Photo by Angelina Katsanis, Star Tribune

The afterlife of Amara Strande

Amara died at 20 working to protect her friends and family from PFAS “forever chemicals.” Her younger sister Nora, now 18, has emerged as an unlikely but powerful voice carrying on her legacy.

By Chloe Johnson Star Tribune

June 21, 2024

The afterlife of Amara Strande

Amara died at 20 working to protect her friends and family from PFAS “forever chemicals.” Her younger sister Nora, now 18, has emerged as an unlikely but powerful voice carrying on her legacy.

By Chloe Johnson Star Tribune

June 21, 2024
Photo by Angelina Katsanis, Star Tribune

Amara Strande knew her time was short. She was only 20, but a rare liver cancer diagnosed more than five years earlier had spread through her body, cracking ribs, pressing against her heart. It pushed on her vocal cords, threatening to snuff out the voice she had exercised for years in musicals and choirs. So she flew from the Twin Cities to Los Angeles, where a music producer would help her record three songs based on her struggle.

She came with her younger sister, Nora, who agreed to go despite feeling distant from her sister as she watched Amara decline. In the midst of the recording session Amara's voice failed her. Nora had never recorded in a studio. The lyrics weren't hers. But she carried the song — "Both/And" — to its end.

Amara died only weeks after that March 2023 trip. Nora, over the next 13 months, would take up her sister's song in a different way — carrying on Amara's advocacy against the chemicals that the Strande family ardently believes caused her cancer.

Amara and Nora grew up on the edge of industrial contamination from a 3M plant in the eastern Twin Cities that seeped into underground drinking-water wells, then into pipes, faucets, showers, sprinklers.

The PFAS, or per- and polyfluoroalkyl substances, were pioneered by 3M in the past century and used in a bevy of the company's products for their water-resistant, nonstick and grease-proof qualities. The carbon-fluorine structure that makes the chemicals useful has also made them nearly indestructible, and prone to build up in the blood and organs of people.

Amara devoted the last months of her life to urging elected leaders to do something about those toxins. She told Minnesota lawmakers that 3M's PFAS contamination was a "repeated offense that has festered in our land, water and bodies for decades." She did not live to see the results of her work. Minnesota passed the country's strictest ban on PFAS in consumer products, now known as "Amara's Law."

Today, her mother, father and sister have taken up her cause and brought her message all the way to Washington. Nora's voice has been one of the most effective.

Amara and Nora grew up in south Maplewood in a house on Dennis Lane. From the edge of the neighborhood, 3M's global headquarters rises up through a break in the trees, less than a mile away. Many of the family's friends and neighbors worked for the company.

The girls grew up enmeshed in the church communities of both parents, singing in choirs. Michael and Dana Strande both worked at Catholic churches when they met, and Dana would go on to lead an Episcopal church in Burnsville.

As she watched her parents counsel their congregations, Amara quickly formed some ideas of her own about how to help others. She insisted that instead of birthday presents, friends give items to donate to charitable groups. Nora grew up thinking that was simply the family's tradition, not Amara's idea.

Amara could also be a perfectionist, which sometimes irked her sister. She often urged Nora to do things differently: apply herself more in school, hang out with different people.

"I don't think I really appreciated it until she died," Nora said. "She always wanted me to have the best opportunities and the best life, because she knew that she wasn't going to be here forever."

At home, the family's water was piped in from St. Paul Regional Water Services, outside of the plume of 3M's contamination. But after news of 3M's PFAS pollution started to spread, Dana asked a friend who worked at the company about the chemicals, and whether she should be cautious about drinking water elsewhere. There was nothing to worry about, she was told.

Years later, Dana wondered: Had her daughters been poisoned by the water they drank at day care, at school, at church?

The first symptoms looked like repeated bouts of the flu. Amara would feel tired and run down, Michael said, then she'd suddenly rebound. Later, the symptoms transformed into episodes of abdominal pain. It wasn't until Amara's annual physical that her pediatrician ordered a scan. Doctors found a tumor threaded through her liver.

Her first surgery removed a 15-pound tumor. About 19 more surgeries would follow.

Amara's treatment plunged the household into a new schedule that revolved around appointments and hospitalizations. Family life was planned in three-month chunks, Michael and Dana said, because of the uncertainty of whether a treatment would work.

Nora said that for years, she couldn't fully process what was happening to her sister. She was in middle school when Amara fell ill — an already tough period of childhood now punctuated by images of her sister, comatose, hooked up to life-sustaining machines.

Between school disruptions from COVID and breaks from school in the later stages of her sister's illness, Nora said the last full year she spent in class was in seventh grade.

The dynamic between the sisters — one a perfectionist, the other more easygoing — only made their relationship more difficult as Amara got sicker.

To her close friend Isadora Swann, Amara worried openly about her family.

Swann met Amara through a teacher, as she was in the beginning stages of her own treatment, with a mass in her chest and an unclear prognosis. Amara "was always ready to take on another relationship in order to make someone else feel comforted and not alone like she did. And that's why she first started talking to me."

The two girls found themselves together on the oncology floor of Children's Minnesota more than once. They decorated their rooms, did each other's makeup, even found a pair of Razor scooters and raced through the halls. They compiled their expertise gained from stays at Children's into a document titled "A teenager's guide to cancer" and handed it out to nurses and doctors on the floor.

Sometimes, though, their conversations turned darker. Amara worried about being in pain as she died. Once, she confided, "'I can't die because I don't know what's going to happen to my family, my parents and my sister,'" Swann said. "That's what she was scared of."

By the time Avonna Starck, the state director of the advocacy group Clean Water Action, called Dana in January 2023, Amara was receiving hospice care at home. Starck read about Amara's story in the Minnesota Reformer, and she wanted to know if Amara would help in a campaign to pass a law that would ban PFAS from everyday products — everything from tampons to nonstick pans to ski wax.

It was Amara's choice to make.

"Amara asked me a ton of questions. She wanted to know exactly what my intentions were," Starck said. "She wanted to tell her story. But she didn't want the story to be manipulated."

As Michael remembers it, Amara didn't hesitate when she realized the chance she had to talk to legislators. Dana was less convinced. She asked her, is this the way you want to spend the rest of your life?

The answer was yes.

Before every hearing, Amara carefully wrote her testimony, and conferred with Nora and her friends on what she would wear. Michael took her to the State Capitol, rolling her wheelchair just to the edge of the hearing room. Weakened but still determined, she insisted on walking to the testimony table.

Every time Amara returned to St. Paul, she was frailer, her voice breathier. In testimony, she underlined she was exposed to these chemicals without her consent. And she was unflinching in her description of the disease: She was tormented, she said, by the trauma of more than five years of invasive treatments.

Michael always testified after her. It was too late for his daughter, but should more children get sick? Classmates from Tartan High School in Oakdale spoke, too — one who'd had a brain tumor removed, but was suffering lasting neurological effects. Jeff Munter, Amara's close friend, showed up twice to testify about his own fear about the health crises that could be stalking him or his friends.

In the case of Amara's cancer, the connection to PFAS is still unproven. Fibrolamellar hepatocellular carcinoma is a rare condition usually found in adolescents or young adults. It starts with a "one-time glitch in the DNA," said Sanford Simon, who runs a lab at Rockefeller University dedicated to the disease. Two genes in the DNA of a liver cell are fused together, and a cancer is born.

Simon spoke with Amara frequently about his work. He told her that no one can say for sure yet whether PFAS caused her cancer. But Simon is working to build a registry of fibrolamellar cases to see where people are getting sick. Initial results show that cases tend to cluster, including one concentration around the Twin Cities.

"There are clearly signs of some kind of environmental insult," he said, but more study is needed.

Still, he encouraged Amara when she became an advocate for protecting people from PFAS exposure. The public should be warned, he said.

Growing evidence has linked PFAS with several other diseases and conditions, including kidney, breast and testicular cancers, developmental problems in children, and reduced immune response in people of all ages, according to an influential guide for doctors put together by the National Academies of Sciences, Engineering and Medicine.

That group now recommends doctors offer PFAS testing to anyone likely to have a history of elevated exposures, and offer a higher standard of care if they have high levels of the chemical in their blood.

Asked what the company's stance was on the toxicity of its PFAS chemicals, a 3M spokesman wrote, "3M's products, including those containing PFAS, are safe and effective for their intended uses." The company has announced it will stop producing the chemicals, and work to stop using them in its products, by 2025.

The testimony of Amara and other east metro residents turned into a powerful chorus to counter industry lobbyists who argued the proposed law was too complex, too expensive, too hard to carry out. Bill author Rep. Jeff Brand, DFL-St. Peter, said every colleague he talked to about the bill lit up when he mentioned Amara.

"She definitely changed the paradigm," Brand said. "I don't think it would have passed if it wasn't for Amara being part of the conversation."

By April 2023, Amara was declining severely. Several friends remembered the last time they saw her, singing in a concert at the Minnesota Chorale, in one of four concerts she participated in around the beginning of April. That was where Amara was always happiest, Dana said: in the middle of a choir. Blending her voice into the larger song.

She made it through the multihour performance, but at the end, her friends noticed her energy was sapped.

"She gave her all to do something that she really wanted to do," friend Christian Krohn said, "with the little time that she had left."

Not quite two weeks later, her parents invited over friends and close family and played music at their home. Amara was drifting in and out of consciousness, and people would mill around and talk to her, her childhood friend Jacob Flanagan said. Flanagan's sisters Katie and Jesse, along with Nora, sang for the group.

Amara died early the next morning, two days before her 21st birthday.

The bill she testified in favor of passed the House floor three days later, and the Senate three days after that. When it was eventually signed by the governor, legislators had found a name: Amara's Law.

It is still the strictest ban on PFAS in consumer products anywhere in the country, and requires the chemicals to be removed from almost everything sold in Minnesota by 2032. Other states are considering similar action.

Amara's story began to find an audience beyond Minnesota. The family was being asked to speak about it, first by journalists and then by advocacy groups who wanted them to come to Washington.

Nora was still hesitant about what to say in these moments, and wondered if people cared about her perspective. A documentary crew mostly left her out of a feature on PFAS that included her parents. When Michael and Dana were invited to Washington for the first time, last September, she didn't know if she would speak up. But she didn't want to be left at home.

It was in a meeting with staff of the Council on Environmental Quality — in a converted rowhouse just across Pennsylvania Avenue from the White House — that Nora suddenly realized her family wasn't the only one reckoning with PFAS.

Nora looked around the room and saw other families with their own trauma. A woman who had lost her daughter to complex diseases after drinking contaminated water in Tucson. A youth minister in North Carolina who told of sick children in a region later found to have some of the worst contamination in the country, because DuPont spinoff Chemours was dumping chemicals into the Cape Fear River. A woman whose family fell ill after living on a military base where PFAS-laden foam was sprayed regularly in fire drills.

The group had carefully planned who would speak, and the Strandes weren't on the list. Nora decided, right at the end, to share her story anyway. She talked about Amara. She talked about the toll it had taken on her family. She talked about her own fear, that one day, she might get sick, too.

She brought the room to tears.

Since that trip, Nora has been to Washington three more times to share her family's story, twice with her parents and once alone. She has worked on and off as an intern with Starck, the clean water advocate, following her to events and conducting research.

The Environmental Working Group has helped pay the family's way to D.C. multiple times, though the Strandes receive no other compensation for their time.

It hasn't always been a matter of talking to federal officials. At one Senate committee meeting, Nora sat behind Scott Faber, EWG's senior vice president of government affairs, with a picture of her sister in her arms. Faber was urging senators to treat PFAS chemicals as hazardous substances that must be cleaned up. Lawmakers and their staff were distracted by the silent young woman in the front row.

"You could see them all whispering, pointing, who's that? What's going on? Like, there's panic across the dais," Faber said.

This April, the Environmental Protection Agency rolled out historic rules to protect Americans from PFAS exposure, limiting six of the most common varieties from drinking water for the first time. White House officials mentioned Amara's death, and the health consequences faced by others in her alma mater, Tartan High School.

"Today's action is a critical step in striving to ensure that no child or community, no family, no parent experiences the devastation that Oakdale has seen," Brenda Mallory, chair of the White House Council on Environmental Quality, said then.

Nora and her parents were well known to Mallory and her staff by this point. Three weeks later, Mallory visited Tartan and spoke with Nora and the circle of friends that formed around Amara in the last years of her life, listening to their concerns that their friends, family and neighbors, or even themselves, might one day fall sick.

"It's really heavy on my heart. Because I have such a close relationship with the chemical because of what happened in our family," Nora said. "It gets hard doing it all the time."

Will Nora continue down this path? For any 18-year-old, the future is a hard question to answer. She knows there's more to do with PFAS. She wants to hold an event to educate the community she grew up in, which still doesn't seem to have the contamination top of mind.

"I think she'd be proud of me," Nora said about her sister. "And at the same time, I think she'd be going, 'Nora, don't forget about your music.'"