Move With Heart
Move With Heart is a 100-day national challenge uniting families, advocates, and supporters to raise awareness for congenital heart disease. Starting every Fall, participants walk, run, or move in any way they choose—logging miles and sharing their journeys to honor the 1 in 100 babies born with CHD each year. Starting this year, we are also combining elements of healing & connecting with one’s heart. Together, we're turning awareness into action, one step at a time. Every movement tells a story, fuels awareness, and brings us closer to a future where everyone with CHD has the care, research, and hope they deserve.
For People Living with CHD
While surgical outcomes for CHD have improved dramatically since the 1970s, research shows that survival rates have plateaued over the past decade—particularly for complex conditions. Now, the focus is shifting toward improving quality of life and long-term health outcomes through lifestyle interventions. We especially encourage individuals living with congenital heart defects to participate under the guidance of their cardiologist. For decades, people with heart defects were told to avoid physical activity, but recent research shows that exercise can be safe and beneficial. Studies have found that regular movement can enhance exercise capacity, improve cardiac function, and boost quality of life—particularly for those with complex conditions like Fontan physiology.
How to Join
Sign up below to let us know you’re participating!
Join the Project 1 in 100 group on Strava (see below for instructions)
Follow @Project1in100 on Instagram & Facebook
Share your movement, healing & connecting and tag us
Move with Heart - 100 Day Tracker
If you’d like to track your daily activity over the 100 day campaign - please feel free to download the pdf tracker. Get moving!
https://docs.google.com/spreadsheets/d/14PNqpWz0GeoXjJyhSwlnJ720xE9K3VS3wYLeGAXTdBY/edit?usp=sharing
Join Strava
Research
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A 2021 systematic review of 16 studies involving 264 Fontan patients found that exercise training is safe and beneficial. Over half of the studies showed significant improvements in exercise capacity, with participants increasing their oxygen uptake by an average of 6%. Importantly, no negative outcomes were reported from exercise programs. Studies examined various training types—aerobic exercise, resistance training, and combined programs—with sessions typically lasting 8-12 weeks, 2-3 times per week. The conclusion? Exercise training improves not just physical capacity, but also cardiac function and quality of life. For people living with Fontan circulation and other complex heart conditions, movement isn't just safe—it's powerful medicine that can help you thrive.
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The American College of Cardiology and American Heart Association released new guidelines in December 2025 titled "2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease." For the first time, the guidelines emphasize that adults with CHD are not just "allowed" to be physically active—they are actively encouraged to participate in physical activity after proper evaluation by their cardiology team. The guidelines stress the importance of using exercise testing to guide personalized physical activity recommendations, representing a major shift from historical restrictions that kept people with heart defects on the sidelines. With over 90% of babies born with heart defects now surviving into adulthood, these updated recommendations recognize that physical activity is an essential part of heart-healthy living for everyone, including the growing population of adults living with congenital heart disease.
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Historically, people with Fontan circulation were told to avoid physical activity, but research now shows that exercise training is not just safe—it's the most effective non-invasive therapy available for improving exercise capacity and outcomes. The study found that higher aerobic capacity is associated with a 2.9-fold reduced risk of hospitalization or death, and those who participate in regular physical activity from a young age have better Fontan physiology overall. Exercise works by targeting multiple systems at once: it increases skeletal muscle mass (which improves blood return to the heart), enhances the peripheral muscle pump, promotes pulmonary vascular growth, and may prevent the progressive deterioration that can occur with inactivity. Most importantly, exercise training has been shown to improve not just physical capacity but also cardiac function and quality of life—proving that movement is powerful medicine for the Fontan community.