The American Heart Association and Additional Ventures have committed a combined $20 million to address significant healthcare challenges facing individuals with single ventricle heart disease who have undergone the Fontan procedure. This six-year initiative represents a coordinated effort to transform how patients with this complex condition are monitored and treated throughout their lives.
Single ventricle heart disease affects approximately 6 in 10,000 babies born in the United States each year, according to data published in ScienceDirect. These children are born with only one functioning heart pump and must rely on surgically created Fontan circulation to reroute blood through their bodies. While lifesaving, this circulation places long-term strain on multiple organs and can lead to progressive damage that often goes undetected until severe complications occur.
"People with Fontan circulation often develop complications with other organs in the body including the liver, kidneys and lungs," said Mariell Jessup, M.D., FAHA, chief medical and science officer of the American Heart Association. The current lack of reliable monitoring tools means clinicians cannot detect early signs of decline, leaving patients vulnerable to sudden, potentially fatal complications that severely impact quality of life.
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 scientific expertise. Kirstie Keller, PhD, chief executive officer of Additional Ventures, explained: "While lifesaving, Fontan circulation creates complex, lifelong health challenges for single ventricle heart disease patients that we still do not fully understand. 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."
The multi-phase strategy begins with evaluating current approaches to monitoring Fontan circulation patients, identifying gaps in care, data and infrastructure, and engaging patients, clinicians and scientists in program design. Additional Ventures has committed more than $110 million to single ventricle heart disease research since its founding in 2020, as detailed in their Impact Report. The American Heart Association brings over a century of cardiovascular health expertise to the partnership.
Ultimately, the initiative aims to establish the scientific foundation and clinical tools needed to move from reactive care to proactive health monitoring for Fontan patients. This represents a fundamental shift in approach that could create new standards of care for this vulnerable population. By building resources that enable earlier intervention, the collaboration seeks to improve long-term outcomes and quality of life for individuals living with the consequences of single ventricle heart disease and Fontan circulation.
