Action Learning Network

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Action Learning Network

Patients, families, doctors, nurses, researchers, and industry working to improve outcomes for children and ACHD patients with heart dysfunction

09/02/2026

Congratulations to our newest Member of the Month, Kerry Schindler, VAD Coordinator at NewYork-Presbyterian Morgan Stanley Children’s Hospital/Columbia! 🎉

For Kerry, ACTION is an opportunity to connect with others, share experiences and learn from the successes and challenges of teams across the network. As she shared, “It feels good to know that I can reach out to a fellow ACTION/VAD member for advice or simply bounce ideas off each other.”

Get to know Kerry, including her favorite travel destination and the advice she reminds herself to follow here: https://bit.ly/4i2DaGJ!

08/31/2026

As cardiac care for Duchenne muscular dystrophy continues to evolve, so does our understanding of emerging therapies.

In a recent publication in Pediatric Cardiology, ACTION investigators report the first description of SGLT2 inhibitor use in patients with dystrophin-deficient cardiomyopathy using data from the ACTION registry. Among 80 patients treated across ACTION centers, SGLT2 inhibitors were generally well tolerated, with a low rate of treatment discontinuation due to adverse events. While longer-term follow-up is needed to understand their impact on heart function, these findings represent an important step toward expanding treatment options for patients with DMD.

Read the full publication here: https://bit.ly/4xq2QSo!

08/26/2026

A recent ACTION publication in ASAIO Journal explores the use of the HeartMate 3 ventricular assist device in children, small adults, and patients with complex congenital heart disease. The review shares practical insights on patient selection, device management, anticoagulation, rehabilitation, and long-term support, while highlighting the value of multicenter collaboration in advancing care for these unique populations.

Learn more here: https://bit.ly/4d2qyff!

08/17/2026

What happens when clinicians, researchers, patients, and families work together to improve care? The result is ACTION, a collaborative learning health system dedicated to advancing outcomes for pediatric and congenital heart failure.

A recent review published in Structural & Congenital Heart Disease highlights how ACTION is using real-world data, quality improvement, and multicenter collaboration to drive research and improve care.

Learn more here: https://bit.ly/4x2GSVg!

08/03/2026

For some children with advanced heart failure, a ventricular assist device (VAD) can provide critical support while their heart transplant candidacy is being evaluated. A recent ACTION study published in ASAIO Journal offers new insights into this important treatment strategy and helps inform care decisions for patients, families, and clinicians.

Learn more here: https://bit.ly/3TCeScn!

07/29/2026

Did you know ACTION has a YouTube channel? 📽

From heart-healthy exercise videos and educational content to webinar recordings and collaborative projects, our channel is packed with resources for patients, families, and healthcare professionals.

Subscribe and explore our growing video library: https://bit.ly/4fZsRSi!

07/27/2026

Improving cardiac outcomes in Duchenne muscular dystrophy requires more than awareness - it requires coordinated action across the entire care continuum.

From early detection to longitudinal management to advanced therapies when appropriate, each step shapes outcomes.

At ACTION, we’re seeing progress through:
🔹 More consistent surveillance
🔹 Earlier referrals for advanced heart failure care
🔹 Stronger collaboration across specialties and centers

This is how care evolves - from recognition to action to impact.

Learn more here: https://bit.ly/4x5WU0l!

07/13/2026

🎓 Congratulations to our graduating ACTION Fellows! We're excited to see all that you'll accomplish as you begin your careers as attendings and leaders in pediatric heart failure, VAD, and transplant care.

🎉 At the same time, we're thrilled to welcome our newest cohort of ACTION Fellows!

Over the coming year, fellows will have opportunities to connect with peers across the network, participate in journal clubs and research collaborations, engage in device-focused education, and learn from experts through interactive virtual seminars.

Know a 4th-year Fellow or CVICU/Categorical Fellow interested in HF/VAD/Transplant? We'd love to connect!

Email us at [email protected] to learn more or get involved.

07/08/2026

こんにちは 👋 and welcome to the newest members of the ACTION family!

We’re excited to welcome the National Cerebral and Cardiovascular Center, Osaka University, Tokyo Women’s Medical University, and the University of Tokyo to our growing network. We can't wait to see where this collaboration takes us! ❤️🇯🇵

07/06/2026

For children with advanced heart failure, a ventricular assist device (VAD) can be a lifesaving therapy. While these devices are often used to bridge patients to heart transplant, some children recover enough heart function to have the device removed.

A recent ACTION study published in the Journal of Heart and Lung Transplantation examined outcomes after VAD explantation for myocardial recovery. Although this outcome was rare, researchers found that most children remained free from transplant or additional mechanical support after device removal.

These findings highlight the potential for heart recovery in select pediatric patients and the importance of identifying which children may benefit most from this approach. Learn more here: https://bit.ly/3RgIvPE!

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http://www.actionlearningnetwork.org/

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