More than 15 years ago, Katharine Moser became part of the vanguard of genetic testing. While in her early 20s, she decided to find out whether she had a form of a gene that meant she was guaranteed to get Huntington’s disease — a fatal, incurable disease that ran in her mother’s family and typically begins to ravage people’s bodies and minds by middle age.
When the counselor at a Manhattan hospital told Moser that her test for the Huntington’s gene had come back positive, she asked what she was supposed to do.
“What do you want to do?” the counselor asked.
“Cry,” Moser said quietly.
Her heroic struggle to plan the rest of her life was the subject of a story that ran on the front page of The Times on March 18, 2007. It was the opening article in a series about the burgeoning field of genetic testing that my colleague Amy Harmon wrote and that won a Pulitzer Prize the following spring. As Amy noted, Moser represented the rising number of Americans who were choosing to find out their genetic destiny.
At the time, some of Moser’s friends thought she was making a mistake by being tested and was naïve about what a positive result would mean for her well-being. Others thought it was a brave decision that would allow her to live the next couple of decades on her terms. “I want to know,” as Moser put it.
Today is Moser’s 40th birthday. She remains healthy, although her Huntington’s symptoms will probably begin before she turns 50. I have asked Amy to use today’s newsletter to tell you about Moser’s life since the original story ran.
Amy Harmon writes:
What is it like to live with the knowledge of an almost-certain future foretold in your genes? That was the question I was assigned to tackle when I began to follow Katie Moser after her genetic test for the Huntington’s gene came back positive. But there was no simple answer.
Some days it seemed like an unbearable burden. Others, it seemed to imbue her with energy and purpose. As months ticked by and I kept looking for clues — at Katie’s 25th birthday party, at the facility where she worked as an occupational therapist, at a family bowling night with her aunt Loretta, who also had the gene variant — Katie asked if I was sure I still worked at The New York Times.
She had agreed to participate in the story in the hopes that an account of her experience would help others weigh whether to get the pre-symptomatic genetic test. But if I just liked hanging out with her, she assured me, that was OK too.
Fortunately for me, our relationship did not end with the story’s publication. And though I may not be any closer to a definitive answer to that question, it seems clear, looking back over my emails and texts with Katie, that the information spurred her to live in the moment.
She did Polar Bear dips on Super Bowl Sundays in Long Beach and took spur-of-the-moment trips to Hawaii, Costa Rica and South Africa. In 2008, she left her occupational therapy work to become a patient advocate at a pharmaceutical company seeking to build relationships with people who have movement disorders. In 2017, she met Pope Francis, who was hosting families affected by Huntington’s for a blessing at the Vatican. In 2018, she ran the New York City Marathon to help raise money for the Huntington’s Disease Society of America. “Apparently I was too slow to make it into the NYTimes,” she texted me.
“It definitely made me look at things differently,” Katie told me recently. “Both the realization that, ‘Oh, I have to plan for the future,’ but also, like, ‘If I can do this fun trip right now, I’m definitely going to do it.’”
Katie also sought to use her genetic knowledge to have a biological child without passing on the gene variant. In 2011, she underwent two rounds of in vitro fertilization to create embryos with donated sperm, first securing a promise from a cousin to care for a child should Katie become symptomatic earlier than expected. But in what her friend Colleen recalls as a “high pain moment,” all of the viable embryos, when screened, turned out to have the disease-causing gene.
Katie set aside her hopes of becoming a parent. She remains estranged from her own mother, who learned only through Katie’s test result that she herself carried the variant.
Katie has participated in every Huntington’s research study that came along, including traveling to the University of Iowa for three spinal taps. And she has advised dozens of other people with Huntington’s in their family. It is an individual decision, she counsels them. It may be easier to live without knowing. It just depends on who you are.
“I don’t advise them to not get tested, but I do advise them to just, you know — to think about it,” she told me. “Because once you find out, you can’t not find out.”
The failure, this spring, of a clinical trial for what had seemed like a promising Huntington’s treatment was a blow.
But Katie’s sense of humor remains intact. She has returned to working as an occupational therapist in upstate New York, where she lives with her dog, Penny, and a friend who has promised to care for Penny should Katie no longer be able to.
She recently reminded her Facebook followers that she shares a birthday, July 14, with the folk music icon Woody Guthrie, who died of complications from Huntington’s in 1967, and invited them to an auction fund-raiser that she is hosting to celebrate her 40th.
“Most posts in summer are about ‘beating the heat,’ but this post is about winning a scarf!” she wrote. “I still have a long way to go (probably, definitely need more yarn).”
She promised it would be done by winter.
THE LATEST NEWS
“We’re facing the most significant test of our democracy since the Civil War,” President Biden said of Republican-passed laws that change election rules.
Democrats agreed on a $3.5 trillion budget blueprint, which could pave the way for an infrastructure bill that would not require Republican support.
Chuck Schumer, the Senate majority leader, will propose legislation decriminalizing marijuana.
The Trump Justice Department sought the email records of Washington Post reporters, a day before William Barr stepped down as attorney general.
Biden plans to nominate Dr. Rahul Gupta, who led West Virginia’s opioid crisis response and is an ally of Senator Joe Manchin, as the nation’s drug czar.
Tennessee’s top immunization official suggested some teenagers might be eligible for vaccinations without parental consent. Then she lost her job.
Norwegian Cruise Line sued Florida over the state’s ban on vaccine requirements.
Other Big Stories
Consumer prices jumped 5.4 percent in June, the biggest rise since 2008.
Europe will introduce aggressive legislation to phase out fossil fuels.
A Russian ransomware group blamed for attacks on the U.S. suddenly went offline. It’s unclear who made that happen.
U.S. prosecutors charged four Iranians with conspiring to kidnap a journalist living in Brooklyn.
A judge blocked New York City’s plan to move 8,000 homeless people out of hotels and into barracks-style shelters.
“Cubans are feeling a bit more emboldened,” Amherst’s Javier Corrales writes in The Times.
The joy we’ve been missing: laughing in groups, Adam Grant writes.
The internet in a tizzy: Dissecting Ashley Olsen’s walk in the woods with a machete.
A long search: After 24 years, parents reunited with their kidnapped son.
Beans: Can this coffee company become the Starbucks of the right?
A Times classic: The heart of a swimmer vs. the heart of a runner.
Lives Lived: One costume designer called Paul Huntley “by far the premier hair designer on the planet.” In his 60-year career, Huntley styled hair and created wigs for more than 200 shows. He died at 88.
ARTS AND IDEAS
The 73rd Emmy Awards announced their nominations yesterday. HBO led the nominations, followed by Netflix. Here’s what else you need to know:
A new playing field: The competition was more open than usual, because the pandemic pushed back new seasons of some of last year’s most nominated shows, like “Insecure,” “The Marvelous Mrs. Maisel” and “Succession.”
Streamers dominated: The three most nominated shows were from streaming platforms: Netflix’s “The Crown,” and “The Mandalorian” and “WandaVision” from Disney+. Only one nominee for best comedy — ABC’s “Black-ish” — was from a cable or broadcast network.
Love for the royals: “The Crown” dominated the acting categories, with seven of its performers getting nominations.
Toughest category: Best actress in a limited series may be the Emmys’ most competitive race. The nominees are Kate Winslet (“Mare of Easttown”), Anya Taylor-Joy (“The Queen’s Gambit”), Michaela Coel (“I May Destroy You”), Cynthia Erivo (“Genius: Aretha”) and Elizabeth Olsen (“WandaVision”).
A first: Mj Rodriguez of “Pose” became the first transgender person to land a nomination in a lead acting category.
Here are more snubs and surprises. — Sanam Yar, a Morning writer
PLAY, WATCH, EAT
What to Cook
Make sweet-and-spicy grilled vegetables with burrata, or any of these easy vegetarian grilling recipes.
What to Watch
Less than a decade after fleeing a repressive community, Julia Haart heads a global talent empire. Her next step? Letting viewers peek behind the curtain in “My Unorthodox Life.”
Step into the world of whimsical Instagram cakes.
The hosts joked about Rudy Giuliani.
Now Time to Play
The pangram from yesterday’s Spelling Bee was topiary. Here is today’s puzzle — or you can play online.
Here’s today’s Mini Crossword, and a clue: Attempt (three letters).
If you’re in the mood to play more, find all our games here.
Thanks for spending part of your morning with The Times. See you tomorrow. — David
P.S. The Times documentary “Framing Britney Spears” received two Emmy nominations.
Here’s today’s print front page.
“The Daily” is about the heat in the Pacific Northwest. On “The Argument,” should Catholic bishops deny Biden communion?
Lalena Fisher, Claire Moses, Ian Prasad Philbrick, Tom Wright-Piersanti and Sanam Yar contributed to The Morning. You can reach the team at [email protected].
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