The American Heart Association and Additional Ventures have committed a combined $20 million to advance a coordinated approach to improving care for people living with Fontan circulation, the surgically created system that sustains those born with single ventricle heart disease. This six-year initiative seeks to address the serious health complications that can develop throughout life following the lifesaving Fontan procedure.
Single ventricle heart disease affects approximately 6 in 10,000 babies born in the United States each year. These children are born with only one functional heart pump and depend on the Fontan circulation to reroute blood through their bodies. While this surgical intervention saves lives, it places long-term strain on the body that can lead to progressive damage across multiple organs, including the liver, kidneys, and lungs.
"People with Fontan circulation often develop complications with other organs in the body," said Mariell Jessup, M.D., FAHA, chief medical and science officer of the American Heart Association. The current challenge lies in the lack of reliable monitoring tools, leaving clinicians unable to detect early signs of decline. Consequently, many patients appear stable until they suddenly experience severe, potentially fatal complications that significantly impact quality of life.
The program will leverage the American Heart Association's research infrastructure, guideline development capabilities, data coordination, and registry science, combined with Additional Ventures' leadership in single ventricle strategy and deep scientific expertise. This collaboration aims to generate the scientific insights and clinical tools necessary to predict, prevent, and treat health complications more effectively. More information about Additional Ventures' work can be found at https://additionalventures.org.
"While lifesaving, Fontan circulation creates complex, lifelong health challenges for single ventricle heart disease patients that we still do not fully understand," said Kirstie Keller, PhD, chief executive officer of Additional Ventures. The multi-phase strategy begins with evaluating current monitoring approaches, identifying gaps in care and data infrastructure, and engaging patients, clinicians, and scientists in program design. The ultimate goal is to establish the scientific foundation needed to shift from reactive care to proactive health monitoring.
This initiative represents a significant investment in translational research that could transform the standard of care for Fontan patients. By building resources for earlier detection and management of complications, the collaboration hopes to enable a more science-informed approach to lifelong care. The American Heart Association provides public health resources at https://heart.org.
For business and technology leaders, this announcement highlights how strategic partnerships between established medical organizations and specialized research foundations can accelerate innovation in healthcare. The development of predictive monitoring tools and data-driven care protocols could serve as a model for addressing other complex chronic conditions, demonstrating the impact of coordinated investment in medical research infrastructure and collaborative science.
