The American Heart Association and Additional Ventures have announced a combined $20 million commitment to address critical gaps in care for individuals with single ventricle heart disease, a condition affecting approximately 6 in 10,000 babies born in the U.S. each year. The initiative focuses on improving the ability to predict, prevent, and treat health complications in people living with Fontan circulation, the surgically created circulation that reroutes blood through the body for those born with only one working heart pump.
While lifesaving, the Fontan procedure places long-term strain on the body, often leading to progressive damage across multiple organs, including the liver, kidneys, and lungs. Currently, clinicians lack reliable ways to monitor Fontan health, making it difficult to detect early signs of decline. As a result, many patients appear stable until they suddenly experience severe complications that can be fatal or severely impact quality of life.
The six-year, multi-phase strategy will bring together clinicians, researchers, and patients to generate scientific and clinical insights and develop tools to better guide care. The program combines the American Heart Association’s research infrastructure, guideline development, data coordination, and registry science with Additional Ventures’ leadership in single ventricle strategy and deep scientific expertise. “The coordination between our two organizations will generate data and insight that can help patients and clinicians better monitor their health and intervene earlier,” said Mariell Jessup, M.D., FAHA, chief medical and science officer of the American Heart Association.
“Through this collaboration, we will work with researchers, clinicians and patients to generate the scientific insights and tools needed to predict, detect and manage complications earlier,” said Kirstie Keller, PhD, chief executive officer of Additional Ventures. “By building these resources, we hope to enable a more proactive, science-informed approach to lifelong care for Fontan patients.”
The initial phase includes evaluating current approaches to monitoring Fontan circulation patients, identifying gaps in care, data, and infrastructure, and engaging patients, clinicians, and scientists in program design and implementation. Ultimately, the goal is to establish the scientific foundation and clinical tools needed to move the field from reactive care to proactive health monitoring, creating the infrastructure for a future standard of care. For more information, visit heart.org and additionalventures.org.
This collaboration underscores the urgent need to improve outcomes for the thousands of individuals living with single ventricle heart disease. By addressing the critical gaps in care, the initiative aims to transform the lifelong management of Fontan patients, offering hope for earlier detection and intervention to prevent severe complications.
