When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Savannah Salazar (left) and her mother, Tracy Dixon-Salazaar, who earned a PhD in neurobiology in the quest for a treatment of her daughter's seizure disorder.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
“Siri, Read My Mind”: A New Device Lets Users Think Commands
Arnav Kapur, a researcher in the Fluid Interfaces Group at MIT, wears an earlier prototype of the AlterEgo. A newer version is more discreet.
Sometime in the near future, we won't need to type on a smartphone or computer to silently communicate our thoughts to others.
"We're moving as fast as possible to get the technology right, to get the ethics right, to get everything right."
In fact, the devices themselves will quietly understand our intentions and express them to other people. We won't even need to move our mouths.
That "sometime in the near future" is now.
At the recent TED Conference, MIT student and TED Fellow Arnav Kapur was onstage with a colleague doing the first live public demo of his new technology. He was showing how you can communicate with a computer using signals from your brain. The usually cool, erudite audience seemed a little uncomfortable.
"If you look at the history of computing, we've always treated computers as external devices that compute and act on our behalf," Kapur said. "What I want to do is I want to weave computing, AI and Internet as part of us."
His colleague started up a device called AlterEgo. Thin like a sticker, AlterEgo picks up signals in the mouth cavity. It recognizes the intended speech and processes it through the built-in AI. The device then gives feedback to the user directly through bone conduction: It vibrates your inner ear drum and gives you a response meshing with your normal hearing.
Onstage, the assistant quietly thought of a question: "What is the weather in Vancouver?" Seconds later, AlterEgo told him in his ear. "It's 50 degrees and rainy here in Vancouver," the assistant announced.
AlterEgo essentially gives you a built-in Siri.
"We don't have a deadline [to go to market], but we're moving as fast as possible to get the technology right, to get the ethics right, to get everything right," Kapur told me after the talk. "We're developing it both as a general purpose computer interface and [in specific instances] like on the clinical side or even in people's homes."
Nearly-telepathic communication actually makes sense now. About ten years ago, the Apple iPhone replaced the ubiquitous cell phone keyboard with a blank touchscreen. A few years later, Google Glass put computer screens into a simple lens. More recently, Amazon Alexa and Microsoft Cortana have dropped the screen and gone straight for voice control. Now those voices are getting closer to our minds and may even become indistinguishable in the future.
"We knew the voice market was growing, like with getting map locations, and audio is the next frontier of user interfaces," says Dr. Rupal Patel, Founder and CEO of VocalID. The startup literally gives voices to the voiceless, particularly people unable to speak because of illness or other circumstances.
"We start with [our database of] human voices, then train our deep learning technology to learn the pattern of speech… We mix voices together from our voice bank, so it's not just Damon's voice, but three or five voices. They are different enough to blend it into a voice that does not exist today – kind of like a face morph."
The VocalID customer then has a voice as unique as he or she is, mixed together like a Sauvignon blend. It is a surrogate voice for those of us who cannot speak, just as much as AlterEgo is a surrogate companion for our brains.
"I'm very skeptical keyboards or voice-based communication will be replaced any time soon."
Voice equality will become increasingly important as Siri, Alexa and voice-based interfaces become the dominant communication method.
It may feel odd to view your voice as a privilege, but as the world becomes more voice-activated, there will be a wider gap between the speakers and the voiceless. Picture going shopping without access to the Internet or trying to eat healthily when your neighborhood is a food desert. And suffering from vocal difficulties is more common than you might think. In fact, according to government statistics, around 7.5 million people in the U.S. have trouble using their voices.
While voice communication appears to be here to stay, at least for now, a more radical shift to mind-controlled communication is not necessarily inevitable. Tech futurist Wagner James Au, for one, is dubious.
"I'm very skeptical keyboards or voice-based communication will be replaced any time soon. Generation Z has grown up with smartphones and games like Fortnite, so I don't see them quickly switching to a new form factor. It's still unclear if even head-mounted AR/VR displays will see mass adoption, and mind-reading devices are a far greater physical imposition on the user."
How adopters use the newest brain impulse-reading, voice-altering technology is a much more complicated discussion. This spring, a video showed U.S. House Speaker Nancy Pelosi stammering and slurring her words at a press conference. The problem is that it didn't really happen: the video was manufactured and heavily altered from the original source material.
So-called deepfake videos use computer algorithms to capture the visual and vocal cues of an individual, and then the creator can manipulate it to say whatever it wants. Deepfakes have already created false narratives in the political and media systems – and these are only videos. Newer tech is making the barrier between tech and our brains, if not our entire identity, even thinner.
"Last year," says Patel of VocalID, "we did penetration testing with our voices on banks that use voice control – and our generation 4 system is even tricky for you and me to identify the difference (between real and fake). As a forward-thinking company, we want to prevent risk early on by watermarking voices, creating a detector of false voices, and so on." She adds, "The line will become more blurred over time."
Onstage at TED, Kapur reassured the audience about who would be in the driver's seat. "This is why we designed the system to deliberately record from the peripheral nervous system, which is why the control in all situations resides with the user."
And, like many creators, he quickly shifted back to the possibilities. "What could the implications of something like this be? Imagine perfectly memorizing things, where you perfectly record information that you silently speak, and then hear them later when you want to, internally searching for information, crunching numbers at speeds computers do, silently texting other people."
"The potential," he concluded, "could be far-reaching."
A new video game exposes players to the deceptive tactics that are used to spread misinformation online, in an attempt to reduce people's susceptibility to fake news.
There's no shortage of fake news going around the internet these days, but how do we become more aware as consumers of what's real and what's not?
"We are hoping to create what you might call a general 'vaccine' against fake news, rather than trying to counter each specific conspiracy or falsehood."
Researchers at the University of Cambridge may have answered just that by developing an online game designed to expose and educate participants to the tactics used by those spreading false information.
"We wanted to see if we could preemptively debunk, or 'pre-bunk', fake news by exposing people to a weak dose of the methods used to create and spread disinformation, so they have a better understanding of how they might be deceived," Dr Sander van der Linden, Director of the Cambridge Social Decision-Making Lab, said in a statement.
"This is a version of what psychologists call 'inoculation theory', with our game working like a psychological vaccination."
In February 2018, van der Linden and his coauthor, Jon Roozenbeek, helped launch the browser game, "Bad News," where players take on the role of "Disinformation and Fake News Tycoon."
They can manipulate news and social media within the game by several different methods, including deploying twitter-bots, photo-shopping evidence, creating fake accounts, and inciting conspiracy theories with the goal of attracting followers and maintaining a "credibility score" for persuasiveness.
In order to gauge the game's effectiveness, players were asked to rate the reliability of a number of real and fake news headlines and tweets both before and after playing. The data from 15,000 players was evaluated, with the results published June 25 in the journal Palgrave Communications.
The results concluded that "the perceived reliability of fake news before playing the game had reduced by an average of 21% after completing it. Yet the game made no difference to how users ranked real news."
Just 15 minutes of playing the game can have a moderate effect on people, which could play a major role on a larger scale.
Additionally, participants who "registered as most susceptible to fake news headlines at the outset benefited most from the 'inoculation,'" according to the study.
Just 15 minutes of playing the game can have a moderate effect on people, which could play a major role on a larger scale when it comes to "building a societal resistance to fake news," according to Dr. van der Linden.
"Research suggests that fake news spreads faster and deeper than the truth, so combating disinformation after-the-fact can be like fighting a losing battle," he said.
"We are hoping to create what you might call a general 'vaccine' against fake news, rather than trying to counter each specific conspiracy or falsehood," Roozenbeek added.
Van der Linden and Roozenbeek's work is an early example of the potential methods to protect people against deception by training them to be more attuned to the methods used to distribute fake news.
"I hope that the positive results give further credence to the new science of prebunking rather than only thinking about traditional debunking. On a larger level, I also hope the game and results inspire a new kind of behavioral science research where we actively engage with people and apply insights from psychological science in the public interest," van der Linden told leapsmag.
"I like the idea that the end result of a scientific theory is a real-world partnership and practical tool that organizations and people can use to guard themselves against online manipulation techniques in a novel and hopefully fun and engaging manner."
Ready to be "inoculated" against fake news? Then play the game for yourself.