Science & Technology Archives - The World from PRX

Science & Technology Archives - The World from PRX

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Science & Technology Archives - The World from PRX episodes

  • Investigative report traces global reach of ‘revenge porn’ website

    From a court case in the US to a family home in New Zealand, a cross-border investigation by Bellingcat and The Press, a daily newspaper in New Zealand, tracks down the alleged owner of a “revenge porn” website.

    The World’s Host Marco Werman spoke to Bellingcat investigator Kolina Koltai, based in Seattle, and Michael Wright, a reporter with The Press, based in Christchurch, New Zealand.

    Click on the player to hear the full story.

    CONTENT WARNING: This interview concerns non-consensual sexual content and child sexual abuse material.

    The post Investigative report traces global reach of ‘revenge porn’ website appeared first on The World from PRX.

    0 min
  • The Afghan refugee who wants to go to space

    When US forces withdrew from Afghanistan, among the thousands trying to get out through the Kabul airport was a 15-year-old girl named Florence Pouya.

    Evacuees from Afghanistan wait with other evacuees to fly to the United States or another safe location in a makeshift departure gate inside a hanger at the United States Air Base in Ramstein, Germany, Sept. 1, 2021. More than a year after the Taliban takeover that saw thousands of Afghans rushing to Kabul’s international airport amid the chaotic U.S. withdrawal, Afghans at risk who failed to get on evacuation flights say they are still struggling to find safe and legal ways out of the country. Markus Schreiber/AP/File

    Today, five years later, Pouya is a rising sophomore at the Massachusetts Institute of Technology, or MIT. 

    Pouya had grown up with eight siblings in the western city of Herat. She was first turned on to tech when she was 12 years old and heard about the Afghan Girls’ Robotics Team.

    “When I first saw the news about the seven girls in the national team who would travel around the world, participate in the competitions [and] raise the flag of our country, I was so amazed,” she said. “I always would admire their work, talent and bravery, because in Afghanistan, it was such a big thing to do. Being the first girls to do something in engineering and STEM is just something very huge.”

    Team Afghanistan participates in the opening ceremony for the FIRST Global Challenge in Washington, Sunday, July 16, 2017. The six-girl robotics team from Afghanistan is attending the international competition in Washington, after clearing visa obstacles that prompted intervention from President Donald Trump. The three-day high school competition is the first annual robotics competition designed to encourage youths to pursue careers in math and science. Cliff Owen/AP/File

    Pouya wanted to be part of it, so when spots on the team opened up, she was one of the several hundred adolescents who applied.

    “They selected seven members for the national team, and I’m really happy that I was one of them,” she said. “I think my life began after that.”

    For a year, she was trained in robotics, and at age 13, she took her first international trip to a competition in Dubai. It was an exciting life, and public figures described the team as representing Afghanistan’s future. 

    Until the Taliban came back.

    Immediately, the robotics team was in the crosshairs of the extremist group.

    After the team and staff tried and failed twice to enter the Kabul airport, their co-founder, Roya Mahboob, made headway with foreign officials, and they were flown to Qatar.

    For almost two years, the Qatari government hosted the girls as they took classes and continued the robotics team’s activities, now with Pouya as captain. Until, one by one, each member left for a US college on a Qatari scholarship.

    Eventually, Pouya was accepted to MIT, where she’s been able to pursue a new passion.

    “When I was introduced to the idea of being an astronaut or working in space or building rockets,” she said, “that was like when you find your thing, and there’s not an ounce of doubt in your body, you’re so sure about it. That was my feeling toward being an astronaut.”

    It’s hard to believe how much has changed for Pouya and her country in just five years.

    Today, she talks regularly to friends in Afghanistan, even though it’s difficult to hear girls and women describe what it feels like to be confined to the house, unable to go to school or work or even the beauty salon.

    FILE – Afghan girls attend a religious school, which remained open since the last year’s Taliban takeover, in Kabul, Afghanistan, on Aug. 11, 2022. Two years after the Taliban banned girls from school beyond sixth grade, Afghanistan is the only country in the world with restrictions on female education. Now, the rights of Afghan women and children are on the agenda of the United Nations General Assembl, Sept. 18, 2023, in New York.

    It’s a situation few of her peers in the United States understand.

    Pouya working on a rocket motor in an MIT lab.Courtesy of Florence Pouya

    “ It just makes me sad sometimes that there are so many people around the world, or in the US, some of my friends, who don’t even know where Afghanistan is,” she said. “They don’t even know there is a country on this planet where girls are not allowed to go to school. There’s no school open in the whole entire country for girls after sixth grade.”

    Pouya wants to do what she can to help her loved ones and her country, but she knows it’s best not to agonize over what she can’t change.

    “I think the best I could do now is focusing on my school and my career and doing internships, gaining more experience, being a good leader,” she said.

    Last summer, she interned in San Diego at the defense technology company General Atomics. 

    This summer’s internship is at NASA’s Jet Propulsion Laboratory.

    Her good friend Shawn VanDiver, founder of AfghanEVAC, dropped her off at her dorm at the California Institute of Technology (Caltech). The two met in Qatar when VanDiver was introduced to the Afghan robotics team, and they reconnected in the US a few years later. He’s now one of the most outspoken advocates for Afghan refugees in the US.

    Florence Pouya is studying aerospace engineering at MIT. In this photo, she stands beside a rocket motor after a “static fire” test she did with the MIT rocket team.Courtesy of Florence Pouya

    “We’re excited to be heading to Caltech, which is insane,” he said. “It makes me so proud, in that I get to be a casual observer of this young woman who has faced extraordinary odds and is just doing it.”

    Weeks after the drop-off at her dorm, Pouya said how cool it was to be part of the team building a helicopter for Mars.

    “There are so many things that you would have to consider when you build a Mars helicopter,” she said, “because, you know, the gravity on Mars is very different than on Earth.”

    Pouya has never let go of a founding goal of the Afghan Girls Robotics Team: to prove to the world what an Afghan girl can do. 

    She has many more years of study and competitive hurdles ahead, but while the Taliban forces women to stay home, she’s on track to blast out of Earth’s atmosphere.

    The post The Afghan refugee who wants to go to space appeared first on The World from PRX.

    8 min
  • Pioneering marine scientist Sylvia Earle reflects on decades under the sea

    Sylvia Earle goes by several titles: oceanographer, explorer, pioneer. She was one of the first people ever to go scuba diving to gather scientific observations.

    Earle still uses scuba, “but I’ve also had a chance to live underwater 10 times, to actually be a part of the ocean.”

    Spending extensive time underwater became a hallmark of her seven-decade career. Over that time, she discovered a new plant species off the southeast coast of Africa, led the all-women team on the historic Tektite II project, living 50 feet underwater for two weeks, and earned the women’s record for the deepest untethered sea walk, a feat that led her to yet another title: Her Deepness.

    Sylvia Earle said she isn’t sure she’s earned this title, but she’s “certainly had the privilege of spending thousands of hours simply diving as a scientist.”

    Dr. Merrill True, aquanaut, presents the five-women team of aquanauts with a rum-filled pineapple after they left the decompression chamber off St. John Island in the US Virgin Islands, ending their two-week Tektite II mission 50 feet deep in Great Lameshur Bay, July 21, 1970. From left: Peggy Lucas, Alina Szmant, group leader Dr. Sylvia Earle, Dr. Renate True (wife of Merrill) and Ann Hartline.Jim Bourdier/AP File Photo

    Those thousands of hours underwater have resulted in more than 200 research publications, including a landmark study on algae that defined the field for decades. In the 1990s, she was the first woman to serve as chief scientist at the National Oceanic and Atmospheric Administration, or NOAA, and since then she’s led innovation on the technical side of the field.

    “I’ve used more than 30 different kinds of submarines to be able to go down deeper,” Earle mentioned. “I’ve worked with engineers to create some remotely operated systems and also submersibles that can take anybody to see our planet from the inside out.”

    The World’s Host Carolyn Beeler recently asked Sylvia Earle what continues to drive her passion for the ocean.

    “Most of the ocean has yet to be seen by anybody — 0.001% has been seen,” Earle said. “So, there’s this vast, beautiful, sparkling ocean wilderness full of creatures that mostly we have yet to meet, let alone know who they are and how they fit into the greater scheme of making Earth habitable.”

    Carolyn Beeler: I understand that you were drawn to the ocean from quite a young age. Do you remember if there was a specific moment in your early life where that spark was ignited?Sylvia Earle: The first time I met the ocean, I got knocked over by a wave, and I got tumbled around a little bit, but when my toes touched the bottom, my head came out of the water and I could breathe, I realized, “That was fun.” And so, the ocean really did get my attention. But what has held it and still excites me every time I get into the ocean, it’s life. Knowing that the ocean itself, the water, is filled with life, that we’re just beginning to have the capacity to see the microscopic life that is swimming around in what seems like clear water.
    I understand it was around when you were in college that you had your first scuba dive.Yes. 1953.
    When scuba technology was still relatively new, can you tell us what that first dive was like, if there’s a particular image or a particular feeling that you still remember?The delight of actually being able to breathe underwater. It’s so counterintuitive, but it seems miraculous. And then you just quickly, at least for me, you accept that and then you start moving around and realize you can stay there and get acquainted with the creatures who are there. Fish want to see, “Who are you? What are you doing here?” And even the big creatures like sea lions, seals, whales, they’ll come over, check you out. It’s kind of unnerving sometimes.
    The five women aquanauts in the Tektite II Project stand beside the Great Lameshur Bay on St. John, the Virgin Islands on July 6, 1970, where they will start experiment on Monday. From left are: Dr. Renate True, Aline Szmant, Dr. Sylvia Earle Meade, the group’s leader; Ann Hartline and Peggy Lucas. Jim Bourdier/AP File Photo
    But fascinating, I’m sure. You go down into the ocean not as a tourist, but with a mission. You’re a researcher, a writer, a speaker, and you have been doing all those things in ocean work since that very first dive. This is a big question, but I hope to have you tell us, how has the ocean changed from that day of your very first dive until now?I can try. I can say that we have learned more since the middle of the 20th century. We’ve learned more because we have technology to go deep in the sea. But during the same period of time, again, it’s technology that has enabled us to consume nature on a scale that is unprecedented. Half the coral reefs are gone. Albatrosses and other seabirds are down to a fraction of their numbers when I started diving. Some of the estimates are about half of the life that was there. Think tunas. Think cod. Think swordfish. Think sharks. We’ve been able, using technology, to find, capture, kill.

    In the process of capturing, say, tuna, you capture a host of other creatures, like dolphins, that are captured right along with those that are going to market. They call this bycatch. It’s legal. It’s recognized that it’s okay to kill a lot of things in the process of taking those that we want to take to market. So the question is, “Where is this taking us? What does the extraction of whales mean to the carbon cycle, to the chemistry of the planet?” You’ve disrupted the natural systems that make Earth habitable. It just — we’ve been chopping away not just trees on land, but chopping away at life in the ocean. We need nature, but now nature needs us.
    Sylvia, as I mentioned, you spent the first part of your career dedicated to studying and exploring the ocean and eventually became the first female chief scientist at the National Oceanic and Atmospheric Administration. In the past decades, though, you have been more focused on advocacy and marine protections. And related to what we were just talking about, what sparked that shift? Was it that realization of everything we, as humans, were doing to the oceans?I don’t think of myself as an advocate. I think of myself as a messenger. I get to see things that others have not. And you can’t care if you don’t know. That’s my role, I think, to try to share the view. Now, not everybody knows what is there to be known, but the knowledge is not only there, but more accessible. Kids can carry computers in their pockets, talk to others, access information to the point where knowledge becomes universal, available, and at a time when we still have an opportunity, and we can do something about it.
    You mentioned that knowledge about the oceans is a lot more accessible than it used to be, and more people have a better understanding of how important they are to us, although, of course, that’s not a complete understanding. Where else are you seeing bright spots? Where else are you seeing momentum for ocean protection, which is something you work on a lot now?Great, good news. Last year, the so-called High Seas Treaty, it got enough nations to sign up to bring it into effect, to legally commit nations to protection of at least 30% safeguarded — a high level of protection. It’s a big order because, right now, high protection for the ocean applies to only about 3%. So, we have to really put on the afterburners to get 10 times more protected at the scale that is needed to really seriously reverse some of the trends that we are now experiencing, the planetary boundaries that we are transgressing through consuming or transforming nature for human purposes, everything from excess carbon dioxide in the atmosphere to acidification of the ocean that is directly connected to that.

    Knowing the plastics, these innovative materials that didn’t exist when I was a child, now they’re everywhere, including in the air we breathe, the water we drink, in our bodies, and certainly in the ocean. This avalanche of, not just plastics, but other synthetic materials and changing the chemistry of the planet is probably not a smart thing to do. But we didn’t know. I am a part of the group called the Planetary Guardians that works with the scientists about the harm we have already generated. But this being the best chance we will ever have, to take what we now know, we’re not just empty guessing. We have evidence that reducing fossil fuels, there can be favorable consequences.
    On Dec. 19, 2016, Dr. Sylvia Earle stands beside a full-size mock-up of the Deep Water 2000 submersible at Deep Ocean Exploration and Research Marine in Alameda, Calif. Former NOAA chief scientist and founder of ocean advocacy group Mission Blue Earle said there are more environmentally sustainable and economically viable options than open-ocean aquaculture, which uses huge floating net-pens or submerged cages.Ben Margot/AP
    You have worked tirelessly on the oceans for decades, as we have said, and you speak with some amount of optimism about our ability to change their trajectory. But right now, climate change is making ocean acidification worse. The plastics you were just talking about continue to flow into the oceans by the millions of tons every year. Biodiversity is being lost. How do you continue to forge ahead with your work and not become dispirited when the metrics don’t look so great?Well, I think it’s starting with what I began with. We live in a time when we’re the beneficiaries of all preceding human knowledge, but never before the last half century or so has there been this rate of accelerated learning and knowledge. We’ve learned more in my lifetime at the same time that we have lost more than at any other time in history. And it’s the knowing that leads to caring, that leads to action. It’s, we know what to do. And while we continue to live our lives and continue basically what we’ve been doing, can we change? Can we find ways to inspire people to feel the privilege of being a 21st-century human being? We could not know, before the technology that now exists gave us the knowledge that we’re in trouble, but it’s not too late.

    Parts of this interview have been lightly edited for length and clarity.

    The post Pioneering marine scientist Sylvia Earle reflects on decades under the sea appeared first on The World from PRX.

    12 min
  • What tech powers a global walk?

    National Geographic Explorer Paul Salopek is a man on a 22,000-mile walk from Ethiopia to the southern tip of South America. He’s documenting it all in a project known as Out of Eden Walk.

    Walking the huge expanses in between involves a lot of setting up camp in the middle of nowhere. That might sound low-tech, but a job is still a job. 

    Salopek has to write, take photos and communicate with colleagues, including regular check-ins with The World. 

    “Every day I’m recording things. I’m taking photos, I’m recording audio, I’m recording video, I’m jotting notes, I’m doing interviews,” said Salopek. “And then once every week or two,  I have to kind of draw all this information together into a story.

    He joined Host Carolyn Beeler recently to peel back the curtain on the technology that keeps him connected even when he’s far from power outlets and cell towers.

    “I’m mainly a writer, but they often have, you know, visual elements. So I have to find a way both to record this stuff and to send it, right? From — it could be, you know, a 6,000-meter mountain pass in the Himalayas, or more recently, a desolate coastline in Alaska, where the nearest plug and the nearest Wi-Fi signal might be hundreds of kilometers away. It’s a challenge.”

    Carolyn Beeler: So how do you get around that?Paul Salopek: Well, it’s changed over time. If you want, I can give you kind of a little outline of what I carried in my rucksack at the beginning versus today.
    Please, yes. Let’s start with Ethiopia 2013. What were you carrying to communicate?So we’re talking 7 kilograms, or about 15 pounds of stuff. Everything from like a MacBook Air, kind of the smallest available laptop. For satellite technology, I had a beacon. Remember the beacons? They’re the size of a plate. I don’t even know if they still make them, Carolyn, but basically they weighed about as much as a laptop, and you pointed at the sky, and it was expensive. You know, my editors were saying don’t leave it turned on. It was, I think, $7 per megabyte back then. Now, for $50, using Starlink, you can send 100 gigabytes. I carried a satellite phone. I had a digital kind of camera, a great camera, a Canon, but it was like one of those bricks. I had a digital audio recorder, external power banks and solar panels too. And all this stuff used up maybe half of my pack.

    Today, all these years later, I’m on one platform. I’m on a smartphone, basically. That’s where I do my video, my visuals and my audio. I even take notes on it sometimes. So yeah, it’s gone from 15 pounds down to 6 ounces.
    So all of that stuff — your satellite phone, your internet connection, your laptop — you’ve replaced with just your smartphone?For two reasons. One is just riding this wave of miniaturization. God knows by the time I reach Tierra del Fuego, I might have some implant in my eye and just blink and take a picture, right? I won’t do that. But the other thing is, the world is simply getting more and more wired. When I started out walking, getting a cell signal was kind of a rarity that was kind of limited to big cities and highways. Today, there are cell towers everywhere. One example: China. I walked through the hinterlands of China for two and a half years. The time that I had off-grid was one day. It’s just that wired.

    So today it’s a laptop and a smartphone, and I still do carry a Zoom recorder, and that’s about it.
    Zoom recorder, for example, to record your end of these conversations that we have.Yes, yes, that’s right. And, and there’s — I’ll add one more kind of anthropological little detail. Imagine when you and I were starting out [as journalists], whenever in our careers, and we had to carry all this equipment, coming up to somebody’s house and just poking all this technology into somebody’s face. It was intimidating for that poor person, right? And you had to kind of prepare them for it. Today, everybody is carrying a smartphone. And so when I’ve reduced my technological burden, literally and kind of figuratively, there’s no barrier anymore because people are recording their lives so much themselves that one skinny guy walking through the landscape and taking pictures with his phone causes no ripples at all, right? That’s one advantage of you kind of simplifying this technology.
    Yeah. So, when you sit down to write, what does that look like? Are you in the borrowed bed in the guest room [of] the people who are putting you up for the night, or are you kind of setting up your mobile office on the side of the road somewhere?Yeah, when I’m lucky, I’m settling into somebody’s guest room. Sometimes it’s inside caves, using a headlamp and its battery’s dying. It could be inside a tent. It’s a challenge, I must say. I’ve always asserted that on this project, the walking is the easy part, and the writing and the journalism is the hard part, by far.
    Yeah, so you walk for a couple of weeks, then you write something up. How do you sit down and synthesize everything that you’ve seen over two weeks into, you know, some sort of article with a theme?I’m still an analog guy, in that I carry a notepad with me all the time. I’m addicted to taking handwritten notes. Could be some idea, it could be something I’ve seen. So I know that my kind of narrative biorhythm is, like, once every week or two weeks, I need to produce something. So that tension’s building up as the kilometers roll under my feet, and by the time I know that my editor is waiting for something, I have to sit down and go through my notes, these handwritten notes, and by then, usually I figure out like two or three issues. What is the most interesting one? It could be the portrait of a fascinating individual. It could be something political. It could be something more lyrical, metaphorical. Um, so that’s how it happens. It’s kind of this organic building up.
    Have you ever wondered what this walk would be like if you were not staying so connected?Yes. And this is the paradox: There’s a tension that’s built into this project, because as you know, slowness is the mantra. Yet because I’m a journalist in this century, I have to use very high-speed means of getting my work out. So that’s always been a tension, kind of psychologically and intellectually. But you know, as I progress now, and I’ve got maybe two or three years left, I’m inclined more and more to kind of continue to do the work but find ways that it’s not so intrusive in my kind of days on the trail. And I still haven’t quite figured out what it means.
    By intrusive, do you mean taking you out of the moment, or being intrusive to the people you’re interacting with?Both. Yeah, both. This is another thing that people may not realize if they haven’t, you know, spent time with reporters is we’re information consumers. So, you know, when I do have a phone signal, I — here’s my practice: I always walk with the phone turned off, you know, kind of regardless. I mean, like, on airplane mode. I’m not looking at social media. I’m not scrolling the news wires. I do that at night, but I still do it, right? And so I could be in a one-man tent on a beautiful bay, a glacial bay in Alaska, and then if there’s a signal, my instinct is to see what’s happening in the news in that part of Alaska, because it might be the source of a story idea.

    Parts of this convo have been lightly edited for length and clarity.

    Writer and National Geographic Explorer Paul Salopek has embarked on a 24,000-mile storytelling trek across the world called the “Out of Eden Walk.” The National Geographic Society, committed to illuminating and protecting the wonders of our world, has funded Salopek’s project since 2013. Explore the project here. Follow the journey on X at @PaulSalopek, @outofedenwalk.

    The post What tech powers a global walk? appeared first on The World from PRX.

    8 min
  • Global climate litigation is increasingly targeting data centers

    AI is everywhere. ChatGPT, Claude, the Google summary that pops up every time you type something into the search bar.

    AI also comes with data centers, massive facilities that house the physical infrastructure that runs much of our online world, increasingly including AI. But data centers require incredible amounts of space, electricity and water to operate.

    So, now communities across the globe that oppose them are using legal channels to stop this. New analysis from the London School of Economics found that, globally, the number of lawsuits targeting data centers is increasing.

    Eoin Jackson is an attorney with the school who conducted the research at the heart of that analysis. He says one of the key points of contention is a data center’s energy source.

    “To power the data centers, many of the developers and many of the tech companies have turned to fossil fuels, and that has raised significant environmental, health, climate concerns, both in the United States and across the world.”

    He spoke with The World’s Host Marco Werman about the concerns.

    Alexandra Crawford holds a sign outside a planning commission meeting, June 11, 2026, in Nashville, Tenn. The commission will consider an ordinance regulating data centers. George Walker IV/AP
    Marco Werman: How big of an increase in these lawsuits are we looking at?Eoin Jackson: So far, we’ve seen a significant increase since approximately 2020. And as you’ve noted, the rise of AI in the past two to three years has further increased the rate of data center litigation as the rate of data center construction has gone up across the world. And in turn, litigation is slow. It takes time to reach the courts. We’re now seeing the courts issue their first decisions, saying, in effect, that data centers must take account of environmental and climate impacts during their construction and throughout their operations.
    I mean, anecdotally, I want to say the data center debate seemed to start a little more than a year and a half ago with the rapid rise of AI technology. But in terms of lawsuits taking them on, did you see a sudden recent jump?The first identifiable case to challenge a data center on climate grounds we’ve identified as being one from Chile in 2020. This was in relation to a project being undertaken by Google. The court in that case said that the data center must take account of its climate impacts if it was to go ahead. So, even in 2020, big tech was already trying to increase their use of data centers. But of course, the rise of AI has effectively supercharged the demand for them. And as a result, courts in Ireland, in the United Kingdom, in California are increasingly being forced to consider these questions and determine whether and how to balance the demand for AI and the demand for data centers with the underlying environmental, climate and health concerns.
    What was the big issue that concerned people in that community in Chile? Was it water, electricity?The primary concern was to do with the level of water consumption. The local residents were concerned that the data center would in effect take up a lot of the city’s water supply. And furthermore, that water supply was already under threat as a result of climate change. So, their argument was that in granting permission for that data center, there had been a failure to consider both the impact on the water supply to the local community and, in turn, the impact of climate change on that water supply on the whole, creating kind of a dual challenge for the community.
    Obviously, each case is going to be different based on the country, the legal system, the project involved, but are there any trends that you’re seeing across these lawsuits? Like similarities in what’s being argued?There are certainly a lot of similarities. There are a lot of efforts to highlight the local environmental impacts that data centers can have. Cases in the UK, in Ireland, in Virginia have all cited, for example, the impacts on water consumption. Increasingly, we are seeing efforts to highlight the climate impacts of these data centers. So, litigators in California, the UK, Chile have all noted that the use of fossil fuels by these data centers will compromise our efforts to stay below 1.5 degrees Celsius as part of our global, national and regional climate commitments. So, there’s an increased recognition that data centers pose a significant environmental threat. And as you noted, how courts deal with this will depend entirely on which jurisdiction we are in, but litigators are often arriving at the same conclusions and bringing the same set of arguments to the courts.
    Construction continues at Entergy’s Orange County Advanced Power Station, a 1,215-megawatt facility, Feb. 24, 2025, in Orange, Texas.David J. Phillip/AP
    Well, we’re seeing a lot of this in Southern California with a big debate over a data center in the desert, which is obviously water-deprived. I’m curious, what has been the success rate of legal pushback in these cases?The success rate remains to be determined. We’ve seen some individual successes in Chile, but many of the cases in question remain pending. And thus far, it’s a little bit too early to say what the exact success rate will be.
    Also, I’m wondering, data center developers, if they face lawsuits, do they simply look for other places that are amenable to putting one up in their backyard?Yes. And this is one of the challenges when you’re dealing with big tech companies that operate all over the globe. As we see challenges develop across different states, there is a likelihood that big tech will move data center applications to other states within the US. More generally, we’ve seen places like Ireland in Europe become a major hub due, in part, to relatively lax regulation on the part of the Irish government. So, oftentimes this litigation can become, in effect, playing whack-a-mole. You might knock out one, but it’s very likely that the tech company or the relevant developer will simply move to another location.
    Eoin, your analysis of what’s going on with the lawsuits and everything else you’ve been sharing with us, what does this information tell you about the global prevalence of data centers?It tells us that the more we use AI and the more reliance there is on AI, the more people are also becoming aware of the significant health impacts, environmental concerns, climate concerns that might come with the data centers needed to power AI. Some of these concerns can be addressed. What we’re seeing right now is a failure to put those mitigation and adaptation measures in place and, in turn, a shift to using the courts as a basis to try to force these companies these developers, these planning commissioners to try to integrate these concerns into their approval of these data centers.
    Visitors review DELTA’s AI Modular Data Center at the Computex Taipei exhibition, one of the world’s largest computer and technology expos, in Taipei, Taiwan, June 2, 2026. Chiang Ying-ying/AP
    You know, Eoin, I see people now regularly and casually asking questions into their phones and getting their answers seconds later. The convenience of AI is undeniable, but you’ve also highlighted the big downsides: health, climate, environment. So, is this a challenge as you see it, convenience versus real quality-of-life issues? And in the long run, who wins?That’s a great question. I think this is a challenge with solutions that are available to us already. We can, for example, ensure that data centers are approved in appropriate places with appropriate consultations with the local community. We can ensure that data centers run on renewable sources of electricity, and we can ensure that the environmental impacts of data centers are recognized, considered and protected against. The problem right now is we are simply not doing that. So that is largely down to convenience. It is also down in part to a failure on the part of regulators and politicians to take adequate account of these impacts. But this kind of litigation can help to raise awareness of these impacts and raise awareness of the solutions that already exist and that can be put in place to mitigate against some of the harm.

    Parts of this interview have been lightly edited for length and clarity.

    The post Global climate litigation is increasingly targeting data centers appeared first on The World from PRX.

    8 min
  • A scientific breakthrough for spinal injuries is emerging in Brazil

    Bruno Freitas was an active and lively 23-year-old when he went on a road trip with his parents in 2018. He was sleeping as his father drove, and they got into an accident. As he woke up in the hospital, Freitas “was with no movements, and that was very hard mentally [speaking]… I had a complete spinal cord injury.”

    Bruno Freitas before his accident, during a trip to the sand dunes.Courtesy of Bruno Freitas

    His diagnosis was tetraplegia, meaning he had no movement from the neck down. However, before Freitas woke up, doctors gave him a trial treatment that his family agreed to. A protein called Polylaminin was injected into his spinal cord. 

    Freitas told The World that three weeks after his surgery, he experienced his first movement. “That was my big toe on my right foot. And it was a victory when I had this movement.”

    Bruno Freitas during his hospitalization after his accident.Courtesy of Bruno Freitas

    After two years of intense physiotherapy and with support from his family, he regained more movement and eventually made a full recovery. This was seen as revolutionary. 

    Unlike skin or muscle, damaged nerve fibers in the brain and spinal cord usually don’t regenerate on their own, making spinal cord injury a permanent condition. But this wasn’t the case for Freitas.

     “My diagnosis was tetraplegia, and I’m here walking. I can work, I can go to the gym, I can ride a bike, I can drive, and I can cook. So, I believe it’s the dream of a lot of people with this injury.”

    The process of developing this treatment began more than 20 years ago. Dr. Tatiana Sampaio was studying a protein called laminin, found in human placentas. She was changing the protein’s pH when it began organizing into larger structures.

    According to her, “this was exactly the moment when I realized that something special was happening, was going on. And then it took me two decades to understand what it was.” Sampaio began to wonder whether polylaminin, the synthetic version of the protein, could be used to reestablish the connection between the spinal cord and the brain. To test this, she would need as much help as possible. 

    Tatiana Sampaio looks into a microscope while studying polylaminin, June 12, 2026.Courtesy of Tatiana Sampaio

    Inside Brazil’s public university system, Sampaio had fewer resources than US research centers. But she did have students and collaborators who believed the work mattered. “In here, people are more ideological, I think,” Sampaio said. “Not everywhere, but it’s easier to find people who really believe that what they say they are doing is really what they are doing.”

    João Menezes, a Brazilian scientist who collaborated with Sampaio on her early studies, said the treatment was developed thanks to a broad, multidisciplinary network, centered on the promise of Sampaio’s earliest findings.

    “The nice thing about Tatiana, the nice thing about this project, is that she managed to interest a lot of us,” Mendes said. “She enrolled 20 people, maybe more, 30 or 40 people helped her.”

    The team moved from testing polylamanin in cells to testing in animals, and finally in humans. That’s when Bruno Freitas got the treatment.

    As his story spread, the treatment attracted attention from patients and families desperate for options, even though polylamanin is still experimental.

    Patients who got the treatment after Freitas are showing significant progress. Sampaio has not reached absolute conclusions, but she’s optimistic.

    Tatiana Sampaio studies polylaminin at her computer on June 12, 2026. Courtesy of Tatiana Sampaio.

    “This is not considered proof or scientific proof, but this shows something, right?” she said. “Because of this information, because of this result, people became very excited and interested and hopeful. … People decided to believe and to have hope. And I think this is okay. And I think that scientists will have to wait to see what’s going to come out of this.”

    And they may have to wait a long time.

    Clinical trials to move the treatment to wider use have begun. Some patients are even going to court to try to participate in trials, even as questions remain about who should qualify.

    Susan Harkema is a spinal cord injury expert who was not involved in Sampaio’s work. She said the time between experimental success and routine treatment is significant, and “it’s not just simply, you do landmark science and show something very promising. There is still a very long way to get to something scalable.”

    If the treatment gets approved, Sampaio aims to distribute it through the Brazilian public health system. That would reduce the amount of money she makes, but increase the number of people who can access treatment. Even then, it would only be available to people who have just suffered an accident.

    Bruno Freitas with researcher Tatiana Sampaio at the Cariocas do Ano event. Photo courtesy of Bruno Freitas

    “The most important thing people have to keep in mind is that there is nothing we can do at the moment for people who already have a spinal cord injury,” Sampaio explained. “We are working for this, we hope that we will get there, but we are still on the way.

    According to Sampaio, that uncertainty is not a reason to abandon hope, but hope has to stay grounded in science. “I think that science is very useful, and it’s good, and it helps people, and we should use it, but I’m not a devotee of it. It’s not a religion for me. It’s just science. It’s an activity, not a religion.”

    Bruno Freitas’ recovery has changed what many people previously thought was impossible. For now, the treatment stands not as a miracle cure or as false hope, but as science still in progress. 

    The post A scientific breakthrough for spinal injuries is emerging in Brazil appeared first on The World from PRX.

    8 min
  • New book, ‘The Yahoo Boys,’ explores the world of Nigerian love scammers

    In the US, they’re called romance scammers. But in Nigeria, they are known as “Yahoo Boys” — that’s a reference to their Yahoo email addresses. They are young Nigerian hustlers who con lonely Americans and Europeans out of their money through online scams. In cafes and hotel rooms around Lagos, they chat endlessly on their phones with foreigners, angling for a payout.

    Spanish journalist Carlos Barragán wrote about them in his new book, “The Yahoo Boys: Real Life with the Love Scammers of Lagos.” It delves into how loneliness and economic inequality have fueled a major scam industry in Nigeria. Barragán joined The World’s Host Carolyn Beeler to discuss what he discovered.

    He began researching and reporting on the scams after his own family member was affected.

    “I’m the youngest of three brothers and my mom had been single for a long time. And in 2015, I told her, ‘Why don’t you join Tinder?'” Barragán said.

    He added that she didn’t use online dating apps at the time, so after he encouraged her, she met someone she thought was an American soldier, but who turned out to be a scammer. In her case, she didn’t lose money, but was very close to it. Other people, as Barragán found out, weren’t quite so lucky. His reporting started with trying to track down his mother’s scammer.

    Spanish journalist Carlos Barragán reporting in the Ikotun district of Lagos, Nigeria.Courtesy of Carlos Barragán
    Carolyn Beeler: You did not end up tracking him down, but you did spend a lot of time with other scammers in one neighborhood in Lagos. Before we get to their stories, I want to ask you, kind of, to describe what we’re talking about here. What do these scams look like that these scammers are pulling?Carlos Barragán: These are people who scour the internet for lonely people. And when I say the internet, it can be any social media. Mostly older people, but also younger people trying to connect with others. And they create these fake personas. Normally these [personas] are white people, and they try to engage with you in a conversation. In the past, we are aware of these Nigerian prince scams.

    But after a few decades in the early 2000s, they discovered that there was something much more profitable than greed, and that was loneliness. So, especially with the beginning of dating apps and with the loneliness epidemic that we have here in the Western world, more and more people showed up at these social dating apps, and these scammers engaged in conversations with them.

    They pretended that they were interested in them and they said “good morning” every morning. And what they are aiming at is just to build a relationship between the apps and the scammer, that is so powerful that the victim will end up sending money for a myriad of reasons. And that can be from paying the plane [ticket] so that the victim can finally meet their lover, or all the multiple excuses they come up with. So, in a way, they create a fake relationship. And once the victim is locked into that relationship, they come up with excuses to steal money from the victim.
    You spent, as I said, a lot of time with Yahoo Boys in this book, and they go through a boom-and-bust cycle. They get a payment from a victim, they spend all their money on hotels and drugs and women, they go broke, they repeat the cycle. One of the guys you profile goes through that cycle to an extreme. Chibuike, can you sketch out his rise and fall? How did he get into scamming, and then what happened from there?So first, it’s very important to understand, because when I first came to Lagos, I thought I was going to encounter a very sophisticated industry of scams. You know, you have those scams in other parts of the world. But what I discovered was the opposite. It was mostly young people, young men in their 20s, who were just learning from their older friends and older brothers how to fool Westerners, how to scam lonely people. So, in Chibuike’s case, he’s a guy from a very poor community with no dad and a mother who, in his own words, didn’t care for him.

    So, because he was looking for some sort of camaraderie with the people around him, he engaged in these scams as well, because older people in the neighborhood were doing exactly that. So, at the beginning, he didn’t make any money. He was just pretending to be a white man, scamming white women. And then he changed because sometimes these scammers pretend to be white women as well to scam other men. And he wasn’t getting any money until he decided to impersonate a WWE superstar named Cody Rhodes.

    And this was a surprise to me because what the scammers discovered is that impersonating a famous person can sometimes lead them to riches, since Americans and Europeans are eager to talk to their favorite celebrities.
    Carlos Barragán during an interview with Azeez, one of the main characters of his new book, who started scamming people at the age of 14.Courtesy of Carlos Barragán
    So, some people just, you know, are impersonating, but [as] somebody living in the next town over. But then there are these celeb scams, which are what you’re talking about here, where they impersonate somebody very famous. And that’s what Chibuike landed on as his lucrative scam.Exactly. I’ve encountered scammers who were impersonating [US President] Donald Trump, Elon Musk, Brad Pitt — you name it. In Chibuike’s case, he was doing WWE scams because his stepfather used to [watch] these fights. And in the end, he started talking to an Irish woman named Theresa. And the scam went on for years. At the beginning, she sent him 300 euros ($347), and that kept piling up until he had tens of thousands of euros. Of course, it came bit by bit, in his own words, and it came in the form of gift cards, as I explained in the book.

    But as you were saying before, it’s a very interesting way, the way they spend the money they are receiving, because you would think that some of these scammers would invest the money wisely to step out of their criminal activities. But in a way, these boys who I describe in the book, they come from very poor communities. And in these communities, sometimes they even struggle to find money to eat.

    And what they’ve seen is that older men, whenever they cash out, as they refer to getting money from a Westerner, they spend that money in the community. They go big; they buy bottles of champagne, they go to the club, they buy a car, to tell the community, “I’ve made it.”
    They’re showing off.That money, the community also develops ways to, if you want to call it, steal that money from the scammer, as well. So, the scammer gets scammed.
    So, Chibuike earns a lot of money off of this Irish woman. He is living in a hotel with his girlfriend. He’s doing a lot of drugs to help stay up and talk at all hours to his victim. He’s living pretty large. He’s spending a ton of money on his friends at clubs. And then he meets his downfall. He gets robbed. He assumes the girl he’s with has robbed him, cleaned him out of his hotel room, and eventually he ends up kind of strung out and homeless for a while, right?Yeah, exactly. Some people in the community would say he was doomed from the beginning, because that is popular knowledge in a place like Ikotun. They think that, in a way, they’re dealing with some sort of black magic, as they call it, and they will get the money and they will know riches and they will have a lot of people around them, but as fast as they came, they will leave. And in a way, that’s what happened to Chibuike. Of course, he denied to me engaging in any sort of black magic or juju, as they call it there.

    But it’s true that there was an element of irrationality in the way he spent the money, which is hard to fathom. Because the community, whenever they see that a small boy — Chibuike was 24, 25, maybe a bit older — has plenty of money, they just come to him. And Chibuike was very generous because he said he had felt lonely his whole life. So, you add this other layer of complexity to the scam. And all at the same time, he was scamming this Irish woman who was losing everything in her house and who was getting closer to a mental breakdown.
    You spend most of your time reporting with these Yahoo Boys in Nigeria, but you also track down one victim, Tricia, who is in the US, who goes to the extreme of pretending to die to escape her scammer. What did you draw from her story?Well, I followed the lead I had on one of the victims from one of the main characters, and this Yahoo boy thought that he had killed, in a way, this woman because he received a photo of her, and this woman is from Kentucky, and she was in a coffin. So, obviously, the Nigerian scammer was traumatized and gave me all the information. I started doing some investigating, and the reader will find a climactic moment when I meet this woman and realize she’s not dead.
    And we will leave that cliffhanger for readers to discover on their own if they want to. Carlos, you spent time in the Ikotun neighborhood in Lagos and described how the neighborhood was transformed by these Yahoo Boys and how they tend to spend their money in boutiques, hotels and clubs. Can you kind of describe what that looks like when you’re walking down the street?So, Ikotun is in the outskirts of Lagos, and Lagos is a city where the first characteristic that comes to mind is inequality. When you step out to the outskirts, mainly what you see is slum-like conditions. The citizens there, the people there, they don’t have potable water; they don’t have electricity most of the time; the roads are unpaved, so the conditions there are quite hard.

    When you see a boy, as I’ve seen, with gold rings in his two hands, stepping out of a Lexus car that might be $30,000 or $20,000, because obviously it’s secondhand, but it’s still an enormous amount of money for someone there — you need to understand that people there, they don’t even have $1 a day to eat. So, suddenly, you see this 16- or 17-year-old boy stepping out of that car. And in one case, we even saw one of these guys carrying a pillow because he wasn’t tall enough to see over the car’s windshield.
    Oh, wow.In this community, that is a very humble, hardworking community, these boys, you can spot them very easily. So in a way, obviously, the money that comes from the US in these scams completely transforms the community. And there are people in Ikotun that they think that the money is evil money because it’s leading these young boys into drugs to stay awake at night. There are people who think that actually this is the money that rightly belongs to the community because in a way America was built on slavery from slaves taken away from Nigeria. There is this debate in the community about the money. It’s very obvious once you start walking around the community, the impact it’s having.
    Carlos Barragán playing pool with Yahoo Boys at a hotel in Ikotun, Nigeria.Courtesy of Carlos Barragán
    And it sounds from your writing that it’s quite visible and there are a good number of people doing this. What did you find about how prevalent scamming is among Nigerian youth?Well, obviously, as anybody who’s tried to investigate crime knows, it’s very hard to put numbers to this. What we know is that romance scams are on the rise, especially in the last five years. I think it was 2022 or 2023 when the reported losses in America were $1.3 billion.
    $1.3 billion.So, listeners need to understand that [those are] only reported losses. And there was that separate study in Canada that said only 5% of cybercrimes get reported. Not all romance scams originate in Nigeria. In fact, the other hotspot is in Southeast Asia, where conditions are completely different. What I’m saying is that it’s very prevalent. And once you get to communities like Ikotun and start talking to young people who have no opportunity to attend places like the university, many of them engage in cybercrime.

    And I remember talking to a woman who was pregnant, and she was kind of jokingly saying, ‘As soon as my boy is born, I will tell him, ‘Come on, be quick, because I want you to do Yahoo Yahoo,’ which will bring money to the family.’
    Wow.So, in a context of deep poverty and rampant inflation, this socioeconomic crisis that you have all around Nigeria is becoming more and more prevalent. Of course, that doesn’t mean that all the young people are engaged, but it is quite prevalent.
    I was struck by this fact in your book. Chibuike, his main victim, Theresa sends about $300 on the first big payout, and that is more than he earned in 18 months of working at a factory. So, global economic disparity is a strong driver of this.Yeah, exactly. That’s the situation. Look, what the internet did was erase the borders that we have. So, these boys have phones because everyone there has one; it’s very cheap. And they see what we have; they see what people in the US have, what we have in Europe. So, suddenly, for them, 300 euros, which is still a fair amount of money for people here, changes everything.
    The other big factor you talk about, besides economics, that drives these scams is loneliness. Loneliness in the US and in Europe, and the victims sometimes seemed willing to suspend their disbelief because they found someone who was combating that loneliness for them. Can you talk a little bit more about that?Yeah, many scammers I talked to said they usually encountered certain clients, in their own words, because they talked about them as if they were psychologists or therapists. They were talking about their victims in a way that suggested they sometimes knew they were being scammed, or at least had suspicions. And it is very hard for any human being to accept that the person they love most is someone who is completely different from what they see.

    And it’s hard for victims to come out and say what they are going through because what they’re facing from society is disbelief or mockery or condescension. So, once you put all that into the mix, it’s very hard for victims to accept that the scammer is a scammer. And at the same time, they are meeting an emotional need they are not getting from family or friends: constant attention. It is a very powerful thing, as the scammer told me, to say “good morning” to someone every single morning.
    There is not really any discussion in your book about effective enforcement or changes in economic conditions in Nigeria. So, where do you see the Nigerian scam industry being in maybe five or 10 years?Well, I think that there are people way smarter than me who can prescribe policies to fix this. What I would say is that criminal underworlds evolve very fast, and once there is a new tactic on the street that is successful and profitable, it spreads like wildfire. So, I met a Yahoo girl that I described in the book, because women also engage in cybercrime, even though not as much as men. And she was already scamming women who were trying to adopt a baby. So, there are new ways to scam people. And I’m sure that, at least in the near future, the loneliness epidemic will stick with us. So, they will try to find new ways to take advantage of this. And obviously, in Nigeria, you need a long-term solution to improve the conditions of all these young people so they have better opportunities.

    This interview has been lightly edited and condensed for clarity.

    The post New book, ‘The Yahoo Boys,’ explores the world of Nigerian love scammers appeared first on The World from PRX.

    18 min
  • Hungary cracks down on BYD plant over forced labor allegations

    2026 has been a banner year for BYD. The EV juggernaut has overtaken Tesla as the globe’s top electric vehicle seller, opened new international factories and seen a huge boom in overseas sales amid spiking gasoline prices.

    To cap things off, the company recently partnered with none other than 007 himself as a global ambassador, releasing ads for BYD’s luxury sub-brand Denza, featuring actor Daniel Craig waxing poetic about a new era of electric vehicles.

    But this year has not been all roses for BYD. In March, the Washington Post uncovered court records alleging brutal conditions inside the car-maker’s Brazilian factory. That came just a few weeks before The World first reported on evidence of forced labor at the company’s new factory in Szeged, Hungary.

    Outdoor signage towers over the BYD factory, in Camacari, state of Bahia, Brazil, Jan. 27, 2024.Raphael Muller/AP/File photo

    An investigation conducted by the labor rights group China Labor Watch said the electric vehicle maker used a complex web of subcontractors that flew in Chinese migrant laborers to build the plant, alleging laborers consistently faced excessive hours, seven-day work weeks, withheld wages and fear of retaliation.

    The probe prompted Hungarian officials to conduct their own investigation. The findings haven’t yet been released, but a spokesperson for the county office where the BYD factory is located told The World in an email that authorities have sanctioned three companies associated with the factory’s construction and imposed a fine on one of them.

    “The [Csongrád-Csanád County] Government Office continues to regularly monitor compliance with occupational safety regulations and the matters raised in the report by China Labor Watch, and will, if necessary, enforce lawful and safe working conditions through further proceedings,” the spokesperson said.

    For labor rights experts, Hungary’s response to the forced labor allegations is the latest example of countries taking a firmer stance against Chinese businesses operating abroad.

    Security personnel on duty stand near the BYD booth during the Shanghai auto show, April 23, 2025.Ng Han Guan/AP/File photo

    “It’s really exciting to see governments trying to figure out, ‘how do we hold companies accountable for what they do within our borders?’” said Laura Murphy, a professor of human rights and contemporary slavery at Sheffield Hallam University in the United Kingdom.

    According to Murphy, Hungary’s investigation and recent actions by the Brazilian government — which sued BYD and officially added the company to the country’s forced labor list in response to labor issues discovered within the company’s Brazilian plant — mark a potential “sea change” in how nations are treating Chinese investment.

    “With these kinds of migrant workers,” she said, “governments are realizing that they are responsible for those workers, and that, in fact, having exploited laborers from other countries undercuts the labor opportunities for their own workers, and also brings down the labor standards for the workers in their own countries.”

    But it’s unclear what sort of effect these actions will actually have on BYD’s practices. In Brazil, authorities did shut down the company’s factory while it investigated conditions inside, but operations resumed months later. Construction at the Hungary plant is ongoing, and labor rights advocates say while they’ve received some encouraging news, workers are still facing major issues.

    Visitors chat as car models are displayed near a chamber with sub-zero temperatures to showcase the battery charging technologies from Chinese automaker BYD at Auto China 2026, in Beijing, April 25, 2026.Andy Wong/AP

    According to China Labor Watch’s Executive Director Li Chiang, contractors hired by BYD to build the Szeged factory have reduced seven-day work weeks to six days and have allowed workers in the country on improper visas to return home.

    Chiang — who spoke with The World in Mandarin through an interpreter — has remained in touch with several workers at the Hungary plant after the release of his organization’s investigation. He said that while conditions have improved in some ways, workers remain fearful of retaliation.

    “We’ve heard managers have been checking Chinese workers’ WeChat messaging accounts and social media to make sure they haven’t been talking about the conditions at the facility,” Chiang said. “And if they do, then they are subject to punishment and fines. Workers are not allowed to speak with NGOs or journalists.”

    BYD did not respond to The World’s requests for comment on the conditions at its Hungarian facility.

    According to the South China Morning Post, the company has asked all contractors building its Hungarian factory to sign pledges to comply with the country’s labor laws. It’s a move that may look good on paper. But according to Chinese labor expert Laura Murphy, such pledges aren’t worth much.

    Visitors look at the chambers with sub-zero temperatures that showcase the battery charging technologies from Chinese automaker BYD at Auto China 2026, in Beijing, April 25, 2026.Andy Wong/AP

    “These massive systemic problems cannot be addressed through a paper trail,” she said. “And increasingly, companies are producing these paper trails in order to hide from the real work of addressing the underlying causes of forced labor.”

    According to Murphy, labor issues like those at BYD’s international plants are commonplace within China, and real change would have to come at the behest of local officials in Hungary — not Chinese companies themselves.

    In recent weeks, there has been some indication that that could happen. Former Prime Minister Victor Orban, who cozied up to China and promoted BYD’s investment in the country, was ousted by voters in April.
    The newly-elected Tisza party now appears to be taking a firmer stance. Officials at the national level haven’t directly addressed labor issues at the BYD plant. But late last month, the country launched an environmental investigation into the factory that could pose a major problem for the company’s European expansion.

    The post Hungary cracks down on BYD plant over forced labor allegations appeared first on The World from PRX.

    6 min
  • A different kind of ‘Fintech’

    The word “fintech” has come to mean many things — from apps like Venmo and Square that allow us to use a smartphone to pay for things, to crypto, blockchains and online banking.

    But there’s another very important Fintech at play: games. As in, those coming out of Finland’s booming gaming industry.

    From our partners at Deutsche Welle, DW, Lars Bevanger went to northern Finland, where they’ve been teaching gaming for around 20 years.

    Click on the player to hear the full story.

    The post A different kind of ‘Fintech’ appeared first on The World from PRX.

    6 min
  • Families organize amid government funding cuts into rare disease research

    Some 25 million Americans live with rare genetic diseases — that’s nearly 1 in 13. More than half are children. The path to discovering what the condition is and finding treatments can take years. But for children who are medical mysteries, getting a diagnosis can be life-changing.

    Dr. Paola Nicolaides in her office where she sees patients at the American Medical Center in Nicosia, Cyprus.Deepa Fernandes/The World

    Dr. Paola Nicolaides is the Cypriot pediatric neurologist behind the discovery of an ultra-rare genetic syndrome. She was early in her career when she encountered a very unusual patient. An encounter that would change the lives of 333 individuals who, today, have a diagnosis of a syndrome bearing her name, the Nicolaides-Baraitser syndrome, including reporter Deepa Fernandes’ daughter.

    Click on the player above to hear the full stories.

    Within the past year, there have been dramatic cuts to science research grants. Particularly hard-hit has been rare disease research, which has always been difficult to fund, including research on Nicolaides-Baraitser syndrome. But global research collaborations are forging ahead, led by some of the most impacted people.

    Funding for these reports were provided by the Pulitzer Center.

    Here is a photo gallery of some of the people battling through and promoting research for Nicolaides-Baraitser syndrome:

    Paul, Harley and Lisa Smith in Flitwick, England, February 2026. Harley has Nicolaides-Baraitser syndrome.Deepa Fernandes/The World
    Callum Reavey and Maya Rogers, both with Nicolaides Baraitser syndrome (NCBRS), visit a nature park in Marston Vale, England, in February 2026.Courtesy of Michelle Reavey
    Lee, Callum and Michelle Reavey in Flitwick, England, February 2026. Callum has Nicolaides-Baraitser syndrome. Lee and Michelle started the NCBRS Foundation after Callum was diagnosed as the 7th person with NCBRS in 2007.Deepa Fernandes/The World
    Scientist Stephanie Efthymiou from the Institute of Neurology at the University College of London consults with lab technician and Biobank coordinator Aleksej  Kubelka, who is examining a specimen in the Institute’s Biobank.Deepa Fernandes/The World
    Artist Paris Sergiou sits between two of his paintings at his solo exhibition in Nicosia, Cyprus, in February 2026. He is a patient of Dr Nicolaides but does not have NCBRS.Deepa Fernandes/The World
    A painting on display by artist Paris Sergiou during his solo exhibition in Nicosia, Cyprus in February 2026.Deepa Fernandes/The World

    The post Families organize amid government funding cuts into rare disease research appeared first on The World from PRX.

    10 min

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