An image from one of TRIPP's virtual reality experiences for mental wellness. Nanea Reeves is TRIPP's CEO.
The "Making Sense of Science" podcast features interviews with leading experts about health innovations and the ethical questions they raise. The podcast is hosted by Matt Fuchs, editor of Leaps.org, the award-winning science outlet.
My guest today is Nanea Reeves, the CEO of TRIPP, a wellness platform with some big differences from meditation apps you may have tried like Calm and Headspace. TRIPP's experiences happen in virtual reality, and its realms are designed based on scientific findings about states of mindfulness. Users report feelings of awe and wonder and even mystical experiences. Nanea brings over 15 years of leadership in digital distribution, apps and video game technologies. Before co-founding TRIPP, she had several other leadership roles in tech with successful companies like textPlus and Machinima. Read her full bio below in the links section.
Nanea Reeves, CEO of TRIPP.
TRIPP
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This conversation coincided with National Brain Awareness Week. The topic is a little different from the Making Sense of Science podcast’s usual focus on breakthroughs in treating and preventing disease, but there’s a big overlap when it comes to breakthroughs in optimal health. Nanea’s work is at the leading edge of health, technology and the science of wellness.
With TRIPP, you might find yourself deep underwater, looking up at the sunlight shimmering on the ocean surface, or in the cosmos staring down at a planet glowing with an arresting diversity of colors. Using TRIPP for the past six months has been a window for me into the future of science-informed wellness and an overall fascinating experience, as was my conversation with Nanea.
Show notes:
Nanea and I discuss her close family members' substance addictions and her own struggle with mental illness as a teen, which led to her first meditation experiences, and much more:
- The common perception that technology is an obstacle for mental well-being, a narrative that overlooks how tech can also increase wellness when it’s designed right.
- Emerging ways of measuring meditation experiences by recording brain waves - and the shortcomings of the ‘measured self’ movement.
- Why TRIPP’s users multiplied during the stress and anxiety of the pandemic, and how TRIPP can can be used to enhance emotional states.
- Ways in which TRIPP’s visuals and targeted sound frequencies have been informed by innovative research from psychologists like Johns Hopkins’ Matthew Johnson.
- Ways to design apps and other technologies to better fulfill the true purpose of mindfulness meditation. (Hint: not simply relaxation.)
- And of course, because the topic is mental wellness and tech, I had to get Nanea's thoughts on Elon Musk, Neuralink and brain machine interfaces.
Here are links for learning more about TRIPP:
- TRIPP website: https://www.tripp.com/about/
- Nanea Reeves bio: https://www.tripp.com/team/nanea-reeves/
- Study of data collected by UK's Office for National Statistics on behavior during the pandemic, which suggests that TRIPP enhanced users' psychological and emotional mindsets: https://link.springer.com/chapter/10.1007/978-3-03...
- Research that's informed TRIPP: https://www.tripp.com/research/
- Washington Post Top Pick at CES: https://www.washingtonpost.com/technology/2019/01/...
- TRIPP's new offering, PsyAssist, to provide support for ketamine-assisted therapy: https://www.mobihealthnews.com/news/tripp-acquires...
- Randomized pilot trial involving TRIPP: https://bmjopen.bmj.com/content/bmjopen/11/4/e0441...
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.