Join our podcast host and former NYT Science Times editor David Corcoran as he discusses Undark’s latest Case Study on threats to the national parks with writer Madeline Ostrander. Also: Science and media commentator Seth Mnookin on the “statue wars,” and Sara Van Note on a rare genetic disorder afflicting descendants of New Mexico’s Spanish settlers.
A full transcript of the podcast follows.
David Corcoran: This is Undark. We’re a magazine devoted to exploring the intersection of science and society and we’re this podcast. Hello again, welcome to Episode 19. I’m David Corcoran.
For more than a century, Americans have relied on their National Parks as refuges for nature the way it’s meant to be. Vast, majestic tracts of wilderness that are home to such natural wonders as glaciers, grand canyons, wild rivers, and trees that grow as tall as skyscrapers. But as writer Madeline Ostrander tells us in this month’s cover story, the national parks are in trouble, facing threats that not many of us saw coming even a few years ago. Madeline joins us now to talk about her story. Welcome!
Madeline Ostrander: Thank you, David.
David Corcoran: You visited several national parks to write this story for Undark. But you open up in Sequoia National Park in central California and you return there several times in the course of your story. Tell us why Sequoia is special and what’s going on there.
Madeline Ostrander: Sequoia National Park is one of the most iconic national parks in the country. It was visited by John Muir, who wrote a lot of purple prose about sequoia trees and spent a lot of time wandering through that landscape and the Sierra Nevadas. And it was actually established in 1890, so it actually predates the establishment of the National Park Service, which wasn’t set up until 1916. It’s really, in my mind, a park that’s part of our national identity. National park historian Alfred Runte talks about how the national parks were set up as a way to think of “How could the United States in its early years as a nation have its own wonders?” It didn’t have the kind of architectural wonders that Europe had, but it could have these amazing old enormous trees or it could have these beautiful landscapes or these majestic mountains. So there was a way in which the national park system is an enormous part of our national identity, and Sequoia is especially one of those parks that fits into that.
I also wanted to go to Sequoia National Park because they’re experiencing some really significant impacts from climate change. Nathan Stephenson, who is one of the main people that I write about in this story, set up one of the first climate change monitoring programs in the national park system in the 1990s and that’s a long-term forest monitoring project that’s now organized under the U.S. Geological Survey. Since the drought, that area in the southern Sierra Nevadas has witnessed one of the largest mass die-offs of trees in recorded history. Part of what was stressful for those trees was the warmer temperatures and the way the drought is not just dry but hot. That die-off has been showing up in Stephenson’s research in a big way, so I wanted to talk to him about what that meant and how the park was dealing with those impacts.
David Corcoran: We should say that the trees that are dying off are not necessarily the iconic emblems of Sequoia National Park, the sequoias themselves. Are they still in pretty good health or are they threatened as well?
Madeline Ostrander: Actually the sequoias themselves are in relatively good shape. There was an alarming moment a couple of years ago when the sequoias starting showing a bunch of brown leaves that began to die off in their crowns. The people in parks were very worried about it, but the trees actually showed an ability to adapt to the drought and they just dropped those leaves and greened up again as if nothing had ever happened. It’s not sequoias that are in trouble, right now at least.
What is in trouble are primarily pine trees, Ponderosa pine trees and sugar pine trees. Those trees have died off in massive numbers. Half to two-thirds of mature trees in that park have died. That is very alarming — those pines are old and very important part of that forest.
David Corcoran: Specifically, why are those trees dying? Is it the lack of water or other things?
Madeline Ostrander: It’s a cascade of effects. The dry conditions and the warmer conditions stress the trees out and they’re less able to produce sap, and then when they’re less able to produce sap — the sap is actually part of their immune system; when they produce sap it helps them keep insects out, and so when they have less sap the insects are able to invade and so there’s been this huge infestation of different kinds of tree beetles that attack different species. The Western pine beetle, the fir engraver beetle, other kinds of insects and so those have really gone after the pines especially but some other species as well. All of those things together have caused the trees to die off.
David Corcoran: Those beetles are, the infestation of beetles are a direct result of the rising temperatures, right?
Madeline Ostrander: Again, that gets a little complicated as well because the beetles are native to those ecosystems and would have been around for a long time, but the combination of warmer temperatures and the vulnerability of pines, or the trees, makes them able to thrive and makes their populations able to swell.
David Corcoran: It turns out that climate change is really a common theme in the national parks, not just Sequoia. Can you give us some other examples?
Madeline Ostrander: Sure. There are actually 417 units that are overseen by the National Park Service. That includes historic and cultural sites like the Statue of Liberty or Abraham Lincoln’s birthplace in Kentucky. Then it includes of all of those big iconic national parks that are devoted to protecting nature, like Mount Rainier and Yellowstone and Sequoia. You could go to almost any of those and ask about climate change and probably get an earful. The majority of the parks are witnessing some kind of impact from climate change.
Jonathan Jarvis, who was the head of the park service under Obama, said he believed climate change was the greatest threat to the integrity of the national parks they’d ever experienced. There’s some places where there’s really obvious impact from climate change. The most concerning are probably where they’re threatening the very things that the park was set up to protect. Glacier National Park, set up because of its glaciers, is losing its glaciers. Those will probably be gone in about 15 years. Joshua Tree National Park, likewise, is losing its Joshua trees. There are predictions that the park itself may not be able to sustain those trees at all. Or that 90 percent of them will be gone by the end of the century.
There are also a lot of species’ ranges that are shifting. There’s a mammal that’s relative to the pig called the javelina, it’s been wandering up from southern Arizona into Grand Canyon National Park, where it never occurred before. Those kinds of shifts create a lot of questions for people who are managing those parks about how do they manage wildlife. There’s bird and plant species that are moving up in elevation. And then recently, we had two hurricanes, Irma and Harvey, and they gave parks a hammering in the Gulf and then the Caribbean, including Everglades National Park. It’s not clear yet how that hurricane may have affected the mangrove forests.
David Corcoran: All these climate change consequences create a real dilemma for the national park system because it’s always been a gospel that the parks are where we let nature take its course. So climate is changing and trees are dying, and that’s just nature happening, but the question you pose is “How do you preserve the wilderness when nature itself is no longer behaving like it’s supposed to?” Can you talk about that?
Madeline Ostrander: I came to this story partly because I read an essay written by Nathan Stephenson, again, the scientist who is the subject of part of this story. He wrote an essay for the Park Service centennial where he talked about the different eras that have defined how the National Park Service handled nature. The first one he called the era of spectacles, and that was when the Park Service was more focused on tourism, when they did things like feed the bears so that the public could watch the bears being fed at night.
And then in the ’60s the son of the famous conservationist Aldo Leopold, a man named A. Starker Leopold, wrote an important document that defined Park Service policy about how to protect nature. He said that parks — the language sounds a little bit outdated now, but it’s still a guided park policy for a long time — he said the parks should look like a vignette of primitive America. Ecosystems should look like they did before Europeans came along and started messing with them. When Stephenson first started and when a lot of scientists started working in the Park Service, they had this dream or this ideal of making nature look like this pristine thing that it had been. Or at least trying to keep nature as it had been for many centuries.
In about the 1990s, Stephenson started reading about the predictions of climate change, and he had this experience of incredible despair and depression about the fact that that goal wouldn’t really be attainable. In this essay he argues that the Park Service is moving into a third era of management, where they have to think about nature in a completely different way. They have to think about nature as something that’s going to change. They have to be flexible about it, and you can’t necessarily keep out human influence because human influence is everywhere.
Gregor Schuurman, an ecologist with the climate change response program, compared it to a scientific revolution. He said it was a paradigm shift in the entire way that the Park Service is thinking of nature, and so it really is a major shakeup in the way that the National Park Service handles itself. That was a major reason why I thought that it would make a good story, because it wasn’t just a collection of impacts that were happening in the park. It was actually a big shift in the way that the park saw itself.
David Corcoran: It turns out that people who make up the Park Service really anticipated the possible effects of climate change long before most of us were thinking about this problem. Can you tell us about this exercise they’ve been doing called scenario planning?
Madeline Ostrander: Scenario planning is an interesting process to be taken up by a national park system. Scenario planning was a process that was actually first invented by Herman Kahn. He was a futurist. In the 1960s he actually inspired the mad scientist character in the famous comedy “Dr. Strangelove.” But he was a military strategist, basically. He came up with this military planning process that’s sort of a gaming process. The process was to help the U.S. government think about how do you imagine — “How do you think the unthinkable?” is how he put it. How do you imagine what it would look like if we actually, God forbid, had a nuclear war? In the time since then a lot of businesses started taking it up. Royal Dutch Shell used scenario planning to help it prepare for the oil crises in 1970s. A number of other businesses have used scenario planning to try to think about different outcomes that they wouldn’t otherwise be able to imagine.
About five to seven years ago, the National Park Service started looking into using scenario planning for thinking about climate change. For them the unthinkable is to imagine that the resources they’ve devoted themselves to protecting might not be there anymore. There are parks in Alaska that went through a scenario planning exercise pretty early on, and then there are parks around the country that went through this process. And Sequoia National Park did a scenario planning exercise, and it was like a game. They sat down and they came up with a set of different stories about what could the park look like both if climate change went one way or another, but also if our political and social situation went one way or another. Maybe politics change radically, as they just have. Or maybe public sentiment about the National Park Service changed radically. What would you do in those scenarios?
They plotted out “What would it look like if there was a fire? What would it look like if there was a drought?” And this is all actually before the most recent drought. When the drought happened, there was actually a big fire and there were some of the impacts that they predicted happening in the scenarios. There were insect infestations as they imagined happening. That thinking is already starting to pay off, but it’s a difficult process for the Park Services to go through, to try to think about how do they navigate a future that looks really different from the one they’ve always assumed would be there.
David Corcoran: You described some of the people on the front lines here in your article as “22,000 olive-and-gray-clad rangers, scientists and other staff who’ve recently acquired a near mythical reputation as a cadre of outlaws fighting to avenge assaults on climate science.” Can you talk about some of these people? Are they really outlaws?
Madeline Ostrander: I don’t know that I actually see the scientists in real life as outlaws. But I was referring here, partly, to a certain kind of mythology that sprang up around the National Park Service. Some of that started early in the year, when there was a National Park Service account that retweeted an image comparing the disparity in size of the crowds at Obama’s inauguration and at Trump’s inauguration and then long after that, someone at Badlands National Park using their Twitter feed posted this long stream of tweets with facts about climate change, and those were eventually taken down.
Then there was a proliferation of a series of spoof Twitter accounts for parks and other government agencies with funny names like Bad Hombre as opposed to Badlands or Alt National Park Service. And it became a meme, and even now if you were to Google the National Park Service and say the word resist you could find images all over the internet of cartoon park rangers with the hashtag resist. And you can even buy T-shirts and onesies with the National Park Service logo on them and then the word resist stuck across the top of this. There’s this symbolism and mythology of the Park Service that’s become very popular this year that suggests that the Park Service is a bunch of rebels.
The scientists that I spoke with on the ground didn’t strike me as outlaws, they struck as me as people who tended to follow the rules. But the trouble is there’s the rules of politics, there’s the rule of science, and there’s longstanding policies about protecting the parks, and those don’t always agree. The rules of science, good science, is that you want to be honest and truthful about what your data suggest, including when they suggest that the climate is changing and then that might have a serious impact on the National Park Service. We have an administration that seems uncomfortable with and unwilling to acknowledge some of the science of climate change, and so that puts people in the Park Service at odds with the rules of politics. They’re part of the executive branch but they’re at odds with the leader of the executive branch. It puts them in a very awkward position. It’s not so much that they’re outlaws by choice but that perhaps the situation is making it necessary for them to say things, do things that might be uncomfortable.
David Corcoran: Not only is the administration minimizing the effects of climate change; they seem pretty determined to cut budgets for conservation and the national park system itself. What do you think the outlook is here? Are the national parks going to survive?
Madeline Ostrander: The scientists I spoke with didn’t sound that pessimistic about the work they were doing itself. For instance, Nathan Stephenson told me multiple times that he was optimistic about Sequoia National Park’s ability to adapt to climate change. The scientists themselves have a strong sense of mission and a tendency to want to keep their heads down and keep going and keep doing the work. Gregor Schuurman, the ecologist with the National Park Service climate change response program, told me that it’s their responsibility under the law to protect the people’s resources. But I did a sense that a lot of those people were nervous and perhaps even quite alarmed and even a bit hesitant to say so on the record.
As you say, both Trump and now the House in their appropriations bill have proposed some substantial cuts to the Park Service. That’s at a time when the number of visitors to national parks is climbing to record highs and it’s pretty difficult for the agency just to manage basic things like how do you deal with that many visitors? And how do you do basic things to protect the parks and maintain the roads? And figuring out how to deal with climate change has added pretty serious problems on top of that that also require resources. It is a worry. The fortunate thing is that the Park Service enjoys a lot of support from the public, including on the right and on the left. A poll around the centennial last year said that about 74 percent of Americans have a favorable view of the National Park Service, which is a lot more than the approval rating for the president right now. The Park Service has a definite constituency, and there are members of the public who are willing to fight for the national parks. From that standpoint, there is some reason for optimism.
David Corcoran: Madeline Ostrander is a freelance science journalist based in Seattle. Her work has appeared in The New Yorker, Audubon and The Nation, among other publications, and her article about the national parks, “A Time of Reckoning,” is our case study on Undark for September. Madeline, thanks so much joining us to talk about it.
Madeline Ostrander: Thank you for having me.
David Corcoran: Joining us, as always, is Seth Mnookin to talk about science and the media. Hello Seth.
Seth Mnookin: Hello, David, how are you?
David Corcoran: I’m good, thank you. We have a couple of issues to talk about this time. Let’s start with what some people are calling the Statue Wars: what to do about all those Civil War monuments and other memorials to America’s legacy of slavery. The wars recently erupted in, of all places, an editorial in the journal Nature. What happened?
Seth Mnookin: On September 4th, Nature’s news segment ran an editorial under the headline “Removing Statues of Historical Figures Risks Whitewashing History.” There were a couple of things that were notable about this piece. The focus of it was a 19th century gynecologist, J. Marion Sims, and a statue to Sims that is in Central Park. That statue had been defaced recently. Someone had painted “racist” across it in red paint and also painted the eyes red, so Sims sort of looked like a demon. One of the many issues with Sims is that he performed dozens of experiments on African-American, enslaved African-American women, without anesthesia. and in fact, some of the breakthroughs in gynecology that he achieved were the result of this enforced experimentation, enforced for the women and very cruel experimentation.
What the initial editorial seemed to say was that removing statues of people like Sims ran the risk of erasing history and that what should happen instead is that statues should stay up, and along with them there should be other monuments or plaques or statues giving fuller historical context. This immediately caused a huge, very understandable outcry. It was a very poorly reasoned editorial and it also seemed, in many ways, to be a wholly unnecessary one. And after being attacked, Nature then went through a series of paroxysms, changed the headline, changed the opening paragraph, changed the closing paragraph, started running some critiques of their position in the journal and running comments and eventually Philip Campbell, the editor, wrote a letter saying that it was a result of a process that on this occasion had failed.
David Corcoran: Some of scientists who responded to this Nature editorial — and the response was certainly overwhelmingly negative — some of them actually threatened to withhold their contributions to Nature, essentially to boycott the publication. Is that maybe a bit of an overreaction? Is it throwing out the baby with the bathwater, do you think?
Seth Mnookin: I don’t know. The way — and this is something that people who are not very intimately involved with the granular details of science might not be aware of — but essentially scientific journals, which are huge profit-making engines for their publishers, exist because of the charitable contributions of the academics who not only submit papers for them, but also review other people’s work for free. That anyone who has reviewed a manuscript knows that takes an enormous amount of time, and one scientist in particular, Sonya Legg, at Princeton, said that she’s not going to submit manuscripts for publication or review any manuscripts from any of the Nature journals.
In terms of throwing the baby out with the bathwater, it’s not as if a study is not published in Nature, there are no other places for it to get published. Nature is, if not the, one of the top two or three scientific journals in the world, but it has that position as one of the top two or three scientific publications in the world because of the fact that top scientists around the world choose to submit to Nature first. It’s a justifiable and understandable thing for a scientist to say, “I do not want my work to be associated with a journal that is making these types of editorial decisions, and until I have a better understanding or a fuller explanation of how this happened, I’m going to choose to associate what I spend my life doing and my life’s research with other journals.”
David Corcoran: Just one more question about this before we move on. Clearly Nature regrets having published this editorial. I’m sure their regret is sincere. I’m sure they wish they had never gotten into this at all. Is the lesson here is that scientific publications should give a wide berth, steer away from these kind of big political, cultural issues?
Seth Mnookin: Certainly some people would say that. I would not. I actually think the opposite, that it is it’s both naive and occasionally dangerous for scientists in general, and the practice of science, to act as if it is taking place in vacuum; that is clearly not true. Science takes place in society and a certain social and historical context, and it is certainly appropriate for scientific journals to comment on the society that they exist in and to take stands when there are things that they feel like are ethically or morally wrong or should be commended. What is so shocking about this is that this was a situation in which it seems that someone on Nature’s staff wanted to take a stand and essentially thought that the people who were criticizing them were going to agree with them. It seems as if there was a perception that they were saying, “We should also put up monuments to the people who the victims of scientists like Sims or also acknowledge the wrongs that were done.” There was a perception almost that they expected the reaction would be “That’s — bravo, that’s a great thing to say.”
What this does even more than highlight this particular issue is highlight the real shocking lack of diversity that there remains in so many levels of science. Not just in labs, although it’s certainly true in labs, but across the board in terms of who’s part of the conversation, how decisions are being made, what opinions are being sought. It is not representative of society as a whole, and that is problematic. Not because of some ideal that every aspect of society should be representative of society as a whole, but because when we are not getting everyone’s viewpoints, we are closing ourselves off to avenues of inquiry and areas for potential investigation that should be explored.
David Corcoran: On another note entirely, we had another article in Undark recently by a freelance space reporter named, Sarah Scoles, who wrote about her experiences with the public information office at the U.S. space agency, NASA. Tell us about that article.
Seth Mnookin: This is an article that anyone who has ever done any reporting on any level of government nodded their head or chuckled at reading, although it’s not a funny matter. Essentially NASA seems to be in the habit of making things difficult for reporters for absolutely no reason at all other than that’s standard operating procedure. They don’t respond to FOIA requests where other agencies across the government do. One of the things Sarah did was send out identical FOIA, identically worded FOIA requests to a selection of different government agencies, and everyone responded, including the Air Force, the Army, and the Government Services Administration, except for NASA. They don’t get back to reporters who are asking questions on deadline. Another thing that Sarah documented was they have public information officer handlers sitting in on a lot of interviews, in general fostering this atmosphere of distrust and difficulty.
The reason why I said I think anyone who’s had any experience with government chuckles at this is because reporters see this all the time — where those involved in government shoot themselves in the foot by not taking advantage of the fact that the press is looking for stories and they will either write stories that you can participate in or if they are forced to, they will work around you. What NASA is essentially doing is cutting itself out the story process.
David Corcoran: Did you get any sense from reading this article, why is NASA so buttoned up when other agencies like the Defense Department and the Interior Department are much easier to get through to?
Seth Mnookin: Certainly there was nothing in Sarah’s piece that gave any explanation. I haven’t done reporting on space but none of the space reporters that I’ve talked to have any sort of explanation for this. It seems to just be a general paranoia, and I’m not sure how that got installed in the culture. Sarah opens her piece with a farcical anecdote about her trying to get a comment about what would happen if an astronaut dies in space. Which, literally, is one of those stories you could see written up on a diorama in a science museum, and NASA just stonewalled her and stonewalled and refused to answer. And so she reached out to Chris Hadfield, a Canadian scientist, and he got on the phone and told her right away. There was nothing to hide there. There’s no bad story there, but NASA iced itself out of being a part of that story. And not only iced itself out of being a part of that story but also helped engender a story essentially saying how painful and difficult they are to deal with.
David Corcoran: Actually Sarah did address the question a bit in her article: She said that NASA is always under scrutiny for its budget. It’s always fighting to stay afloat and in the past 10 months of the Trump administration they’ve particularly under siege.
Seth Mnookin: A couple things. It’s worthwhile pointing out that she is not just reporting this as happening in the past 10 months but dating back, certainly to the Obama administration. At the same time, I thought Sarah was, if anything, being a little too generous to NASA in that regard, because for a federal agency fighting for budget and fighting for every last dollar, nothing changes politicians’ minds like public sentiment. If NASA is trying ensure that it continues to be funded, one very obvious way to do that would be to make sure the public is engaged in its mission and to make sure that around the country citizens and therefore voters understand why NASA is so valuable. Why it’s so important. Why we should continue to essentially explore the unknown. If that is actually the reason that they are not letting themselves be accessed by journalists, therefore not getting their stories out to the public, that’s just a horrible lesson in message management, and again just underscores how much they’re hurting themselves in doing this.
David Corcoran: Seth Mnookin is our science and media commentator. He’s the author of a number of books about science and journalism, including “The Panic Virus,” and he’s director of the Graduate Program in Science Writing at MIT. By the way, you can find both of the articles we talked about on the Undark website, undark.org. Scroll down to the Variables section. Seth, as always, thanks.
Seth Mnookin: Yes, thank you very much.
David Corcoran: Many New Mexicans proudly trace their family line back 400 years, to the Spanish settlers, yet that lineage puts them at a disproportionate risk for a rare disease that can cause stroke, seizure, and death. It’s called cerebral cavernous malformations, and while in the general population it affects just one in 500 people, in some New Mexico communities, as many as one in 50 have it. Yet many remain undiagnosed. Sara Van Note reports on new efforts to reach them.
Sara Van Note: Saturday morning, and 2-year-old Riley and 5-year-old Colton are in the family room of their Albuquerque home playing with brightly colored Play-Doh. Their mom, Lori Dunworth, says they don’t always play together this well. They both receive speech therapy because of something that happened to Colton several years ago. One day Dunworth and her husband, Toby Arnett, noticed Colton, who was 2 years old, doing something strange.
Lori Dunworth: He would start clicking his mouth and then his face would start to twitch but it was just one side; and we had no idea what was causing that, and his doctor thought, well, he had just gotten over the flu. And one of them lasted over 20 minutes so she said, “Get him to the hospital.”
Sara Van Note: They found out Colton had a seizure and were terrified when an MRI revealed masses in his brain. The doctors first said they were tumors. Then the Arnetts found out they were lesions caused by abnormal blood vessels.
Toby Arnett: The original impact was devastating. Knowing that something’s wrong with your child is never a good thing.
Sara Van Note: Arnett explains there’s no cure, but Colton’s seizures are now managed by medication. After Colton was diagnosed, they found out Riley also had lesions in her brain. So far, she’s had no symptoms. The lesions are caused by a rare genetic mutation, and both children and their mom tested positive for it. It’s called the common Hispanic mutation and it’s estimated to be carried by tens of thousands of New Mexicans. Dunworth had no idea she had it.
Lori Dunworth: I’ve never had any symptoms. No seizures, no paralysis, no nothing. To find out that this runs in my family after my son started suffering from seizures, it was difficult to take in.
Sara Van Note: Like Dunworth, about half the people with the mutation are asymptomatic, but everyone who has it is a carrier, with a 50 percent chance of passing on the disease to their children. Despite these odds, thousands are undiagnosed. Now there’s a new approach to reaching them.
Joyce Gonzales: Let me start off by asking, how many of you are from the Baca family, that you know of? Just one?
Joyce Gonzales: O.K. I’ll tell a little bit about what I know about [inaudible] a little bit.
Sara Van Note: That’s Joyce Gonzales, an amateur genealogist with the Angioma Alliance, a national advocacy group for people with cerebral cavernous malformations, or CCM. Gonzales has the disease and has dedicated herself to collecting family trees from across New Mexico to trace the mutation back to the first carriers. Today she’s presenting at a Santa Fe seniors’ center where a couple dozen people fill seats in a corner of the dining room. She shares the history of the Baca family, among the first Spanish settlers to arrive in New Mexico in late 1500s.
Joyce Gonzales: Today we’re really here to, as well as the Baca family, to talk about illness that has been very little understood until the last few years.
Sara Van Note: Gonzales says people with the mutation share a common ancestor. Likely Cristóbal Baca and his wife Ana Maria Laura. While most descendants still live in New Mexico, the mutation is also found in Hispanic communities across the American Southwest and northern Mexico. Then Gonzales [makes] her pitch to the elders gathered: Even if you’ve never had symptoms, if you’re a Baca descendant, you should think about getting the genetic test.
Joyce Gonzales: But they are still carriers of the illness. That means each of their children will have 50 percent chance of inheriting it. And their child may be a bleeder and again, again I say why would we even want to know about this? For that reason exactly. It’s for our children, for our grandchildren, for great-grandchildren, and so on and so forth.
Sara Van Note: Gonzales invites them to submit their family tree, and if they are a direct descendant of the Baca couple they can get tested for free. After the presentation, people come up to study a family tree on a huge poster.
Speaker: That’s where I come from.
Sara Van Note: Gonzales says they’ve done these presentations around the state and the response has been mostly positive, but they have faced some criticism.
Joyce Gonzales: We actually had a representative from down south get very upset about, why are we pinning on the Baca’s? How do we even know what we’re talking about?
Sara Van Note: But Gonzales says the outreach emphasizes the full range of the Baca family heritage including important contributions to New Mexico culture.
Joyce Gonzales: I try real hard to say, talk about the positive things about the Baca family because we are not trying to demonize a name.
Sara Van Note: It took 15 years for her to get diagnosed with CCM, Gonzales says, and she does this outreach to help other families. For the medical community, identifying more people with the common Hispanic mutation is key to advancing understanding of the disease, but there are ethical concerns, like the right of individuals to know or not to know what their genetic risk is.
Leslie Morrison: And certainly that’s a decision each of the people needs to make, because some people are only burdened by knowing.
Sara Van Note: That’s Leslie Morrison, doctor and professor of neurology and pediatrics at the University of New Mexico, who’s studied CCM for two decades. She says, “The medical community must respect individual choices as well as encourage participation in medical studies of CCM.” If they can find people with a wide range of symptoms, Morrison says, “they have a better chance of discovering therapies.”
Leslie Morrison: And we are trying to figure out what are the factors that would potentially convert someone from a severe form of disease to someone who has very few problems with the disease.
Sara Van Note: Morrison explains that New Mexico has the largest group of people with a genetic form of the disease anywhere in the world, so they’re of great interest to scientists both nationally and internationally. The first drug trial for CCM was recently conducted with patients from New Mexico. For mom Lori Dunworth, she’s joined CCM studies in the hope she can help her son, Colton, and other children.
Lori Dunworth: If there’s something that I have that’s causing the lesions not to grow, I want to get that out there and make sure that there is a cure or if something that needs to be changed to get the word out to help people.
Sara Van Note: With help from medication, her son, Colton, has been seizure-free for almost three years. But for some people, medication isn’t enough. Their only remaining option is risky brain surgery.
Speaker: How can we make it look like a pumpkin?
Sara Van Note: But with greater awareness and more studies people with CCM may have options beyond brain surgery like new treatments. Dunworth says she doesn’t want other families to suffer like they did, and she encourages them to become informed about CCM.
Lori Dunworth: I would say, Don’t be afraid to get tested because knowledge is everything. If we had known before, it would have been great. Like I said, when it comes to the future generations it really helps, it really helps knowing.
Speaker: Here’s a tiny hat.
Sara Van Note: For Undark, I’m Sara Van Note in New Mexico.
David Corcoran: And that’s all for this episode of Undark, a project of the Knight Science Journalism program at MIT. Our show is produced by Katie Hiler. Special thanks this month to Hans Anderson. We’ll be back next month with more news and interviews from the intersection of science and society. Until then, I’m David Corcoran, for Undark.