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How a SIDS Study Became a Media Train Wreck – The Atlantic

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Sudden infant death syndrome, or SIDS, “will be a thing of the past,” according to Carmel Harrington, a sleep researcher at the Children’s Hospital at Westmead, in Australia. A press release describes her new study, out this month, as a “game-changing” effort and a “world-first breakthrough” that could prevent future deaths from the tragic illness. Celebrations quickly spread on social media: “THEY FOUND THE CAUSE OF SIDS. Excuse me while I cry for all the parents,” one viral tweet declared. “Closest thing to a miracle in a long time,” said another. The press soon picked up the story. On Friday, a segment on Good Morning America touted Harrington’s “very, very important study” of SIDS, while a story in the New York Post promised that her data would “bring closure to countless parents who have endured the nightmare of losing a child.”

Sadly, these claims are quite absurd. The original research paper, published on May 6, described a small-scale but interesting project: Harrington and her colleagues measured activity levels of a protein called butyrylcholinesterase in dried blood collected from about 600 babies shortly after birth, including 26 who died from SIDS and 30 who went on to die from a different condition during their first two years of life. On average, those who died from SIDS had somewhat less butyrylcholinesterase activity in their blood than healthy newborns did. According to the study’s authors, this suggests that, with further work, the protein “could potentially be used as a biomarker to identify and prevent future SIDS deaths.” If that qualifies as a scientific “miracle,” the bar is inches from the ground.

Even after decades of research, SIDS remains “unexpected, dramatic, and devastating,” as three prominent doctors put it in a New England Journal of Medicine editorial published over the weekend. If researchers had really pinpointed a biological cause for these deaths—as some press reports have claimed—it would salve parents’ anxiety and might lead to future treatments. But one need only read the new paper in its entirety to see they haven’t reached this goal.

At best, the study represents an incremental advance. This is not meant to be an insult; science works in increments. But the numbers don’t suggest that a screening test for SIDS is really in the works, let alone one that will quickly end the scourge of infant deaths. The authors report that protein-activity levels were measured in a range of 1.7 to 23.3 units per milligram for healthy newborns, and from 2.9 to 10.8 for those who died of SIDS. Though the group averages were different overall (7.7 versus 5.6), individual values still overlapped a great deal. In other words, a low protein-activity level at birth could be found in a baby who might end up dying from SIDS, as well as one who would go on to live a healthy life.

I reached out to Harrington and her co-author Karen Waters, a professor of child and adolescent health at the Children’s Hospital at Westmead, to ask about this issue, among others. Measuring the protein “will not work as a universal screening test, for precisely the reasons that you have highlighted,” Waters told me via email. Harrington said that their “finding represents the possibility for the future identification of infants at risk for SIDS” and that the study identifies “a measurable biochemical marker (not cause)” of the condition.

The confusing and controversial status of SIDS as a formal diagnosis adds to the uncertainty. SIDS is considered a “diagnosis of exclusion,” which means that it applies only when other causes have been carefully ruled out, and also that it is likely to comprise a number of different conditions. Some forensic pathologists have abandoned the diagnosis entirely on account of this ambiguity, James Gill, the chief medical examiner of Connecticut, told me. The authors of this month’s study did not have access to autopsy details for any of their subjects, and relied in most cases on a coroner’s assessment that SIDS had been the cause of death.

Even if it were possible to develop a screening test for SIDS, we might not want to use it. As a hospital pathologist myself—which is to say, as a doctor who specializes in diagnostic testing—I know that every form of screening makes mistakes. Sometimes, the benefits from these tools are worth the harm of an occasional error. Cervical-cancer screening, for example, greatly reduces deaths even though pap smears regularly lead to unhelpful results. But a wonky SIDS test would have catastrophic ill effects. A false positive result would terrify new parents. A false negative could lead them to abandon safe-sleeping practices—or far worse, make them seem at fault if SIDS did strike. Even true results might not be much help, because early-detection tests are only as good as the treatments we use in response to them. An aggressive campaign by pediatricians to promote safer sleep practices has caused the number of SIDS deaths to plummet since the 1990s. That campaign’s advice is already given out to everyone, and would not change on the basis of a blood test.

Given that no further interventions would be available for infants flagged as high-risk by a screening test for SIDS, I asked the authors whether it makes sense to measure babies in this way. Waters responded by citing the “fundamental principle” that you should not screen newborns for disease unless you can “affect the outcome for the child.” Harrington has suggested in an interview that the researchers “don’t know the shape of what the intervention will be at this stage.”

If the study’s findings were ambiguous, and its implications dubious, why did the research get so much attention in the media? Many outlets seemed impressed by its connection to The Lancet, founded in 1823, and one the world’s most prestigious medical journals. The SIDS paper did not actually appear in The Lancet, but rather in a lesser-known periodical called eBioMedicine, which happens to be published under The Lancet’s umbrella brand (along with more than 20 other journals). Media coverage glossed over that distinction, though, or ignored it altogether. (Good Morning America managed to combine the two journals’ names into a fictional publication called “eLancet.”) These errors are understandable; prominent Lancet branding on eBioMedicine’s website and web address make it easy to get confused, and journal editors sometimes take advantage of academic prestige to court media attention.

The study’s tenuous connection to The Lancet was just one small part of its appeal. More significant was Harrington’s own story: She’d lost her son to SIDS 29 years ago, and then watched as a friend lost a baby to the same ailment a few years later. Harrington spent the intervening decades trying to discover a way to prevent this tragedy for others. “I made a solemn resolution there and then to leave no stone unturned in my quest to solve the mystery of the Sudden Infant Death Syndrome,” she wrote in a request to crowdfund her research that was first posted in August 2018. Before the study was published this month, the campaign hadn’t received a contribution since 2019; now donations have been pouring in. As of yesterday, the campaign had raised about $50,000, mostly in small increments. “Since we have published our research, I have continued to be overwhelmed by the generosity of the community,” Harrington told me.

There’s no shame in soliciting funds for a good cause, and Harrington’s scrappy effort to keep her research going could be seen to merit praise. But Harrington herself has linked improbable claims about the science to overt requests for money: “To get us there, we need a lot of funding,” she told an interviewer, moments after saying that she “knows” that SIDS will be eradicated in “three to five years’ time.” (The hospital, which manages the endeavor’s charitable account, lent credence to this accelerated time frame in its press release.) An article from the Australian Broadcasting Corporation quoted Harrington making a plea for further backing: “We know what we have to do. It’s just actually getting the funding for it.” But the story, like numerous others, did not provide any appraisal of the research from independent experts, which would have helped inform potential donors. Harrington, in her email to me, reiterated her claim that screening tests and interventions “could be 3-5 years away” with appropriate funding.

Many outlets also neglected to mention the study’s known limitations, as described in the paper. In that context, the authors acknowledge that they examined relatively few subjects, and that the tested blood was more than two years old. Their results could, therefore, turn out quite differently if the technique were put into widespread practice. “There is a lot more work to be done before this can be heralded as a solution,” Waters told me in her email. “As we said in the paper, it offers new directions for research in the field.” Harrington told me that “this finding is only one bit of the puzzle and there is so much more to learn.”

Harrington’s personal accomplishments cannot be dismissed, even if new tests and treatments seem further away than she claims. Most of us never generate a speck of new scientific knowledge. To come back from tragedy, toil for decades, and then produce a promising approach for closer study … well, that may not be miraculous, but it matters all the same.

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Sutherland House Experts Book Publishing Launches To Empower Quiet Experts

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Sutherland House Experts is Empowering Quiet Experts through
Compelling Nonfiction in a Changing Ideas Landscape

TORONTO, ON — Almost one year after its launch, Sutherland House Experts is reshaping the publishing industry with its innovative co-publishing model for “quiet experts.” This approach, where expert authors share both costs and profits with the publisher, is bridging the gap between expertise and public discourse. Helping to drive this transformation is Neil Seeman, a renowned author, educator, and entrepreneur.

“The book publishing world is evolving rapidly,” publisher Neil Seeman explains. “There’s a growing hunger for expert voices in public dialogue, but traditional channels often fall short. Sutherland House Experts provides a platform for ‘quiet experts’ to share their knowledge with the broader book-reading audience.”

The company’s roster boasts respected thought leaders whose books are already gaining major traction:

• V. Kumar Murty, a world-renowned mathematician, and past Fields Institute director, just published “The Science of Human Possibilities” under the new press. The book has been declared a 2024 “must-read” by The Next Big Ideas Club and is receiving widespread media attention across North America.

• Eldon Sprickerhoff, co-founder of cybersecurity firm eSentire, is seeing strong pre-orders for his upcoming book, “Committed: Startup Survival Tips and Uncommon Sense for First-Time Tech Founders.”

• Dr. Tony Sanfilippo, a respected cardiologist and professor of medicine at Queen’s University, is generating significant media interest with his forthcoming book, “The Doctors We Need: Imagining a New Path for Physician Recruitment, Training, and Support.”

Seeman, whose recent and acclaimed book, “Accelerated Minds,” explores the entrepreneurial mindset, brings a unique perspective to publishing. His experience as a Senior Fellow at the University of Toronto’s Institute of Health Policy, Management and Evaluation, and academic affiliations with The Fields Institute and Massey College, give him deep insight into the challenges faced by people he calls “quiet experts.”

“Our goal is to empower quiet, expert authors to become entrepreneurs of actionable ideas the world needs to hear,” Seeman states. “We are blending scholarly insight with market savvy to create accessible, impactful narratives for a global readership. Quiet experts are people with decades of experience in one or more fields who seek to translate their insights into compelling non-fiction for the world,” says Seeman.

This fall, Seeman is taking his insights to the classroom. He will teach the new course, “The Writer as Entrepreneur,” at the University of Toronto, offering aspiring authors practical tools to navigate the evolving book publishing landscape. To enroll in this new weekly night course starting Tuesday, October 1st, visit:
https://learn.utoronto.ca/programs-courses/courses/4121-writer-entrepreneur

“The entrepreneurial ideas industry is changing rapidly,” Seeman notes. “Authors need new skills to thrive in this dynamic environment. My course and our publishing model provide those tools.”

About Neil Seeman:
Neil Seeman is co-founder and publisher of Sutherland House Experts, an author, educator, entrepreneur, and mental health advocate. He holds appointments at the University of Toronto, The Fields Institute, and Massey College. His work spans entrepreneurship, public health, and innovative publishing models.

Follow Neil Seeman:
https://www.neilseeman.com/
https://www.linkedin.com/in/seeman/

Follow Sutherland House Experts:

https://sutherlandhouseexperts.com/
https://www.instagram.com/sutherlandhouseexperts/

Media Inquiries:
Sasha Stoltz | Sasha@sashastoltzpublicity.com | 416.579.4804
https://www.sashastoltzpublicity.com

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What to stream this weekend: ‘Civil War,’ Snow Patrol, ‘How to Die Alone,’ ‘Tulsa King’ and ‘Uglies’

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Hallmark launching a streaming service with two new original series, and Bill Skarsgård out for revenge in “Boy Kills World” are some of the new television, films, music and games headed to a device near you.

Also among the streaming offerings worth your time as selected by The Associated Press’ entertainment journalists: Alex Garland’s “Civil War” starring Kirsten Dunst, Natasha Rothwell’s heartfelt comedy for Hulu called “How to Die Alone” and Sylvester Stallone’s second season of “Tulsa King” debuts.

NEW MOVIES TO STREAM SEPT. 9-15

Alex Garland’s “Civil War” is finally making its debut on MAX on Friday. The film stars Kirsten Dunst as a veteran photojournalist covering a violent war that’s divided America; She reluctantly allows an aspiring photographer, played by Cailee Spaeny, to tag along as she, an editor (Stephen McKinley Henderson) and a reporter (Wagner Moura) make the dangerous journey to Washington, D.C., to interview the president (Nick Offerman), a blustery, rising despot who has given himself a third term, taken to attacking his citizens and shut himself off from the press. In my review, I called it a bellowing and haunting experience; Smart and thought-provoking with great performances. It’s well worth a watch.

— Joey King stars in Netflix’s adaptation of Scott Westerfeld’s “Uglies,” about a future society in which everyone is required to have beautifying cosmetic surgery at age 16. Streaming on Friday, McG directed the film, in which King’s character inadvertently finds herself in the midst of an uprising against the status quo. “Outer Banks” star Chase Stokes plays King’s best friend.

— Bill Skarsgård is out for revenge against the woman (Famke Janssen) who killed his family in “Boy Kills World,” coming to Hulu on Friday. Moritz Mohr directed the ultra-violent film, of which Variety critic Owen Gleiberman wrote: “It’s a depraved vision, yet I got caught up in its kick-ass revenge-horror pizzazz, its disreputable commitment to what it was doing.”

AP Film Writer Lindsey Bahr

NEW MUSIC TO STREAM SEPT. 9-15

— The year was 2006. Snow Patrol, the Northern Irish-Scottish alternative rock band, released an album, “Eyes Open,” producing the biggest hit of their career: “Chasing Cars.” A lot has happened in the time since — three, soon to be four quality full-length albums, to be exact. On Friday, the band will release “The Forest Is the Path,” their first new album in seven years. Anthemic pop-rock is the name of the game across songs of love and loss, like “All,”“The Beginning” and “This Is the Sound Of Your Voice.”

— For fans of raucous guitar music, Jordan Peele’s 2022 sci-fi thriller, “NOPE,” provided a surprising, if tiny, thrill. One of the leads, Emerald “Em” Haywood portrayed by Keke Palmer, rocks a Jesus Lizard shirt. (Also featured through the film: Rage Against the Machine, Wipers, Mr Bungle, Butthole Surfers and Earth band shirts.) The Austin noise rock band are a less than obvious pick, having been signed to the legendary Touch and Go Records and having stopped releasing new albums in 1998. That changes on Friday the 13th, when “Rack” arrives. And for those curious: The Jesus Lizard’s intensity never went away.

AP Music Writer Maria Sherman

NEW SHOWS TO STREAM SEPT. 9-15

— Hallmark launched a streaming service called Hallmark+ on Tuesday with two new original series, the scripted drama “The Chicken Sisters” and unscripted series “Celebrations with Lacey Chabert.” If you’re a Hallmark holiday movies fan, you know Chabert. She’s starred in more than 30 of their films and many are holiday themed. Off camera, Chabert has a passion for throwing parties and entertaining. In “Celebrations,” deserving people are surprised with a bash in their honor — planned with Chabert’s help. “The Chicken Sisters” stars Schuyler Fisk, Wendie Malick and Lea Thompson in a show about employees at rival chicken restaurants in a small town. The eight-episode series is based on a novel of the same name.

Natasha Rothwell of “Insecure” and “The White Lotus” fame created and stars in a new heartfelt comedy for Hulu called “How to Die Alone.” She plays Mel, a broke, go-along-to-get-along, single, airport employee who, after a near-death experience, makes the conscious decision to take risks and pursue her dreams. Rothwell has been working on the series for the past eight years and described it to The AP as “the most vulnerable piece of art I’ve ever put into the world.” Like Mel, Rothwell had to learn to bet on herself to make the show she wanted to make. “In the Venn diagram of me and Mel, there’s significant overlap,” said Rothwell. It premieres Friday on Hulu.

— Shailene Woodley, DeWanda Wise and Betty Gilpin star in a new drama for Starz called “Three Women,” about entrepreneur Sloane, homemaker Lina and student Maggie who are each stepping into their power and making life-changing decisions. They’re interviewed by a writer named Gia (Woodley.) The series is based on a 2019 best-selling book of the same name by Lisa Taddeo. “Three Women” premieres Friday on Starz.

— Sylvester Stallone’s second season of “Tulsa King” debuts Sunday on Paramount+. Stallone plays Dwight Manfredi, a mafia boss who was recently released from prison after serving 25 years. He’s sent to Tulsa to set up a new crime syndicate. The series is created by Taylor Sheridan of “Yellowstone” fame.

Alicia Rancilio

NEW VIDEO GAMES TO PLAY

— One thing about the title of Focus Entertainment’s Warhammer 40,000: Space Marine 2 — you know exactly what you’re in for. You are Demetrian Titus, a genetically enhanced brute sent into battle against the Tyranids, an insectoid species with an insatiable craving for human flesh. You have a rocket-powered suit of armor and an arsenal of ridiculous weapons like the “Chainsword,” the “Thunderhammer” and the “Melta Rifle,” so what could go wrong? Besides the squishy single-player mode, there are cooperative missions and six-vs.-six free-for-alls. You can suit up now on PlayStation 5, Xbox X/S or PC.

— Likewise, Wild Bastards isn’t exactly the kind of title that’s going to attract fans of, say, Animal Crossing. It’s another sci-fi shooter, but the protagonists are a gang of 13 varmints — aliens and androids included — who are on the run from the law. Each outlaw has a distinctive set of weapons and special powers: Sarge, for example, is a robot with horse genes, while Billy the Squid is … well, you get the idea. Australian studio Blue Manchu developed the 2019 cult hit Void Bastards, and this Wild-West-in-space spinoff has the same snarky humor and vibrant, neon-drenched cartoon look. Saddle up on PlayStation 5, Xbox X/S, Nintendo Switch or PC.

Lou Kesten

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Trump could cash out his DJT stock within weeks. Here’s what happens if he sells

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Former President Donald Trump is on the brink of a significant financial decision that could have far-reaching implications for both his personal wealth and the future of his fledgling social media company, Trump Media & Technology Group (TMTG). As the lockup period on his shares in TMTG, which owns Truth Social, nears its end, Trump could soon be free to sell his substantial stake in the company. However, the potential payday, which makes up a large portion of his net worth, comes with considerable risks for Trump and his supporters.

Trump’s stake in TMTG comprises nearly 59% of the company, amounting to 114,750,000 shares. As of now, this holding is valued at approximately $2.6 billion. These shares are currently under a lockup agreement, a common feature of initial public offerings (IPOs), designed to prevent company insiders from immediately selling their shares and potentially destabilizing the stock. The lockup, which began after TMTG’s merger with a special purpose acquisition company (SPAC), is set to expire on September 25, though it could end earlier if certain conditions are met.

Should Trump decide to sell his shares after the lockup expires, the market could respond in unpredictable ways. The sale of a substantial number of shares by a major stakeholder like Trump could flood the market, potentially driving down the stock price. Daniel Bradley, a finance professor at the University of South Florida, suggests that the market might react negatively to such a large sale, particularly if there aren’t enough buyers to absorb the supply. This could lead to a sharp decline in the stock’s value, impacting both Trump’s personal wealth and the company’s market standing.

Moreover, Trump’s involvement in Truth Social has been a key driver of investor interest. The platform, marketed as a free speech alternative to mainstream social media, has attracted a loyal user base largely due to Trump’s presence. If Trump were to sell his stake, it might signal a lack of confidence in the company, potentially shaking investor confidence and further depressing the stock price.

Trump’s decision is also influenced by his ongoing legal battles, which have already cost him over $100 million in legal fees. Selling his shares could provide a significant financial boost, helping him cover these mounting expenses. However, this move could also have political ramifications, especially as he continues his bid for the Republican nomination in the 2024 presidential race.

Trump Media’s success is closely tied to Trump’s political fortunes. The company’s stock has shown volatility in response to developments in the presidential race, with Trump’s chances of winning having a direct impact on the stock’s value. If Trump sells his stake, it could be interpreted as a lack of confidence in his own political future, potentially undermining both his campaign and the company’s prospects.

Truth Social, the flagship product of TMTG, has faced challenges in generating traffic and advertising revenue, especially compared to established social media giants like X (formerly Twitter) and Facebook. Despite this, the company’s valuation has remained high, fueled by investor speculation on Trump’s political future. If Trump remains in the race and manages to secure the presidency, the value of his shares could increase. Conversely, any missteps on the campaign trail could have the opposite effect, further destabilizing the stock.

As the lockup period comes to an end, Trump faces a critical decision that could shape the future of both his personal finances and Truth Social. Whether he chooses to hold onto his shares or cash out, the outcome will likely have significant consequences for the company, its investors, and Trump’s political aspirations.

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