The BioSpace 40 Under 40 winner opens up about his very personal career transformation from wealth management to biotech—and what it’s like to develop a drug for amyotrophic lateral sclerosis and frontotemporal dementia as a potential patient himself.
Daniel Barvin is in the battle of his life. Through his role as VP of Operations and Patient Advocacy at Coya Therapeutics and as a carrier of the C9orf72 mutation—which significantly increases his chances of acquiring amyotrophic lateral sclerosis and frontotemporal dementia (FTD)—Barvin is fighting to both treat the deadly neurodegenerative diseases and end the genetic legacy.
In 2017, Barvin had just gotten married, picked up his MBA and was on the rise in wealth management at Morgan Stanley. Then, he discovered that he carried the damning C9orf72 mutation. “And it just put everything in perspective,” Barvin, a member of BioSpace’s inaugural 40 Under 40, told me in a recent interview. “I said, ‘Look, chasing money is not what I’m put on this earth for.’”
Barvin explained that he’s had “too much experience” with ALS and FTD. Watching his father and two of his father’s siblings succumb to one or both of the diseases, he saw a “true lack of resources, of guidance,” for those at risk in the next generation. So he set out to change that. He left Morgan Stanley and founded Genetic ALS & FTD: End The Legacy, a patient group dedicated to the needs and interests of people at genetic risk for the diseases.
In January 2021, he had just gotten End The Legacy off the ground when Coya founder Howard Berman reached out on LinkedIn. “[He] sent me a message and said, ‘Daniel, I’m commercializing Dr. Stanley Appel’s regulatory T cell therapy. Would you like to talk?’”
Barvin was extremely familiar with Appel—a renowned ALS researcher at Houston Methodist Neurological Institute who had treated his Uncle Bill when Barvin was a young child. And being a carrier of C9orf72, Barvin was always tracking different ALS trials, “and his regulatory T cell therapy was one of the most promising,” he said. “So I was like, ‘Oh my goodness, yes, I will do anything to have a conversation about this. And we had a conversation the next day, and he said, ‘Daniel, you’re hired. Let’s go.’”
Healthcare 3.0
Barvin became Coya’s first employee. The Houston-based company has since added eight more people, and they’re all familiar with Barvin’s family history.
“Everyone knows my story at Coya, and I think that it’s a rallying cry for what we’re doing.” He added that he’s not alone in his personal connection to the diseases they’re fighting. “We have clinicians, we have people who have obviously lost their loved ones to a degenerative disease. That life experience comes through for all of us in terms of our dedication, in terms of our devotion.”
The team is developing COYA 302, a regulatory T cell (Treg)-targeted therapy for ALS, FTD, Parkinson’s disease and Alzheimer’s disease. The FDA in August accepted Coya’s investigational new drug application for a Phase II trial in ALS, which the company officially launched in September. Barvin hopes to be able to look at topline data “maybe in a year or so.”
In a small proof of concept study published last year in Frontiers Neurology, COYA 302 slowed disease progression and reduced levels of disease biomarkers in four people with ALS. Three of the participants had sporadic disease, while one carried the C9orf72 mutation. One patient experienced an unprecedented 11-point increase on the ALS Functional Rating Scale (ALSFRS-R), indicating a significant functional improvement, while the other three participants saw slowed decline—an average decline of 0.47 points per month compared to the 1.1-point monthly loss prior to treatment.
As much as Barvin believes in the potential of COYA 302, he ideally wants to reach those at high risk of ALS or FTD before they start showing symptoms—people like himself.
In 2022, Barvin was on a panel discussing the journey of Brian Wallach, who, with his wife Sandra Abrevaya, founded I AM ALS and have been staunch advocates for patients and research. Barvin wasn’t intending to juxtapose his life with Wallach’s, but the comparisons were hard to ignore. Wallach was diagnosed with ALS in 2017; Barvin found out he carried the C9orf72 gene the following year, and both men started advocating and fighting for their lives around the same time.
“[Wallach] started I AM ALS and had the support of the Obamas and all these people, and here I was, shouting from the mountaintops that the presymptomatic community needed resources . . . and getting ‘no’s from so many people. And a part of me felt like, just because I’m not dying, no one cares,” Barvin said. “I think that that needs to be the revolution for the entire world, how we look at our health and how we look at our future and our longevity, and I hope to change that.” Barvin called this shift toward presymptomatic care “healthcare 3.0.”
For patients, promising research—both symptomatic and presymptomatic—is critical for another reason: psychological wellbeing. When Barvin found out he was a carrier of C9orf72, he was told he had about a 95% chance of developing ALS and/or FTD by the time he was 80. Since then, further research supported by End The Legacy suggests that because three of four siblings in his father’s family were afflicted in their forties, Barvin has a greater chance of being affected as well.
In a disease state where there is no available intervention, people are unlikely to undergo genetic testing, he said. For some ALS patients—those whose disease is caused by a mutation in the superoxide dismutase 1 (SOD1) gene—this changed with the 2023 approval of Biogen and Ionis’ Qalsody. “I think that skyrocketed genetic testing, and that skyrocketed people saying, ‘You know what, I will undergo this journey to find out, because there is an intervention.’”
No Plans To Give Up
Barvin said he chose to get tested despite the lack of available intervention for C9orf72-linked disease partly for family planning purposes. “We knew we wanted to have kids in our family . . . and that was really the torch that carried us through genetic testing,” he said. “If we can be the last ones in my family line to ever deal with this, oh my God, we’ll do anything.”
Today, Barvin and his wife, Kaori, have “two amazing kids, who are free from C9.”
As for the future, Barvin said it would be “heartbreaking” to him if COYA 302 does not work. But even if that were to happen, he has no plans to give up. “I want to be in the biotech space addressing ALS, FTD, other terrible diseases for the rest of my life.”
Of ALS, he said, “I think that everyone understands that this is a disease that needs to be wiped off the face of this earth, and we have a chance to do it.”
