on her routine run, a shard of pain shot through her spine. She chalked it up to the residue of a recent viral infection. It quickly passed and Amy ran on.

On a weekend in mid-May, Amy and Alex traveled to Portland to attend a memorial service for Alex’s godmother. They stayed at a hotel near the west bank of the Willamette River. On Saturday morning, they went out for a seven-mile run along riverside paths, looping over the car-free Tilikum Crossing bridge, which had recently opened. The spring sunshine glinted off the water and off the glass in the windows of the OHSU Hospital on a hill high above downtown, where Amy had once worked with young-adult cancer patients.

She ran with fluid grace and Alex moved easily beside her. His running had improved tenfold since he’d met Amy. Her fleeting pain was forgotten, the golden thread still held. “Everything was working for us,” Alex says. “We had so much to look forward to.”

A few days later, however, back in Bend, Amy’s pain returned in a flood. They went to the emergency room at St. Charles Hospital, where Alex worked. The pain was urgent but still manageable; in the ER waiting room, she was able to type a few paragraphs of her master’s thesis. The doctors ran preliminary tests and cautiously sent her home. But the pain returned, magnified—a deep, piercing bone pain. Alex drove her back to the ER and this time she was admitted to the hospital. Her blood counts, so encouraging just a few months before, had turned dire.

Amy was transferred to the OHSU Hospital’s Knight Cancer Institute in Portland, near where she’d run so freely just a few days before. There, the AML diagnosis was confirmed. Acute myeloid leukemia: for so many FA patients, the bitter prize for their years of survival. Amy’s bone-marrow cells were almost entirely replaced with leukemia cells; the prognosis could not have been darker. But the Frohnmayer team remained calm. They had been through this before. Indeed, Lynn had been preparing for the possibility of this development for nearly 30 years, since the day she’d learned that there’d been a mistake, that baby Amy had the FA package after all.

The family rallied around Amy in Portland. Mark was there for business and met them at the hospital. Jon took a leave of absence from his law firm in East Palo Alto, and Alex took family leave from his duties at St. Charles. Everything they’d been learning and practicing for years now came into play. “We were optimistic,” Alex says. “A lot of good minds were studying the possible cures and what-ifs.”

For her part, Amy had watched how her parents conducted themselves during the final illnesses of her two older sisters. She had been preparing for this moment for her entire life. “Amy knew just what to do,” Lynn says. “You don’t give in to despair, you don’t let yourself spiral down. You take it step by step. She understood, with every fiber of her being, that no matter the situation, there’s always a next step.”

Beyond the pragmatic sphere, Amy responded to her crisis with deep, intuitive wisdom. Instead of loosing a tide of fear, the sudden onset of AML released a river of fear’s anodyne: a surge of humor, compassion, insight, and love that was remarkable even by Amy’s standards. “The course of her disease was typical of FA, but in every other way, Amy was the furthest thing from typical,” Dr. Bagby acknowledges. “By every measure for a patient in her situation, or for a human being in general—cognition, communication, composure, peace of mind—Amy was the cream of the crop.”

“In its own way, it was a spectacular summer,” Alex says. “In fact, it was full of laughter. John, Amy’s uncle, her brother Mark, and I all play guitar. In the hospital, we were always playing and singing with Amy. People walking by her room—nurses, visitors, sometimes other patients—would come in to sing with us. But it wasn’t the music. It was Amy. People just wanted to be around her.”

“Amy’s mantra through the summer was gratefulness,” Jon Frohnmayer recalls. “She was constantly listing all the things she was grateful for, and asked all her visitors to do the same. On her way into surgery, she’d be asking the doctors and nurses what they were grateful for.”

On May 29, two days after her diagnosis at OHSU, Amy was flown to the Blood and Marrow Transplant Clinic at the University of Minnesota Medical Center in Minneapolis, where John Wagner, M.D., a prominent pediatric hematologist and oncologist who had also treated Kirsten, performed a cord-blood expansion. For the procedure to prove successful, the leukemia cells would need to be “mopped up” by new white blood cells or be expunged from Amy’s body using chemotherapy and radiation; the results wouldn’t be clear until weeks later. With her immune system depleted, there was a high risk of infection. Amy couldn’t leave the hospital until she had been engrafted with new white blood cells.

On Amy’s bad days she was weak and sick, but on her good days she laughed and joked and made collages for her family and friends. There were so many visitors that Alex had to make a schedule to manage the traffic. She was eventually allowed to leave the room for physical therapy, but a treadmill was brought into her room for regular exercise. As soon as her blood counts improved, Amy would walk the halls of the hospital floor several times a day, 11 laps for one mile. “The exercise was good for her physically, but it was also important to her to maintain a runner’s mentality and discipline,” Alex explains. On her good days she would log her four miles, recording the total on a grease-board chart she kept by her bed.

In early June, with both bride and groom wearing surgical scrubs, Amy Frohnmayer and Alex Winn were married in her hospital room. Ten days later, via Skype, Amy participated in the degree-granting ceremony for her master’s program at OSU; she was honored as her cohort’s most distinguished student.

Six weeks after the cord-blood expansion, tests revealed that the procedure had failed to ward off a relapse. The leukemia cells had returned. Amy was flown back to Portland, where she was readmitted to OHSU’s Knight Cancer Institute.

“We never gave up,” Alex says. “We tried to approach her AML intellectually, balancing the experimental treatments with what they took out of her and her quality of life.” Brian Druker, M.D., director of KCI, whose research resulted in the development of the breakthrough cancer drug Gleevec, would pore over Amy’s charts and lab results, helping to brainstorm any conceivable treatment. Dr. Bagby sounded his international contacts for potential clinical trials. “It was always Plan A, then Plan B, then Plan C,” Alex says. “Her doctors, her mother, her brothers—we would all be there daily discussing the options.”

Chenxing Han flew in from Cambodia, where she was writing a book. “I was heartbroken,” she says. “Her leukemia came so hard and so suddenly. We never expected it, although we always knew it could happen. But in the hospital, amazingly, it was the same old Amy. She wouldn’t deny what was happening, but she still refused to let it define her altogether. ‘Let’s have a cancer party!’ Amy said. Every day in her room felt like a party, full of visitors, music, and love.”

Summer edged into autumn, Amy’s favorite time of year. “Fall is heartbreakingly beautiful,” she wrote in a 2014 letter to FARF donors. “Each crisp, clear morning brings opportunities to fall in love with the world anew. Color-soaked trees line the river path on morning runs…Fall is also the honest season. It does not pretend that life blooms forever. This season reminds me that life and death are intrinsically intertwined, that cold and rain are just as crucial in sustaining balance as sun and warmth. Fall reminds me to see the fact of impermanence not as a fear-inducing harbinger of death, but rather as a useful tool in crafting a meaningful, beautiful life.”

“FA has wrinkled my story with loss, including the deaths of my two sisters, Katie and Kirsten, and has challenged me repeatedly with the threat of an abbreviated life expectancy. And. This illness has instilled in me the importance of living in accordance with the themes I cherish most: appreciation of beauty in nature, gratitude, love, generosity, and being profoundly present for the life that is here.”

As September waned, Amy grew progressively weaker. Her glow somehow persisted. Mark Frohnmayer recorded a video of Amy in her hospital room. “I love running,” she said in it. “I like to always stay at a place where I could run a half marathon if I really had to.”

“You never know when you’re going to have to run half of 26 miles to tell the Athenians what’s up,” Mark said, joking.

Amy laughed and then cried, and then started laughing again. The video ends with her reciting lines from the poem “In Blackwater Woods,” by Mary Oliver: “To live in this world/you must be able/to do three things:/to love what is mortal;/to hold it/against your bones knowing/your own life depends on it;/and, when the time comes to let it/go,/to let it go.”

On the afternoon of October 1, Amy looked up from her bed in the ICU and smiled at Lynn. She had been transferred there that same morning, as a result of pneumonia in her lungs. “How lucky am I? Every time someone comes into my room, it’s someone I love!” she said.

Late that night she struggled just to breathe. Nothing more could be done. In the early morning of October 2, not long before dawn, surrounded by her family, at age 29, Amy Frohnmayer Winn died.

Staying in shape in the hospital. Frohnmayer family

“It’s been a whole different life than the one I envisioned,” Lynn says three months later. It’s late in the afternoon at the house in Eugene; the winter day’s final sunbeam fades and a cold rain spatters the windows of the dining area. “One day I was a social worker and mom, and the next I was pouring all my time and energy into understanding and fighting a rare genetic disease.”

Due to the work funded and catalyzed by FARF, young people with FA now survive bone-marrow transplant on an almost routine basis. In 1995, Kirsten Frohnmayer had a 20 percent chance of surviving the procedure. Today, in three major medical centers in the United States that specialize in the procedure, there’s an 85 to 90 percent survival rate. People with FA are now growing up and graduating from college and starting careers and falling in love. “Last year, for the first time, the number of adult patients in our FA support group outnumbered the children and adolescents,” Lynn says. “Since the foundation started, the overall life expectancy for FA has increased at least 10 years.”

Try as she might to deflect attention, to say that she has only done what any parent would do, and that the foundation’s achievements are the product of a team effort, today, so soon after the death of her youngest daughter, Lynn Frohnmayer’s singular form of greatness shines through. Every day for 33 years, through the exuberant lives, wasting illnesses, and premature deaths of three daughters—while knowing her daughters’ fate during every minute of those years—Lynn displayed extraordinary grace under unimaginable pressure. She endured immense suffering, and enacted immense resistance to suffering. Every day for 33 years.

“I remember vividly the day in 1983 that Lynn first called me,” says Grover Bagby. “‘What do you know about FA?’ she asked. Not nearly as much as I’d learn in the ensuing Frohnmayer years. This disease is a stunner. It’s incredible to think about a parent dealing with it. The challenges facing that family were overwhelming. The only comparison I can think of is the Book of Job. The way they responded to those challenges has helped people around the world. Thanks to Lynn’s work, we now understand the basic science of Fanconi anemia. I’ll be grateful to the family forever.”

In the annals of distance running, of people struggling with cancer and other fatal diseases, and of distance runners engaged with those maladies, the case of Amy Frohnmayer Winn would likely rank well down the all-time lists.

She never set a record, never won a race, never qualified for Boston, and never made a grand heroic gesture in the manner of Terry Fox, who in 1980, while dying from cancer, ran more than halfway across Canada on a prosthetic leg to raise money for cancer research.

Rather than the marathon, ultramarathon, or transcontinental consciousness-and fund-raising trek, Amy’s metier was the humble daily run. She raced but didn’t worry where she finished, and many of her best and truest runs were logged solo. But Amy ran no less passionately than Terry Fox, and her contribution, as an inspiration, is just as significant.

No matter how long or faithfully we run, there inevitably comes a moment of doubt, a spasm of existential worry that all the time out on the road, or running around a track, or laboring to whittle a PR, or busting to get from Point A to Point B in front of the next person—all of that is meaningless, a reassuring fiction we tell ourselves, precious moments of life packed down the rathole, just another one of the infinite ways that human beings have concocted to deny the fact of our mortality.

The moment soon passes and out of self-preserving habit and denial—I am going to live forever—we keep running. But that nagging wiggle of doubt will inexorably return, and when it does the doubt can be faced down by recalling the Promethean example of a Terry Fox or some other titan.

Or our footsteps can be settled by recalling a young woman who placed running near the center of her life but never grew obsessed by it; who nonetheless covered each mile, each step, as if it were her last. We can remember Amy Frohnmayer Winn, who never enjoyed—or never was blinded by—the luxury of denying her death; who knew from the earliest possible age that she possessed a meted stock of moments on this planet.

Amy decided to live inside her moments. Amy chose to run.