Navajo Nation's Monument Valley Park, Arizona.
Elmer Guy and Nonabah Lane.
Credits: Navajo Technical University, left, and Diana Levine
Nonabah Lane: The COVID pandemic is really highlighting a lot of ways in which we are lacking, and that's especially true here in our tribal community, because the first thing you need to even address where we are in this science and technology space is the internet. There's a considerable gap between the haves and the have-nots in terms of internet. The Navajo Nation is roughly the size of West Virginia, but we don't have anywhere near the broadband and internet access that other "states" this size would have. Some of the more glaring reasons for this go back to historical policies, lack of funding for infrastructure on tribal lands, and current rights-of-way issues, and a lot of it has to do with the fact that larger corporations aren't as willing to take risks in doing business on a tribal trust land. When you don't have the internet, you don't have access to information, you don't have access to what is going on in the world or science or technology, and you can't keep up with work or school.
Dr. Elmer Guy: That's right. In this pandemic, as we're being forced to go online, I see school buses parked outside for students who don't have internet at home. The buses are equipped with Wi-Fi, so if students can find a way to get to where those buses are parked, they can get on and do their homework. But only then.
Internet has long been an issue, and the Navajo Nation's telecommunications department created a cyber task force that we at Navajo Technical University (NTU) are members of. One of the things we recently did was to petition the FCC for special temporary authority of an EBS [Educational Broadband Services] 2.5-GHz spectrum that was available but not being used. So now we have that and we're using it to set up hot spots for students to connect. We're also working with the four internet-service companies: Cellular One, Navajo Tribal Utility Authority, Sacred Wind, and Frontier. As Nonabah was saying, the Navajo Nation is quite large and has five agencies. NTU is in the eastern agency, but Navajo Tribal Utility Authority doesn't have a footprint here, so we partnered with Sacred Wind as well as Frontier to broaden our bandwidth.
We've also been collaborating with the Navajo Cyber Team on developing a Navajo Nation broadband policy, and we're almost done with that. The Navajo Nation received some CARES [Coronavirus Aid, Relief, and Economic Security] funding, and part of that is being used to address broadband. One of the things we're trying to do is see if tribal colleges can qualify for E-Rates [educational rates], since schools are eligible for E-Rates. And so some of the schools are getting connected.
What's also happening is that the Navajo Nation is trying to expand water lines to families so that they have water to wash their hands during this pandemic. We're recommending that if they're going to dig for the water lines, they might as well lay down conduits, too, so that later we will be able to install fiber as well. We happen to specialize in wireless technology here at NTU, and that is making a significant impact. In the past, it used to be about point-to-point, and when you're trying to serve a community in the valley, you'd have to find a water tank or something high and then get down and into that community from there. But with newer technology, they can bend now into those valleys. We keep reminding the state that they need to address rural communities. We've reached out to congressional members to push them to address broadband issues with Indian communities, and there are a couple of bills out now addressing that.
Of course, there are other things we're looking at in terms of scientific priorities: artificial intelligence, robotics, and climate change. We're in a high-desert environment, and the sand dunes are increasing because of overgrazing and other factors. Water sources are limited, and air pollution doesn't really help, so robotics could be promising. For example, we're looking at the water-filtering systems for wells so that both animals and humans have access to safe water. We're beginning to see the reach of technology in places like grocery stores, where people can check themselves out without the need for cashiers. So we try to look ahead and project what kinds of jobs will and will not be needed on the Navajo Nation, then have our faculty think about ways of adjusting the curriculum to stay in line with where the world is headed.
"One of the biggest challenges for us is how we make sure there's a connection between the students who want to go into science and how they can continue to contribute to Navajo communities—to their parents' and grandparents' way of life."
NL: Since we're talking about the internet and A.I., I think one of the key issues that isn't addressed in tribal communities is data: data security, privacy, and, ultimately, ownership. It's such a gray area. Take this pandemic, for instance, and the numbers and the data that's being collected: who's taking all of this information out of our communities and who's accounting for it? It's an important component being extracted seemingly covertly. Our tribal communities don't necessarily understand how valuable it is to keep that data within our communities.
I know there are various data holders who are not Navajo who have studied Navajo people and our environment, from soil samples to diabetes rates, and it's just not information we fully have access to as a population—our own information. It's critical to get everyone on the same page and to understand the importance of that.
There's a water project I'm working on that came out of the Gold King Mine waste-water spill of 2015, which was a major environmental catastrophe in New Mexico that affected the run-off from the San Juan Mountains. The water contamination really hurt agriculture, especially Navajo farmers on the San Juan River. We still feel it, even if the pandemic has kind of overshadowed it, and before the pandemic, my organization, Navajo Ethno-Agriculture, adopted a lot of the hard-science data that was taken by the University of Arizona. We've been working with New Mexico State University in continuing to collect and share data with the community in order to build back confidence with Navajo consumers about our farm produce. We have an ongoing partnership with New Mexico State University where they come out and do soil testing, and Navajo Preparatory School students are developing a curriculum around this as well. The point is to get easy-to-use, low-cost technology so that farmers can do this testing on their own and not have to wait for and rely on a university or the government agencies to come out and test it. This initiative would not have been possible without the support of the MIT Solve Indigenous Communities Fellowship.
Of course, you're always going to have the people in the community who don't believe in science and don't believe that the water is, in fact, okay, but it's essential that we have that scientific data. It's about empowering farmers to be able to relay that message as well—and finding a bridge between our longstanding traditions and modern science. A lot of the farming among the Navajo is deeply traditional to this region, and, as a culture, we're focused on the traditional aspects of the food. That's really why we felt like it was important to be proactive about this—because if you lose one more generation of farmers who don't produce these heritage foods, it's not just your food, it's your whole culture and way of life—your heritage—that could be gone. So it's important to preserve that tradition, but also alongside Western science—and data is critical.
EG: Nonabah is right about tradition, and I think one of the biggest challenges for us is how we make sure there's a connection between the students who want to go into science and how they can continue to contribute to Navajo communities—to their parents' and grandparents' way of life. A lot of the time, you have to create those opportunities. For example, we're trying to develop an environmental laboratory at one of our sites in Chinle, Arizona, where we want to be able to test the water, soil, air, uranium, etc. We have people who can run that facility mainly to help with the uranium mine clean-up. There are over 500 abandoned uranium mines, and what might usually happen is that funds would become available and outside entities would get those grants and they'd come in and do the work. Then, as soon as the grant is up, they leave and everything disappears, but the problem remains. It's these kinds of situations where we say, Why can't we do that ourselves? And the only way is to train and prepare engineers ourselves, from our community.
A lot of our students intern with the U.S. Army and Air Force Research Labs Faculty Fellowship or with Boeing or NASA, and, when they graduate, those groups grab them for themselves. So I keep asking the Navajo Nation where they are in all of this. A lot of times we are the ones who create the barriers that only end up hurting us. When the Navajo Nation puts out job vacancies, they require candidates to have so many years of experience, and our students don't qualify. There is a tremendous need for our graduates, but everybody except the Navajo Nation ends up hiring them.
NL: As Dr. Guy says, creating opportunity is so important. My family's non-profit organization, Navajo Ethno-Agriculture, actually came about for that particular reason. We had people coming in and doing workshops and telling us how we should plant and do this or that. It was absurd—how can you come from Washington State and tell us how to plant when you don't know what native crops have been planted in our home region for centuries? And so, because of my family's background in the sciences and the traditional upbringing we all share, we built this program ourselves. We incorporate the science into our program, and we encourage students to pursue a career in science, while trying to create those job opportunities for them here. I find that more than 75% of the Navajo students I interact with—whether in high school or college—want to come back home. They just don't have the work or career opportunities to do so.
EG: NTU also has a partnership with the Navajo Nation's economic department, and we run their business incubator program. We encourage people to go into businesses here on Navajo. One of the challenges is that, even though the Navajo Nation may be the size of West Virginia, we don't own the land. So you have to deal with leases or homesite land-use permits, and it's daunting. We streamline that process and help people put together business plans, set up payroll taxes, figure out marketing strategies, and so forth.
One of the challenges is resistance, and that's something you have to deal with. For example, when I was pushing my faculty to develop an engineering degree, no one could understand why. So I told them about the national goal—that the United States has set a goal for itself that by the year 2026 or whenever, it wants to have 100,000 engineers. But what about the Navajo Nation's goals? We don't have a goal, but we should, and you have to push people to get there. Eventually everyone sees the benefits of these kinds of decisions.
NL: I also believe we have to encourage the entrepreneurial mindset: If something doesn't exist here already, then ask yourself what's needed and create it. This is our community, and we can make that change. I'm really biased toward starting your own thing because that's what I do. Before COVID-19 hit, I was developing a water lab that would stand closer to the Southern Ute Reservation so that it could be at the opening to the tributaries that run into the Colorado River and downstream to the tribes. I wanted that specific site because it would allow us to monitor the water that's a priority for tribes—because everyone else already has their own resources. And all of the water scientists involved were Navajo. If people like us don't take the initiative for these kinds of projects, the absolute wrong person is going to do it, without understanding the community.
EG: Whether it's the environment or water or some other scientific need, it's important that we remember to develop the smaller steps necessary for achieving any goal. For example, if we need veterinarians, then we have to ask what the steps are to get us to that point. A veterinary or medical school probably won't happen at NTU, but we could begin by identifying and building the steps needed to get there. We did this by starting a veterinary technician program and then added an animal science degree and then a biology degree, which is designed somewhat as a pre-medical degree, so that students can go into either medicine or veterinary science. We know we can't always make a leap right away, but we can build the pathways that get us there.
NL: For everything we've been discussing, I think it's really important to understand that we're not talking for the whole of the Navajo Nation; the Navajo Nation is large, and its culture is regional. There are different priorities in different communities. Where I live, we have abundant water around us, so that is not a need, but if you go 100 miles south, there's no water infrastructure whatsoever. And there are other issues, from coal and oil and gas extraction, to the uranium issue, which are regional. Some people live close to large health facilities while rural communities only have access to a clinic. NTU is resource-abundant in terms of having that academic outlet for students while people on the other side of the reservation may not have that. I'm always very clear about this. I may be speaking from a tribal nation, I may be speaking from experience, but I'm not speaking for the Navajo Nation as a whole, and I'm not speaking for tribal communities as a whole. Yes, we are a community, and we can expose a greater picture in our area of expertise, but there are definitely different areas that have individual needs.
Still, I do believe in the promise of what the future can hold for us in terms of both science and tradition. The two can complement each other and are not at odds, even though we tend to think of sustainability in scientific terms. And yes, science can help us achieve sustainability through things like solar tech, health innovations, and natural sciences. But I'm talking about sustainability overall and of the Earth: sustainability of water, energy, and agriculture, but also of human capacity and Navajo culture.
[Editor's Note: To read other articles in this special magazine issue, visit the beautifully designed e-reader version.]
Amber Freed and Maxwell near their home in Denver, Colorado.
Getting the diagnosis took months of painful, invasive procedures, as well as fighting with the health insurance to get the genetic testing approved. Finally, in June 2018, doctors at the Children's Hospital Colorado gave the Freeds their son's diagnosis—a genetic mutation so rare it didn't even have a name, just a bunch of letters jammed together into a word SLC6A1—same as the name of the mutated gene. The mutation, with only 40 cases known worldwide at the time, caused developmental disabilities, movement and speech disorders, and a debilitating form of epilepsy.
The doctors didn't know much about the disorder, but they said that Maxwell would also regress in his development when he turned three or four. They couldn't tell how long he would live. "Hopefully you would become an expert and educate us about it," they said, as they gave Freed a five-page paper on the SLC6A1 and told her to start calling scientists if she wanted to help her son in any way. When she Googled the name, nothing came up. She felt horrified. "Our disease was too rare to care."
Freed's husband, a 6'2'' college football player broke down in sobs and she realized that if anything could be done to help Maxwell, she'd have be the one to do it. "I understood that I had to fight like a mother," she says. "And a determined mother can do a lot of things."
The Freed family.
Courtesy Amber Freed
She quit her job as an equity analyst the day of the diagnosis and became a full-time SLC6A1 citizen scientist looking for researchers studying mutations of this gene. In the wee hours of the morning, she called scientists in Europe. As the day progressed, she called researchers on the East Coast, followed by the West in the afternoon. In the evening, she switched to Asia and Australia. She asked them the same question. "Can you help explain my gene and how do we fix it?"
Scientists need money to do research, so Freed launched Milestones for Maxwell fundraising campaign, and a SLC6A1 Connect patient advocacy nonprofit, dedicated to improving the lives of children and families battling this rare condition. And then it became clear that the mutation wasn't as rare as it seemed. As other parents began to discover her nonprofit, the number of known cases rose from 40 to 100, and later to 400, Freed says. "The disease is only rare until it messes with the wrong mother."
It took one mother to find another to start looking into what's happening inside Maxwell's brain. Freed came across Jeanne Paz, a Gladstone Institutes researcher who studies epilepsy with particular interest in absence or silent seizures—those that don't manifest by convulsions, but rather make patients absently stare into space—and that's one type of seizures Maxwell has. "It's like a brief period of silence in the brain during which the person doesn't pay attention to what's happening, and as soon as they come out of the seizure they are back to life," Paz explains. "It's like a pause button on consciousness." She was working to understand the underlying biology.
To understand how seizures begin, spread and stop, Paz uses optogenetics in mice. From words "genetic" and "optikós," which means visible in Greek, the optogenetics technique involves two steps. First, scientists introduce a light-sensitive gene into a specific brain cell type—for example into excitatory neurons that release glutamate, a neurotransmitter, which activates other cells in the brain. Then they implant a very thin optical fiber into the brain area where they forged these light-sensitive neurons. As they shine the light through the optical fiber, researchers can make excitatory neurons to release glutamate—or instead tell them to stop being active and "shut up". The ability to control what these neurons of interest do, quite literally sheds light onto where seizures start, how they propagate and what cells are involved in stopping them.
"Let's say a seizure started and we shine the light that reduces the activity of specific neurons," Paz explains. "If that stops the seizure, we know that activating those cells was necessary to maintain the seizure." Likewise, shutting down their activity will make the seizure stop.
Freed reached out to Paz in 2019 and the two women had an instant connection. They were both passionate about brain and seizures research, even if for different reasons. Freed asked Paz if she would study her son's seizures and Paz agreed.
To do that, Paz needed mice that carried the SLC6A1 mutation, so Freed found a company in China that created them to specs. The company replaced a mouse SLC6A1 gene with a human mutated one and shipped them over to Paz's lab. "We call them Maxwell mice," Paz says, "and we are now implanting electrodes into them to see which brain regions generate seizures." That would help them understand what goes wrong and what brain cells are malfunctioning in the SLC6A1 mice—and help scientists better understand what might cause seizures in children.
Bred to carry SLC6A1 mutation, these "Maxwell mice" will help better understand this debilitating genetic disease. (These mice are from Vanderbilt University, where researchers are also studying SLC6A1.)
Courtesy Amber Freed
This information—along with other research Amber is funding in other institutions—will inform the development of a novel genetic treatment, in which scientists would deploy a harmless virus to deliver a healthy, working copy of the SLC6A1 gene into the mice brains. They would likely deliver the therapeutic via a spinal tap infusion, and if it works and doesn't produce side effects in mice, the human trials will follow.
In the meantime, Freed is raising money to fund other research of various stop-gap measures. On April 22, 2021, she updated her Milestone for Maxwell page with a post that her nonprofit is funding yet another effort. It is a trial at Weill Cornell Medicine in New York City, in which doctors will use an already FDA-approved drug, which was recently repurposed for the SLC6A1 condition to treat epilepsy in these children. "It will buy us time," Freed says—while the gene therapy effort progresses.
Freed is determined to beat SLC6A1 before it beats down her family. She hopes to put an end to this disease—and similar genetic diseases—once and for all. Her goal is not only to have scientists create a remedy, but also to add the mutation to a newborn screening panel. That way, children born with this condition in the future would receive gene therapy before they even leave the hospital.
"I don't want there to be another Maxwell Freed," she says, "and that's why I am fighting like a mother." The gene therapy trial still might be a few years away, but the Weill Cornell one aims to launch very soon—possibly around Mother's Day. This is yet another milestone for Maxwell, another baby step forward—and the best gift a mother can get.
On May 13th, scientific and medical experts will discuss and answer questions about the vaccine for those under 16.
This virtual event will convene leading scientific and medical experts to discuss the most pressing questions around the COVID-19 vaccines for children and teens. A public Q&A will follow the expert discussion.
DATE:
Thursday, May 13th, 2021
12:30 p.m. - 1:45 p.m. EDT
LOCATION:
Virtual on Zoom
REGISTER NOW
You can submit a question for the speakers upon registering.
Dr. H. Dele Davies, M.D., MHCM
Senior Vice Chancellor for Academic Affairs and Dean for Graduate Studies at the University of Nebraska Medical (UNMC). He is an internationally recognized expert in pediatric infectious diseases and a leader in community health.
Dr. Emily Oster, Ph.D.
Professor of Economics at Brown University. She is a best-selling author and parenting guru who has pioneered a method of assessing school safety.
Dr. Tina Q. Tan, M.D.
Professor of Pediatrics at the Feinberg School of Medicine, Northwestern University. She has been involved in several vaccine survey studies that examine the awareness, acceptance, barriers and utilization of recommended preventative vaccines.
Dr. Inci Yildirim, M.D., Ph.D., M.Sc.
Associate Professor of Pediatrics (Infectious Disease); Medical Director, Transplant Infectious Diseases at Yale School of Medicine; Associate Professor of Global Health, Yale Institute for Global Health. She is an investigator for the multi-institutional COVID-19 Prevention Network's (CoVPN) Moderna mRNA-1273 clinical trial for children 6 months to 12 years of age.
About the Event Series
This event is the second of a four-part series co-hosted by Leaps.org, the Aspen Institute Science & Society Program, and the Sabin–Aspen Vaccine Science & Policy Group, with generous support from the Gordon and Betty Moore Foundation and the Howard Hughes Medical Institute.
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