Coya Therapeutics' Daniel Barvin: A Personal Mission to End Genetic ALS and FTD

Daniel Barvin, VP of Operations and Patient Advocacy at Coya Therapeutics, is spearheading a deeply personal fight against amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). As a carrier of the C9orf72 mutation, which significantly increases his risk of developing these neurodegenerative diseases, Barvin has transitioned from a successful career in wealth management to become a key player in the biotech industry's battle against ALS and FTD.

From Wall Street to Biotech: A Transformative Journey

In 2017, Barvin's life took an unexpected turn when he discovered he carried the C9orf72 mutation. This revelation prompted a profound shift in his career trajectory. "I said, 'Look, chasing money is not what I'm put on this earth for,'" Barvin recounted. His personal experience with ALS and FTD, having watched his father and two of his father's siblings succumb to these diseases, drove him to address the "true lack of resources, of guidance" for those at risk.

Barvin left his position at Morgan Stanley to found Genetic ALS & FTD: End The Legacy, a patient group dedicated to supporting individuals at genetic risk for these diseases. His efforts caught the attention of Howard Berman, founder of Coya Therapeutics, who reached out to Barvin in January 2021. This connection led to Barvin becoming Coya's first employee, where he now plays a crucial role in developing COYA 302, a regulatory T cell (Treg)-targeted therapy for ALS, FTD, Parkinson's disease, and Alzheimer's disease.

COYA 302: A Promising Therapy in Development

Coya Therapeutics' lead candidate, COYA 302, has shown encouraging results in early studies. In a small proof of concept study published in Frontiers Neurology, the therapy demonstrated the ability to slow disease progression and reduce levels of disease biomarkers in four people with ALS, including one carrier of the C9orf72 mutation.

The FDA accepted Coya's investigational new drug application for a Phase II trial in ALS in August, with the company officially launching the trial in September. Barvin anticipates potential topline data within a year, expressing cautious optimism about the therapy's potential impact on patients' lives.

Advocating for Presymptomatic Care: Healthcare 3.0

Barvin's vision extends beyond treating symptomatic patients. He emphasizes the importance of reaching individuals at high risk of ALS or FTD before symptoms manifest—a concept he refers to as "healthcare 3.0." This approach aims to revolutionize how society views health, future, and longevity.

"I think 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 stated. He believes that advancements in presymptomatic interventions could significantly impact both patient outcomes and the willingness of at-risk individuals to undergo genetic testing.

Barvin's commitment to this cause is unwavering, driven by both professional dedication and personal stakes. "I want to be in the biotech space addressing ALS, FTD, other terrible diseases for the rest of my life," he affirmed, underscoring his determination to contribute to wiping ALS "off the face of this earth."