transplant

The Pulse — November 2024

News, The Pulse

Happy Fall to All! We had a successful meeting during the Single Ventricle Investigators Meeting in Denver this month, and it was great to see so many of you in person! Many new junior faculty and leaders of all experience levels have joined ACTION, and we are excited to continue our progress in the VAD, Heart Failure, Muscular Dystrophy, and Fontan spaces. We are grateful for the engagement and collaboration from all stakeholders that continue to excel our research, quality improvement, education, and advocacy efforts.

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Pediatric Learning Health Networks in Solid Organ Transplantation—Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation

ACTION Publication, Publications

ACTION and the Academic Research Consortium (ARC) aimed to harmonize definitions of pediatric and CHD AEs for use in clinical trials, registries, and regulatory evaluation.

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Defying the Odds: Riley’s Life with Duchenne

Patient Stories, Stories

On any given day, you may find Riley watching live sports in his home state of Montana. You may not know that Riley has been living with Duchenne Muscular Dystrophy since he was 3 years old. With his family’s fierce support, he’s lived wholeheartedly despite the challenges of his condition. From intensive heart transplant surgery to obtaining a college degree, Riley follows his mother Nina’s advice: that a “life is meant to be lived.”

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Reducing donor acceptance practice variation – Learnings from a discussion forum

ACTION Publication, Publications

Although waitlist mortality is unacceptably high, nearly half of donor heart offers are rejected by pediatric heart transplant centers. ACTION and PHTS convened a multi-institutional donor decision discussion forum (DDDF) aimed at assessing donor acceptance practices and reducing practice variation.

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Raylan

A New Heart, A New Community: Raylan’s Story

Patient Stories, Stories

From the moment Raylan was born, he fought for his life. Born with cardiomyopathy, Raylan was placed on the transplant list at seven weeks old. His parents, Bonnie and Craig, could only sit and wait for answers about their baby. After agonizing challenges, numerous roadblocks, and more than a few long nights, Bonnie and Craig brought their baby home and found a new community along the way.

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Finding Light in the Dark: Brynn’s Story

Patient Stories, Stories

One weekend, Jimmie noticed his 16-month-old daughter, Brynn, was breathing strangely. One week later, Brynn was heading into surgery to be placed on a VAD. For half a year, Jimmie and his wife, Kristyn, waited by the phone for the transplant call. The family had many long nights, learned how to navigate their lives with a VAD, and finally reached the end of a dark tunnel.

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