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

Daniel Barvin, VP of Operations and Patient Advocacy at Coya Therapeutics and a carrier of the C9orf72 mutation, is leading a charge against amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). His journey from wealth management to biotech exemplifies a growing trend of personal investment in the pharmaceutical industry's fight against neurodegenerative diseases.

A Career Shift Driven by Genetic Risk

In 2017, Barvin's life took an unexpected turn when he discovered he carried the C9orf72 mutation, significantly increasing his risk of developing ALS and FTD. This revelation prompted a dramatic career change, leading him to found Genetic ALS & FTD: End The Legacy, a patient advocacy group, before joining Coya Therapeutics in 2021.

Barvin's personal connection to ALS and FTD runs deep. Having witnessed his father and two paternal aunts or uncles succumb to these diseases, he recognized a critical gap in resources and guidance for at-risk individuals. This experience now serves as a driving force behind Coya's mission, with Barvin noting, "Everyone knows my story at Coya, and I think that it's a rallying cry for what we're doing."

COYA 302: A Promising Therapeutic Approach

Coya Therapeutics is developing COYA 302, a regulatory T cell (Treg)-targeted therapy for ALS, FTD, Parkinson's disease, and Alzheimer's disease. The company recently launched a Phase II trial for ALS, following the FDA's acceptance of their investigational new drug application in August.

Early results from a proof-of-concept study published in Frontiers Neurology have shown promise. In a small cohort of four ALS patients, including one with the C9orf72 mutation, COYA 302 demonstrated the ability to slow disease progression and reduce levels of disease biomarkers. One patient experienced an unprecedented 11-point increase on the ALS Functional Rating Scale (ALSFRS-R), while the others showed a significantly slowed decline compared to pre-treatment rates.

Shifting Paradigms: From Symptomatic to Presymptomatic Care

Barvin advocates for a paradigm shift in healthcare, which he terms "healthcare 3.0." This approach emphasizes the importance of presymptomatic care and intervention, particularly for individuals at high genetic risk for neurodegenerative diseases.

The approval of Biogen and Ionis' Qalsody in 2023 for ALS patients with SOD1 gene mutations has already begun to change perspectives on genetic testing. Barvin believes that as more interventions become available, more individuals will be willing to undergo genetic testing and take proactive measures.

For Barvin, the fight against ALS and FTD is deeply personal. With two children free from the C9orf72 mutation, he sees the potential to end the genetic legacy of these diseases in his family line. Looking to the future, he remains committed to the biotech space, stating, "I want to be in the biotech space addressing ALS, FTD, other terrible diseases for the rest of my life."