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July 2022
Dear Community, It has been a few months since our last newsletter. We are trying a new communication method: a “Forecast” email goes out every two weeks with important dates, meetings and resources; and newsletter, which now include data visualizations, will be distributed quarterly. It was great to see many of you at ISHLT this past April! We are planning the Fall and Spring ACTION meetings (look for details in upcoming Forecast emails). In other exciting news, we recently launched our updated website! Same URL with lots of great new content. We also have a new educational series kicking off in August called “In Real Life (IRL)” (registration details below). Heart failure projects are also rolling out this month to pilot sites, with a network-wide launch planned for September 2022. As always, thank you for your continued efforts! Regards, 
PATIENT FAMILY STORY A New Heart, A New Community: Raylan’s Story
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. A big thank you to Bonnie, Craig and Raylan for sharing their story in an effort to promote advocacy, support, and awareness! If you have a story to share, please contact us! Check it out!
Check out ACTION’s new website!Same URL, but now with a complete redesign and lots of great content to explore and share.New features include:
Help us celebrate the launch of this new website by sharing actionlearningnetwork.org on your social media platforms. 
ACTION receives $2 million grant from Parent Project Muscular Dystrophy (PPMD)Have you heard?? ACTION received a $2 million grant from Parent Project Muscular Dystrophy (PPMD) to expand muscular dystrophy focused research and quality improvement initiatives The funding will provide our clinicians, researchers, parents, and patients the resources to study and understand cardiac disease and outcomes in all dystrophinopathies. The gift will allow the expansion of our DMD committee’s initiatives including:
In addition to the data collection and quality improvement initiatives, My ACTION Education, will be expanded to include muscular dystrophy related materials for patients, caregivers, and providers. 
Improving Mobility for Patients on the Berlin Heart EXCOR®Congratulations to Beth Hawkins, RN, MSN, FNP-C and her team at Boston Children's Hospital for developing an IV pole prototype to improve mobility in patients on a Berlin Heart EXCOR® IKUS Driving Unit. They are working to survey nurses/PT/OT and families on how it has impacted their patient’s quality of life and ease of use. 
Calling All New Fellows!The Fellows Stakeholder Group (headed up by Joey Spinner & Anna Joong) was started to engage 4th year HF/VAD/Transplant Fellows with ACTION. Activities have included: interesting case discussions, multiple journal clubs, and webinars featuring Berlin Heart, HeartMate 3TM, and Impella. This year the group will also complete a project that will (hopefully) result in a publication. We are reaching out to request that you share with us the contact information for your incoming 4th year fellow(s) for next year—and any internal categorical fellows whom you think will be pursuing a future career in HF/VAD/Transplant. We would like to get them on-boarded to ACTION now so we can start planning our activities for the beginning of the next academic year. Please email Joey Spinner or Nikita D'Souza with names and email address. 
Featured Resources!
Check out the revised Harmonized Protocols & Guidelines, now with new Fontan and Muscular Dystrophy sections. 
Check out our Harmonized Protocol on Evaluation and Management of Protein Losing Enteropathy in Fontan Patients To download all individual protocols, login to MyACTIONEducation.org and navigate to ACTION Library > 2. Resources > Protocols 
Congratulations!If you know someone that deserves a little recognition, please send us details! The chosen ACTION Members of the Month receive a special ACTION swag item — and nominators will be entered into a quarterly raffle for a special prize! 
Quality Improvement UpdatesAggregate network stroke data, updated July 2022. We sustained our initial efforts, see graphs below. New interventions coming soon. 
Percent of patients who had a stroke with all devices (by first implant date) 
Percent of patients who had a stroke with intracorporeal continuous flow device (by first implant date) 
Percent of patients who had a stroke with paracorporeal continuous flow device (by first implant date) 
Percent of patients who had a stroke with paracorporeal pulsatile flow devices (by first implant date) 
22 HeartMate 3TM and Berlin Heart patients have been entered in the De-Escalation Project. 8 of the 22 patients achieved de-escalation before either 1. activation for transplant, 2. completing hospital course to discharge, or 3. receiving their transplant. Achieving de-escalation means the patient was extubated, off inotropes, ambulating or age equivalent, and stated feeds. This project is designed to encourage patient stability prior to transplant. It is also an effort to encourage discharge of patients on HeartMate 3TM. 47 patients and parents told us how they’re feeling post-VAD implant. 
Registry Database UpdatesSimplified Clinical data as of 7/4/22 Total # VAD Patients Enrolled 933 DMD Initial Enrollment: 106 6-mo follow-up completed: 21 CardioMEMs Initial Enrollment: 7 30-day follow-up completed: 4 6-mo follow-up completed: 0 Fontan Initial Enrollment: 86 30-day follow-up completed: 76 Open Positions in ACTION Centers
Levine Children’s Hospital |
The Pulse — April 2025
April 25, 2025
