Showing posts sorted by date for query SNOWFLAKES. Sort by relevance Show all posts
Showing posts sorted by date for query SNOWFLAKES. Sort by relevance Show all posts

Wednesday, November 06, 2024

Spain’s young flood helpers smash ‘snowflake’ stereotype


By AFP
November 6, 2024

Youths have been at the forefront of a wave of solidarity during Spain's devastating floods 
- Copyright AFP/File Olivier Touron

Alfons LUNA

Young volunteers have spearheaded a humanitarian campaign for victims of Spain’s deadliest floods in decades, smashing stereotypes of an apathetic and feeble “snowflake generation” interested in nothing other than themselves.

“Hundreds, perhaps thousands have come, they have conducted themselves magnificently,” said Noelia Saez, a 48-year-old from the devastated town of Catarroja.

The altruism also overjoyed 62-year-old Teresa Gisbert, a resident of the ruined town of Sedavi, where dozens of young volunteers rushed to assist as mud covered the streets and her home.

“They bring us food, they have helped us… they are angels,” she told AFP.

Their towns are in the eastern Valencia region, where almost all the destruction and the more than 200 deaths have been recorded since the floods struck a week ago.

With the authorities absent from some of the worst-affected areas for days, an army of ordinary citizens travelled on foot to provide food, water and cleaning equipment to clear the mud.

Youths have been at the forefront of this wave of solidarity and were at work again in Catarroja on Wednesday, loading trucks with fresh supplies, an AFP journalist saw.

It was a far cry from stereotypes caricaturing the generation born in this millennium as self-centred “snowflakes” addicted to endless scrolling on social media.

“The elderly are always going to say that people who aren’t from their generation are worse,” said Angela Noblejas, a 19-year-old industrial engineering student.

“But now that they’ve given us an opportunity, that maybe they wouldn’t have given us, because it’s not a good situation, we young have responded pretty well.”

– ‘A real goal’ –

Noblejas and her fellow millennial friends spent Tuesday immersed in muck and debris in the town of Algemesi to aid the clean-up.

Her grandfather had told her of a 1957 flood that razed the Valencia region and killed dozens. Now Noblejas believes she is creating stories for her children and grandchildren.

“I think going, getting covered in mud, helping, will have been much better than telling them, ‘No, I stayed at home without doing anything’,” she said.

Her friend Gisela Huguet also dismissed the accusation that today’s young are always on their mobile phones avidly seeking the next “like”.

“We’re concerned about society,” the 19-year-old IT and mathematics student told AFP, saying the victims were “people from our town, people like us, university buddies”.

For Jose Antonio Lopez-Guitian, a 61-year-old humourist from the city of Valencia who has joined the volunteer mobilisation, modern youths are “soft” because they live in “times that are perhaps not so hard”.

“They are people of their time, and with their mobiles there’s no reason why they should be like those who came before,” he said.

“Young people don’t have the chance to do something meaningful,” he said, but Spain’s greatest crisis in living memory has given them “a real goal, which above all is to help”.


Monday, October 07, 2024

AMERIKA
How ‘Snowflake Babies’ Could Change IVF Politics

Joanna Weiss
Sun, October 6, 2024



Nearly three years into her marriage, Emily Berning suspected there was some reason why she wasn’t getting pregnant. A few highly unpleasant tests at a fertility clinic gave her the answer: Her fallopian tubes were blocked. It was a cruel irony for a onetime college anti-abortion activist who now runs an anti-abortion charity out of her Florida home.

“I really was sad about the idea of not being able to experience pregnancy,” she says. “Especially since we work with so many pregnant women — I think it’s absolutely beautiful.” But Berning didn’t want a risky surgery to unblock her tubes. And she felt uneasy about in vitro fertilization, or IVF. She firmly believes that life begins at conception, and she didn’t feel right about creating embryos that might later be destroyed.

One day, her mother-in-law, listening to a Focus on the Family radio show, discovered a path to parenthood that Berning had never imagined. An adoption agency called Nightlight Christian Adoptions had a program called Snowflakes, which specialized in donations of embryos left over from IVF. Berning could take possession of an embryo from another couple’s fertility procedure, implant it in her uterus, and give birth to the baby herself.

In some circles, these children are known as “snowflake babies,” a term Nightlight coined in reference to the way IVF embryos are stored, in subzero temperatures. They represent a small sliver of the assisted-reproduction landscape, their births largely facilitated by faith-based agencies.

And for two decades, they’ve been political symbols, used to bolster arguments about the beginning of life. In 2005, then-President George W. Bush invited 21 “snowflake babies” to the White House to underscore his opposition to stem cell research that destroyed embryos in the process of studying diseases. In 2022, the first-ever “snowflake baby” filed an Amicus brief in the Dobbs case that brought about the end of Roe v. Wade, arguing that her very existence proves that life starts at fertilization.

But now, people on both sides of the abortion wars are embracing embryo donation — not as a weapon, but as a uniting force. The practice has long been embraced by Christian families who might otherwise have qualms about IVF, because it can be seen as a solution to the most troubling part of the process: the disposal of frozen embryos. Lately, though, some advocates have been trying to spread the word about embryo donation beyond religious communities. Removing the Christian wrapping, these advocates say, would attract nontraditional families, raise hopes for would-be parents and promote an option that’s vastly more affordable than IVF.

It all points to embryo donation as one answer to a complicated moral and political calculus.

“Most people don’t know that embryo donation exists, either as a donor or a recipient. They’re just not aware. And most people will say, ‘I wish I knew about this sooner,’” says Deb Roberts, a single mother and abortion-rights supporter who gave birth to two children from donated embryos — and went on to found a non-faith-based embryo-donation agency.

I spoke this year to Berning, Roberts and other parents from across the political spectrum who have given or received IVF embryos. Their urgency to promote this practice has grown since the Dobbs decision, which encouraged some anti-abortion activists to set their sights on IVF. Last summer, the Southern Baptist Convention, the nation’s second-largest Christian denomination, passed a resolution opposing IVF. Politicians have stepped in, prompting the usual partisan squabbles: In the U.S. Senate, Republicans recently blocked a Democratic bill to protect IVF, calling it a political stunt, while Democrats accused them of putting fertility treatments in jeopardy.

But many embryo donation advocates are thinking beyond politics and are focused on the practical. What IVF represents, above all, is a path to parenthood — and in that deeply held, bipartisan desire, there’s ample room for common ground. “We do believe that these embryos are little lives that are just waiting for a chance to be born,” says Beth Button, executive director of Snowflakes. But “quite honestly, this is an option that anyone can consider — regardless of where they believe, on the spectrum, life begins.”

The vast reserve of frozen embryos in the U.S. — some estimate there are as many as 1.6 million — is an unintended consequence of IVF, a once-revolutionary, now-commonplace procedure pioneered in the 1970s. It begins when doctors surgically remove an egg from a fertility patient's body, fertilize it with sperm in a petri dish, and allow it to divide and grow. After five or six days, when it has divided into 100 to 200 cells and is technically known as a blastocyst, the embryo is transferred into a uterus, where it may or may not develop into a pregnancy.

The process is inexact enough, and costly enough, that fertility patients regularly create more embryos than they’re likely to use, leaving them with extras, sometimes dozens of them, along with a challenging set of options. They can dispose of the embryos. They can donate them to medical research. Or they can store them in canisters of liquid nitrogen at -321 degrees Fahrenheit, for months or years or even decades, at a cost of $500 to $1,000 per year.

The status of those embryos, in cryogenic limbo, has vexed some religious conservatives for decades. Louisiana has a law preventing the destruction of embryos, forcing fertility clinics to store their embryos out of state. Within the Catholic Church — which officially forbids IVF — ethicists have debated whether it’s in an embryo’s best interest to stay frozen forever, and questioned whether destroying an embryo is equivalent to taking an adult off life support.

But many religious couples have used IVF to build their families; Button notes that, despite any edicts from Rome, there are plenty of Catholics among her Snowflakes donors and recipients. Indeed, the concept of “embryo adoption” began in the 1980s with a deeply religious couple that had gone through unsuccessful fertility treatments. They asked their clinic if they could use another family’s embryos, but they wanted to know the family’s medical history, which health care privacy laws didn’t allow. And, more pointedly, they wanted to treat the embryos as lives, ready to be placed in a new home.

So they approached the director of Nightlight Christian Adoptions, who happened to be a friend. The agency helped create an agreement that would embed a property transfer — because, in every state, embryos are technically property — into a process that looked and sounded like adoption.

To do that, Snowflakes developed a detailed matching process to link donors and recipients. Families create presentations about themselves. They list their preferences for a matching family’s race, religion and marital status, and cite the level of communication they’d want after a baby is born (many choose ongoing relationships, sharing photos and videos and even planning visits). Donors submit blood work and provide a medical history. Recipients submit to a home study.

“We’re vetting families,” Button explains, “and this is giving peace of mind to the families placing embryos with us.”

On its website, the American Society for Reproductive Medicine says that using adoption terminology to describe embryo donation is “inaccurate and misleading.” But many self-described “snowflake families” say the adoption framework is what drew them to the program and helped them work through the complex emotions involved.

After Sterling and Eileen Osborn, a couple in Connecticut, gave birth to two boys through IVF, they were stunned to learn that they had five extra embryos and a wrenching new set of decisions to make. Destroying the embryos “was not an option for us,” says Eileen, a former music teacher. “To me, it’s still a potential life, and I would want to give any child a chance to live.” Still, it was hard to get their heads around the implications of embryo donation. Could they bring themselves to part with their genetic material? Did they have the moral right to choose who would parent their embryos? What if, later in life, their sons accidentally met their biological siblings?

“It’s an absolute emotional rollercoaster,” Sterling told me. “It’s as much of emotional rollercoaster as going through the initial process of IVF.” The Osborns wound up donating their embryos, through Snowflakes, to a couple in California. Months later, they got a notification that the couple had given birth to twins: a boy and a girl. “They’re people,” Eileen told me, describing how the news hit her. “They’re into this world now, there are pictures, and this is definitely real.”

Berning, 29, loved the idea of imagining embryos grown into people. She and her husband founded a nonprofit called Let Them Live, which offers pregnant women money for food, rent and other bills, along with financial counseling, if they’ll pledge not to have abortions. Her extended family has experience with traditional adoption; Snowflakes seemed an extension of that idea.

“It didn’t make sense for us to create our own embryos when there are other embryos existing,” she says. “My husband and I are just huge advocates of life at every stage.”

When I asked her about the Southern Baptists’ resolution opposing IVF, Berning told me she’d thought hard about it and decided that she agrees. “The dignity for human beings trumps anyone’s desire to have a family, and that includes us,” she told me. “If there were no embryos to adopt, then that would be that.”

That’s why, amid the donation process, she’s struggled to square her desire to be a parent with the clinical realities of fertility medicine. “The casual language of ‘Oh, we can just discard them,’ or ‘Oh, your tissue transfer,’” she says. She hates the terminology around judging embryos’ viability, “where these ones are ‘low grade.’ I would never refer to a human being as ‘low grade’ and destined for destruction.”
 
Berning heard it all last year, after she acquired a set of 15 embryos and prepared for the implantation process. The embryos had been frozen in 1995, which meant that they were technically as old as she was. Thirteen stopped growing as soon as they were thawed. The remaining two were implanted.

Berning sent me a picture of herself, beaming as she holds up a picture of the embryos. But when she took a pregnancy test two weeks later, she learned the embryos hadn’t successfully implanted. She posted a video of herself on TikTok, sobbing when she got the news. They were going to have to try again.

It took Roberts multiple tries, too, before she was able to get pregnant via a donated embryo. A Colorado marketing executive who is single and Jewish, Roberts had gone through many unsuccessful IVF attempts by the time she was in her 40s. Calculating her age and the cost of the procedures, she realized that embryo donation might be her last, best chance at motherhood. But she found that fertility clinics lacked the time or expertise to match families, vet the embryos or manage the transfer process. She tried some faith-based embryo donation agencies; one turned her away because she wasn’t married and one told her she’d face a three-year wait. (Button says Snowflakes warns single parents and LGBTQ+ couples that they might have to wait to find a willing donor.)

So Roberts reached out to friends and acquaintances, posted a call for embryos on Facebook and got multiple offers of embryos to spare. She found lawyers to help navigate a combination of property law — accounting for the fact that human tissue can’t legally be bought or sold — and family law that would give her full custody of any children who resulted. She handled the logistics, at one point carting a canister of frozen embryos from one clinic to another in the front seat of her car, strapped into the seat belt.

She wound up giving birth to a son, and two years later, a daughter, from the same batch of embryos — “full biosiblings,” she calls them. Then she started her own agency, Embryo Connections, and set up a process that’s in many ways similar to Snowflakes’: questionnaires for placing families and “intended parents,” medical tests to track donors’ genetic history, evaluations to make sure only the most viable embryos are donated.

One difference is that Roberts doesn’t use the term “adoption.” (The process also doesn’t involve adoption law, she notes, so there are no legal provisions for typical adoption practices like visitation.) Still, she applied for a grant from a U.S. Department of Health and Human Services program called “Embryo Adoption Awareness and Services,” created by Congress in 2002 amid debates over stem cell research. The $1 million annual appropriation has traditionally gone to faith-based groups. But this year, Roberts’ agency is one of three secular recipients. The other two, Embryo Solution and Empower, are also led by battle-scarred veterans of IVF.

Collectively, their goal is to change embryo donation from a niche practice — of the roughly 133,000 embryos transferred through IVF in 2021, 2.4 percent had been donated, according to the CDC — to a widespread option. So far, their clients range from heterosexual married couples to gay men using surrogates, older single women whose own eggs aren’t viable, and couples who considered a sperm or egg donor but prefer “genetic equity”: each parent contributing equally, or not at all, to the genetic makeup of their child. Donation could also appeal to prospective parents who would consider traditional adoption but balk at the expense and the long waiting time, Roberts says.

Alena Wright, a neuroscience researcher in Wisconsin who runs Embryo Solution, says donation would help middle-class families who can’t easily spend tens of thousands of dollars on fertility procedures: Acquiring donated embryos costs around $10,000, compared with $20,000-$30,000 for a typical IVF cycle. “Research shows that only 25 percent of the U.S. population can afford IVF. Seventy-five percent cannot afford it,” Wright told me. “That’s shocking. That’s what motivates me. We’re not talking about a small marginalized group that’s underserved.”

For donors, the incentive is emotion, Roberts says. After going through a physically and emotionally torturous IVF process and emerging with a happy ending, many parents want to pay the gift forward. And they’re more likely to want to donate their embryos, she says, if they’ve put them through genetic testing that reveals their gender. “They feel like they’re more connected. Once you know the sex, it feels more like a person,” she says.

Still, she’s deliberate about her language. An embryo, she says, represents just one of many steps in a tenuous physical journey to life. The American Society of Reproductive Medicine notes that in natural reproduction, 70 percent of fertilized embryos don’t result in live births. Roberts knows, from her own long and painful experience, that many IVF embryos fail to grow, as well.

“They’re potential,” she says. “It’s not a question of ‘life begins at a certain point.’ It’s just that they have the potential to be children.”

That’s why she was dismayed at an Alabama Supreme Court ruling last February that equated embryos with children. “Do they really understand what an embryo is and what its success rates are in general, from fertilization to an actual positive pregnancy test and an actual first ultrasound? How many embryos are lost in that process?” Roberts says. “It seems to me that they really don’t understand IVF.”

The case, LePage v. Center for Reproductive Medicine, centered on a fertility clinic in Mobile where a patient wandered into a “cryogenic nursery,” opened a tank where IVF embryos were stored and picked up some containers. Shocked by pain from the cold, he dropped the containers on the floor, destroying the embryos in the process. Three patients sued the clinic under an 1872 Alabama law called the Wrongful Death of a Minor Act.

The state Supreme Court, overturning a trial court ruling, declared that the law “applies to all unborn children, regardless of their location.” Alabama fertility clinics immediately stopped operations, fearing liability, not just for accidents, but for the IVF process itself. Fertility doctors across the country fretted that their work could be in jeopardy.

Would-be embryo donors and recipients also panicked. Button says Snowflakes donors called to ask if their embryos would have to stay frozen forever. Wright says potential donors who had been on the fence signed up to start the process before it disappeared. Maya Grobel, who co-founded the agency Empower, heard from clients who wondered if they should ship their embryos to a “safe state.”

Republicans, in Alabama and across the country, quickly scrambled to proclaim their support for IVF. Within weeks, the Alabama Legislature had passed a law protecting fertility clinics from liability, though it didn’t address the thorny issue of the start of life. Every Republican U.S. senator signed a statement supporting access to the procedure, and Republican Sens. Katie Britt and Ted Cruz filed a bill last spring that would cut off Medicaid funding for states that ban IVF. Former President Donald Trump recently called himself a “leader on fertilization, IVF” and said he wants to make the process free.

But Trump’s stance has angered some anti-abortion conservatives. And those intra-party divisions are the consequence of a policy path that started 50 years ago with efforts to overturn Roe v. Wade, says Sean Tipton, director of policy and advocacy at the American Society for Reproductive Medicine.

“It’s a dilemma when you have hung your ideological hat on ‘the fertilized egg is a child’ and then people become aware of fertilized eggs in a freezer,” Tipton says. “Instead of saying ‘the fertilized egg is a baby,’ they now have to say, ‘the fertilized egg is a baby, but we love IVF’ … Because they can read opinion polls. They know everybody loves their grandchildren.”

Opinion polls indeed show broad support for IVF, including among Republicans; a Pew poll last May found that 70 percent of Americans, across religious and political lines, think access to IVF is “a good thing.”

But some embryo donation advocates, both religious and secular, agree that there might be ways to curb the number of new embryos that enter into storage every year. One anti-abortion lawyer described the fertility industry to me as the “wild, wild west of unregulation.” Wright notes that the U.S. doesn’t limit the number of embryos that can be created in any given cycle, as some other countries do. And both doctors and patients have incentives to create a large surplus of embryos — due to the cost, the physical stress of retrieving eggs and the high chance that a fertilized egg won’t make it through the process.

“There’s nothing to stop an embryologist from creating 30 embryos for a family in their 40s that only wants one kid,” Button says. “This is what we’re dealing with now, and embryo adoption is a great solution.” She says some donor families have told her that “if we had known about embryo adoption, we wouldn’t have done IVF. We would have come straight to Snowflakes.”
 
Roberts says she hears the same sentiment from some secular families: “Whether they’re religious or not, we get people who say, ‘There are so many embryos out there. Why would I create more?”

Roberts is surprised that, amid the current hand-wringing over IVF, more people aren’t talking about embryo donation. “I’ve been shocked at all the news coverage about ‘Can we destroy embryos?’ ‘What is the legal right for embryos?’ And nobody’s saying, ‘Well, what are the options?’” she says. “It’s weird that the conversations stop at ‘When does life begin?’ but not ‘What do we do in these situations on either side?’”

But those conversations are happening, at least in some meeting rooms and living rooms. Button pointed me toward a little-noticed line in the Southern Baptists’ anti-IVF resolution: Parents who are struggling with infertility should “consider adopting frozen embryos” instead.

And Berning, still working with Snowflakes, has acquired a new set of 10 embryos — frozen in 2006 — so she can start the process again. She’s getting ready for a transfer in January. “I’m hoping,” she told me, “this round will end up with having a beautiful baby.”

Wednesday, September 25, 2024

Opinion - Trump is at 48 percent. How could this be possible but for widespread racism?

Juan Williams, Opinion Contributor
Mon, September 23, 2024 



At this point, the racism is obvious. How else does it make sense that 48 percent of registered voters in last week’s Fox News poll say they have no problem putting Donald Trump back in the White House?

Who are these people who look the other way when their candidate tells a bold lie about Black immigrants eating a mostly white Ohio town’s cats and dogs?

How can it be that not a soul among the 48 percent cares that Trump’s vice-presidential pick, JD Vance, says it is okay to “create” racist lies about immigrants eating pets “so the American media actually pays attention”?

How can 48 percent of voters back a candidate who says immigrants coming from “infested” places are “poisoning the blood of our country?”

Is it just snowflakes who notice when one of Trump’s close allies says, “The White House will smell like curry” if Vice President Kamala Harris, the daughter of an Indian immigrant, wins the presidency?

Rep. Marjorie Taylor Greene (R- Ga.), no snowflake, condemned the comment as “appalling,” “racist” and “hateful.”

Do these voters also prefer to sail past Trump once calling a Black woman and former aide a “dog”? And he called Alvin Bragg, the Black Manhattan district attorney who successfully prosecuted him for business fraud, an “animal.”

Maybe Trump’s 48 percent don’t excuse his racism so much as get the message. They are inside a Republican Party that is 82 percent white. Most of those white Republicans are in small towns and rural areas.

“Beginning in the early 2010s — and accelerating during the presidency of Donald J. Trump…” The New York Times noted earlier this year, “white voters without a degree, increasingly moved toward the Republican Party. Nearly two-thirds of all white, non-college voters identify as Republicans or lean toward the Republican Party.”

This is the heart of Trump supporters who told YouGov pollsters they believe Trump is telling the truth about Haitian immigrants “abducting and eating pet dogs and cats.”

The YouGov polls also found that 80 percent of Trump supporters also buy his lie that Venezuela is “deliberately sending people from prisons and mental institutions” into the U.S. I wrote a 2018 book about Trump’s history of racism. Vice President Harris echoed the book’s research in talking last week of Trump’s racist past. She pointed back to his participation in the “birther” lie, the incendiary claim that the first Black president, President Obama, had not been born in the U.S.

Harris said Trump can’t be trusted to serve as president after “engaging in…hateful rhetoric that, as usual, is designed to divide us as a country…to have people pointing fingers at each other.”

In this year’s campaign, one of Trump’s regular dog-whistles at his rallies is his false claim that big cities, full of racial minorities and immigrants, are scary places full of crime and failure. Last week he flatly lied at a rally when he said a parent who leaves a child alone on the New York subway has “about a 75 percent chance that [they’ll] never see [their] child again. What the hell has happened here?”

Trump’s use of racism to stir up his white supporters was called out by writer Fran Lebowitz back in 2018. Trump, she wrote, has “allowed people to express their racism and bigotry in a way that they haven’t been able to in quite a while and they really love him for that…It’s a shocking thing to realize people love their hatred more than they care about their own actual lives.”

There are real consequences to all these racist lies. Last week, a Trump-supporting sheriff in Ohio encouraged people to report their neighbors who displayed Harris-Walz lawn signs. This incident called to mind parallels with police in Nazi Germany.

Widening the racial and political divide leads to alarm over possible violence. USA Today recently reported that more than one-third of Republicans who have a favorable view of Trump “say political violence is acceptable.”

According to a new Deseret News-HarrisX poll, 77 percent of U.S. voters say they are “very” or “somewhat” concerned about political violence before Election Day, including 80 percent of Republicans and 82 percent of Democrats.

“We are seeing an unprecedented and extremely disturbing level of threats of violence and violence against public officials,” Deputy Attorney General Lisa Monaco said last week in a speech.

The 48 percent backing Trump try to move away from his racism by talking about the need for a better economy. But Trump’s main economic plan is to impose tariffs that will drive up prices. He has no plan to improve health care or provide more affordable housing.

It was less than 30 years ago when Bob Dole, the 1996 Republican presidential nominee, stared down racism in the GOP. “If there’s anyone who has mistakenly attached themselves to our party in the belief that we are not open to citizens of every race and religion…,” Dole said at the 1996 convention, “the exits, which are clearly marked, are for you to walk out of as I stand this ground without compromise.”

Where are those Republicans now?

Juan Williams is an author and a political analyst for Fox News Channel.

Copyright 2024 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

For the latest news, weather, sports, and streaming video, head to The Hill.

Monday, September 09, 2024

Gene therapy restores vision in first-ever trial for rare, inherited blindness



Patients born with a certain genetic blindness experienced the world in an entirely new way after a single treatment with gene therapy developed at UF.


University of Florida




After the treatment, one patient saw her first star. Another saw snowflakes for the first time. Other patients were newly able to navigate outside of the home or to read the labels on their child’s Halloween candy.

The cause of these seemingly miraculous improvements? A gene therapy developed by University of Florida scientists, which restored useful vision to most patients with the rare, inherited blindness known as Leber congenital amaurosis type I, or LCA1, in a small trial. 

Those who received the highest dose of the gene therapy saw up to a 10,000-fold improvement in their light sensitivity, were able to read more lines on an eye chart, and improved in their ability to navigate a standardized maze. For many patients, it was akin to finally turning on dim lights after trying to navigate their homes in the pitch black for years, the researchers said.

The trial also tested the safety profile of the treatment. Side effects were largely limited to minor surgical complications. The gene therapy itself caused mild inflammation that was treated with steroids.

“This is the first time that anyone with LCA1 has ever been treated, and we showed a very clean safety profile, and we also showed efficacy. These results pave the way for advancing the therapy in a phase 3 clinical trial and eventually commercializing it,” said Shannon Boye, Ph.D., chief of the Division of Cellular and Molecular Therapy at UF, co-author of the study and co-founder of Atsena Therapeutics, the UF spinoff that developed the gene therapy and funded the study.

“Atsena is pleased to advance the foundational work that Shannon and Sanford Boye developed in their laboratory many years ago and thrilled that the 12-month data from our ongoing clinical trial have been published in a prestigious medical journal,” said Kenji Fujita, M.D., chief medical officer of Atsena Therapeutics and co-author of the study. “We look forward to sharing further results from this program as we continue progressing what has the potential to be a breakthrough in treating blindness in children and adults with LCA1.”

Shannon Boye, UF professor of pediatrics and Sanford Boye, associate scientist of pediatrics, and their collaborators at the University of Pennsylvania and Oregon Health and Science University published the results of the clinical trial Sept. 5 in the journal The Lancet.

LCA1 is rare. Only about 3,000 people have the condition across both Europe and the U.S. It is caused by having two defective copies of the gene GUCY2D, which is required for the light-sensitive cells in the eyes to function properly. People with the disease tend to have severely impaired vision that makes it difficult or impossible to drive, read, or navigate the world visually. 

Shannon Boye has been developing the gene therapy targeting LCA1 for more than 20 years, since she enrolled as a graduate student at UF in 2001. In collaboration with her husband Sanford Boye, Shannon Boye’s lab developed the virus-based transport system that is essential for delivering functioning copies of the GUCY2D gene into the correct cells in the eyes. The Boyes founded Atsena Therapeutics in 2019 to bring the LCA1 treatment and other gene therapies to market.

“Most pharmaceutical companies are not interested in treating these rare diseases, because they are not strong revenue generators,” Sanford Boye said. “But we think these patients deserve attention, because we have treatments that work and provide really meaningful improvements to their quality of life.”

The study enrolled 15 subjects for treatment at the University of Pennsylvania or Oregon Health and Science University. Subjects received one of three different doses of the therapy to identify the safest and most effective dose for future trials. All patients received the treatment in one eye, which involved a surgical injection in the retina.

Researchers followed the patients for a year to test their vision in the treated eye compared to the untreated eye. Subjects who received higher doses saw greater improvements in their vision. 

The researchers expect the gene therapy to last indefinitely, requiring just a single treatment per eye. So far, they have seen visual improvements last at least five years.

Broad access to the treatment will require approval by the FDA following a phase 3 clinical trial, which tests the therapy in a larger population of patients. 

Monday, August 26, 2024

How Greenland Melts Holds Clues to Our Future

A melting pool of ice amid snowy peaks in Greenland
A melting pond atop Greenland’s ice sheet. Photo: Marco Tedesco

Few places afford a such a clear view of climate change as does Greenland, a frozen island in the Arctic about half the size of the United States, with a polar ice cap that’s three kilometers thick at its center. The melting of Greenland’s ice has accelerated over the past decades, and with it, rising sea levels. According to recent estimates, Greenland has lost around 270 billion tons of ice every year over the past few decades—equivalent to the weight of 26,000 Eiffel Towers—and which has contributed around 30-40% of the current global sea-level rise. Roughly half the ice loss occurs via ice calving at the ice sheet’s edge, while the other half happens through surface melting. Studying the reasons for the recent acceleration of Greenlandic surface melting and understanding the processes that control it are fundamental to improving estimates of what will happen to our oceans and the relative impact on our society.

This melting has occurred in tandem with the increase in CO2 emissions on a global scale, in stark contrast to the goals stated in the Paris Agreement, signed almost a decade ago. For this reason, understanding where and how quickly Greenland’s ice is melting is one of the keys to studying the effects of climate change on our planet, and the reason for a recent expedition to Greenland.

Marine and polar geophysicist Marco Tedesco standing on a field of ice
Marine and polar geophysicist Marco Tedesco standing on a field of blue ice. Photo: R. Antwerpen 

Accompanying me on this trip is Paolo Colosio, a young but highly trained research fellow at the University of Brescia and an expert in polar remote sensing; and Elizabeth Kolbert, a journalist who won the Pulitzer Prize in 2014 with her book, ‘The Sixth Extinction’. We will be staying in Kangerlussuaq, a town on the west coast with a population of around 500 people and the arrival point of international flights to Greenland. The Kangerlussuaq International Science Station (KISS) headquarters is here and will host us upon arrival. The temperature is pleasant, although experience teaches us that it could drop significantly and quickly as we get closer to the polar cap.

For previous expeditions, we have flown to the ice by helicopter. However, renting this transportation has become more challenging over the past years due to increased tourism in Greenland, which has driven up costs and reduced the availability of helicopters. This year, we reach the ice via a bumpy road built in the 1980s by a car company to test cars on the ice.

I have now exceeded a dozen expeditions to Greenland and I never tire of both the sight and the emotions of the first steps. The sound of the ice crushing under our heavy boots, the sight of the ice as far as the eye can see, simultaneously a lunar and yet familiar landscape, constantly triggering new emotions and raising scientific questions. It’s like being in the presence of an animal in danger of extinction, enormous and majestic but fragile under the attack of the tiny but powerful carbon dioxide molecules released by humans into the atmosphere. It is both a privilege and a curse to be here.

Meltwater flowing into a deep blue hole called a "moulin"
Meltwater flowing into a “moulin”—a vertical shaft that extends through a glacier and is carved by meltwater from the glacier’s surface. Photo: Marco Tedesco

New and more powerful satellites, combined with increasingly refined climate models and artificial intelligence, have recently allowed us to make giant leaps in understanding what drives melting in Greenland. Despite these advances, it is still essential to explore new technologies, so we can continue adding more pieces to the complicated climate puzzle, promote solutions and test ideas. Carrying out these studies is not a purely scientific exercise. It is essential both for the remote future (hundreds of years) and the more immediate one (10-20 years), given the disastrous physical and economic impacts to which the population and infrastructure will be exposed as the Earth morphs into a new state. We no longer even have to wait for the future to know what will happen to us in some areas of our planet: the most recent extreme weather events, floods and wildfires have already shown us how the fate of coastal residents around the world depends on what happens in Greenland. The Greenland ice sheet is a time machine that offers a photograph of the past through the memory of ice—and insight into what could happen to our planet and the cities we live in.

Drones are among the tools that make it possible to fill some of the most critical scientific gaps. They allow us to observe details within the ice that are not observable from satellites, and they offer an opportunity to discover or improve new processes that can be used within climate models. The drone we use in Greenland on this expedition collects images similar to those of a very high-resolution camera, along with other images that are invisible to our eyes but hold the secret of what is happening to the ice.

Ice covered by metamorphosed snow (dark in the infrared and invisible to our eyes) and light-absorbing material (soot, dust, algae, etc.)
Ice covered by “metamorphosed” snow (it appears dark in infrared light though invisible to our eyes) and light-absorbing material (soot, dust, algae, etc.). Photo: Marco Tedesco

At first glance, it is logical to assume that Greenland’s increased melting is due to rising global temperatures. Indeed, that is true, but there’s more going on. One thing that significantly controls the melting of Greenland ice is the amount of solar energy absorbed by the ice, a parameter called “albedo,” from the Latin albus, or whiteness. We all know the albedo effect and the difference it makes in staying cool when wearing a white t-shirt instead of a black one on a sunny day. The same applies to Greenland, which becomes darker (lower albedo) or lighter (higher albedo) depending on melt-freeze cycles and precipitation. Heavy snowfall is equivalent to wearing a white shirt, since fresh snow favors the reflection of solar radiation, “cooling” the frozen island. Increased melting and refreezing cycles (as has been happening over the past decades) also alter the albedo: the snow absorbs more solar radiation as they occur. This phenomenon is, nevertheless, invisible to our eyes, but if we could see in the infrared region, we would see the snow becoming increasingly dark as it melts more and more. The melting and refreezing cycles further favor melting, increasing the absorption of solar radiation, in a sort of “melting cannibalism” in which the snow eliminates itself.

The Greenland ice sheet is a time machine that offers a photograph of the past through the memory of ice—and insight into what could happen to our planet and the cities we live in.

We are freezing due to the strong wind coming down from the mountain of ice behind us. The wind does not make operations easier, and the work requires patience and stubbornness to operate the instruments. It is an effortless act in the office but an Olympic athlete’s stunt once on the ice. This same wind is also complicit in another phenomenon responsible for lowering the albedo in some areas, including where we are on this expedition. This time is it visible to our eyes, in the accumulation of substances such as ash, dust and sand on the frozen surface that makes the ice darker, favoring melting. The very fine material is deposited on the ice after being eroded by surrounding rocks or is caught by raindrops or snowflakes as they fall. Solar radiation heats the microscopic particles, forming small pools of water around them. These pools grow in size and depth, merge and give rise to micro-lakes ranging from a few centimeters to a few meters in length, in which the dark material composed of algae, bacteria, meteorite dust and other resilient animals continues to promote the melting of ice.

Aerial view of crevasses nearby the edge of the ice sheet
Aerial view of crevasses near the edge of the ice sheet. Photo: Marco Tedesco

It takes longer we expect to collect the data due to the “usual” unforeseen events: drone batteries that the shipping company ruined and now run out more quickly than we expect; strong winds that limit the autonomy of the drone; the difficulty in crossing streams and waterways that are visibly swollen due to melting; fingers that can’t secure a small screw because of the cold. But in the end, we succeed. It will take months to analyze the data. Still, the good news is that preliminary analysis confirms the possibility of improving climate models and satellite data extraction using the data collected by our drone in conjunction with artificial intelligence techniques. The bad news is that our data also confirms that the glacier has thinned by several meters, in contrast with previous years when the change was much smaller.

Making things worse is the recent alteration of atmospheric circulation in the Arctic. The recent decrease in albedo has been accompanied by an increase in the amount of solar energy that reaches the ice. Changes in the Arctic atmosphere associated with climate change favor an increase in the number of cloudless days along many areas where melting is already accelerating, providing more “gas” for melting. The decrease in albedo and the increase in solar radiation reaching the ice are accomplices in a climate crime against Greenland. If melting is the speed of a train, the albedo is the slope of the train track, and solar radiation the gas we give to the train. Increasing the downhill slope and adding more gas will make the train run faster, eventually making it unstoppable.

Despite being geographically isolated and far from many densely populated places, Greenland and the melting of its ice influence our lives through sea level rise and the compounding effects of increased extreme weather, flooding and storms. As we search for solutions to reduce emissions and capture greenhouse gases, we must continue to study processes that lead to understanding how to reduce the uncertainties associated with projections of sea-level rise, ensuring that the future we predict does not arrive earlier than we anticipate, with many cities and regions unprepared to tackle the consequences. The incredible acceleration of the melting of the Greenland ice sheet holds a mirror to society and affects us all. 

Stream (left) running among frozen hills covered by refrozen snow.
A stream running among frozen hills covered by refrozen snow. Photo: Marco Tedesco

Marco Tedesco is a research professor at the Lamont-Doherty Earth Observatory, which is part of the Columbia Climate School.