$20M Initiative Aims to Transform Care for Fontan Heart Patients

In a landmark collaboration, the American Heart Association and Additional Ventures have committed a combined $20 million to address critical gaps in care for individuals living with Fontan circulation—the surgically created system that sustains children born with single ventricle heart disease. This condition affects about 6 in 10,000 babies born annually in the U.S., leaving them with only one functional heart pump and reliant on the Fontan procedure, which, while lifesaving, imposes long-term strain on the body and can lead to progressive damage across multiple organs, including the liver, kidneys, and lungs. The six-year, multi-phase initiative aims to transform care from reactive to proactive by evaluating current monitoring approaches, identifying gaps in data and infrastructure, and engaging patients, clinicians, and researchers to develop scientific insights and clinical tools for earlier prediction, detection, and management of complications.

The program leverages the American Heart Association's robust research infrastructure, guideline development, and registry science alongside Additional Ventures' deep expertise and strategic leadership in single ventricle heart disease, creating a coordinated effort to build the foundation for a future standard of care. As noted by Mariell Jessup, M.D., of the American Heart Association, this collaboration will generate data to help patients and clinicians better monitor health and intervene earlier, addressing the current lack of reliable monitoring methods that often leaves patients appearing stable until sudden, severe complications arise. Kirstie Keller, Ph.D., of Additional Ventures, emphasized the goal of enabling a more proactive, science-informed approach to lifelong care, building on the foundation's commitment to curing single ventricle heart disease through transformative research, as detailed in their Impact Report.

This initiative represents a significant step toward improving outcomes for the Fontan population, who face complex, lifelong health challenges due to their circulation. By fostering collaboration across the single ventricle heart disease ecosystem and focusing on tools for early intervention, the effort seeks to reduce fatalities and enhance quality of life, ultimately aiming to establish a new paradigm in cardiovascular care. For more information, visit heart.org or additionalventures.org, and view the original release on www.newmediawire.com for further details.