DALLAS, March 30, 2026 — The lifesaving surgery used to treat children with single ventricle heart disease, the Fontan procedure, can pose serious health complications throughout life. The American Heart Association, devoted to changing the future to a world of healthier lives for all and Additional Ventures, a research foundation working toward a cure for single ventricle heart disease, have committed a combined $20M to advance a coordinated, collaborative approach to improving the ability to predict, prevent and treat health complications in people living with Fontan circulation.
Single ventricle heart disease affects about 6 in 10,0000 babies born in the US each year [1] . These children are born with only one working heart pump and must rely on a surgically created circulation (the Fontan circulation) to reroute blood through the body. While lifesaving, this circulation places long-term strain on the body and can lead to progressive damage across multiple organs. Today, clinicians lack reliable ways to monitor Fontan health, making them unable 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 program will bring together clinicians, researchers and patients to generate scientific and clinical insights and develop tools to better guide care for people living with Fontan circulation. The program combines the strength of the American Heart Association’s research infrastructure, guideline development, data coordination and registry science with Additional Ventures’ leadership in single ventricle strategy, deep scientific expertise and unparalleled network across the single ventricle heart disease ecosystem.
“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 coordination between our two organizations will generate data and insight that can help patients and clinicians better monitor their health and intervene earlier.”
“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. “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. By building these resources, we hope to enable a more proactive, science-informed approach to lifelong care for Fontan patients.
The six-year, 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 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 of patients with Fontan circulation, creating the infrastructure for a future standard of care.
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About the American Heart Association
The American Heart Association is a relentless force for a world of longer, healthier lives. Dedicated to ensuring equitable health in all communities, the organization has been a leading source of health information for more than one hundred years. Supported by more than 35 million volunteers globally, we fund groundbreaking research, advocate for the public’s health and provide critical resources to save and improve lives affected by cardiovascular disease and stroke. By driving breakthroughs and implementing proven solutions in science, policy, and care, we work tirelessly to advance health and transform lives every day. Connect with us on heart.org , Facebook , X or by calling 1-800-AHA-USA1.
About Additional Ventures
Additional Ventures is a research foundation committed to curing single ventricle heart disease through transformative research and strategic investments that revolutionize treatment and care. By combining deep scientific expertise with strategic, flexible funding, Additional Ventures supports bold, collaborative research across the translational pipeline. Since its founding in 2020, Additional Ventures has committed more than $110 million to single ventricle heart disease research. Learn more about our work and progress in our most recent Impact Report , at additionalventures.org , or by following us on LinkedIn .