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Peak hydration achieved! Taking ACTION to every altitude.
Happy Fall to All!We have many exciting updates to share, including new tools and publications, the launch of our revitalized VADs In Real Life (IRL) education series, an important announcement regarding Department of Defense (DoD) funding for our Muscular Dystrophy Registry and Committee, and a warm welcome to our newest operations team member. As we reflect on the past quarter, we are reminded of how grateful we are for the engagement, partnership, and collaboration of our members and stakeholders. Your continued dedication helps advance our collective
efforts in research, quality improvement, education, and advocacy. We sincerely thank you for your ongoing support and contributions, which continue to drive meaningful impact across our community. Thank you for your continued efforts!
ACTION Executive Leadership
ACTION receives $910,000 Department of Defense award to study the evolving impact of therapies on heart disease in Duchenne muscular dystrophy.
See full article... The award will support the project, Defining the Contemporary Natural History and Therapeutics Impact on Cardiomyopathy in Duchenne Muscular Dystrophy, led by Chet Villa, MD, at Cincinnati Children’s Hospital Medical Center in collaboration with Emily Hayes, MD, at Nationwide Children’s Hospital.
ACTION @ 2026 AHA Scientific SessionsSupport Aine Lynch, et al. in Chicago, IL
Sunday, November 8 from 11:30 AM – 12:30 PM CT
The Wait is Not a Pause: Helping Children Thrive While Awaiting TransplantThursday, October 15, 2026
4:00–5:00 PM ETThis multidisciplinary session will highlight the patient and family experience alongside medical and rehabilitation perspectives, focusing on how we can help children maintain development, connection, and quality of life while in
the hospital. All are welcome!
Please share with your patients, fellows, bedside staff, multidisciplinary teams, and others!
UPCOMING SESSIONS - Session 1: The Wait Is Not a Pause: Helping Children Thrive While Awaiting Transplant REGISTER NOW!
- Session 2: Building the Team. Care Models, Staffing, and
Sustainability Across ACTION Centers.
- Session 3: VAD Experiences Across All CHD Stages.
- Session 4: Centrimag & Pedimag as Long-Term Support. Experience from a High-Volume Single Center.
- Session 5: The Balancing Act: Post-Stroke Anticoagulation Management and the Road to Recovery
- Session 6: Pump Malfunction & Cannula Management
This summer, the Women in ACTION group hosted two sessions with Alyssa Burgart, MD, MA, Clinical Professor of Anesthesiology, Perioperative & Pain Medicine at Stanford University School of Medicine. Through her Moral Support: Your Values and Moral Agency series, participants explored moral distress, moral injury, moral courage, and the role that personal and professional values play in caring for patients with complex needs. If you would like to receive updates about future Women in ACTION programs and events, please complete our brief survey below.
NEW! Harmonized Protocols
RASopathy Protocols (NEW!)
Trametinib for Management of Hypertrophic Cardiomyopathy Secondary to RASopathy
NEW! ACTION Project PageCardiac Care for Pediatric Oncology Patients
The ACT-ONC committee now has a new home on actionlearningnetwork.org, where its work and resources will live as they develop. Two are available today: Cardiotoxicity & Cancer, created with the International Cardio-Oncology Society, is a plain-language sheet for patients and families on how cancer treatments can affect the heart and how heart health is monitored. Referral Guidance for Pediatric Oncology Providers helps clinicians decide when to bring cardiology into the conversation, with an editable version sites can adapt to local practice.
Meet our Newest ACTION Team Member!
Megan joins ACTION as a Program Manager on October 5th.Why did you want to join ACTION?
I wanted to join ACTION because I was drawn to their mission and dedication to patients. I’m looking forward to the opportunity to contribute to such impactful work while continuing to grow my own skills and knowledge. What’s your favorite part about ACTION?
My favorite part of ACTION is the passion everyone brings to their work. Everyone is extremely welcoming and excited about what they are doing. I’m looking forward to learning more about how we can improve outcomes together! What are some things that you enjoy doing outside of work?
I enjoy seeing new movies and listening to music. I have two cats that I love to spend time with. I am always hanging out with my fiancée, family, and friends on the weekends!
Congratulations Kerry & Jon!
Get to know Kerry Schindler, MSN, RN, CCRN, CNE, VAD-C the VAD Coordinator at New York-Presbyterian Morgan Stanley Children’s Hospital / Columbia in New York, NY.Find out which ACTION initiative Kerry is most excited about, and which famous arena she once performed in as a competitive Irish dancer!
Get to know Jon Edelson, MD the Medical Director of the Heart Transplant and Ventricular Assist Device Programs at Children's Hospital Philadelphia in Philadelphia, PA.Find out which ACTION trial Jon is most excited about, and which island has been part of nearly every chapter of their life for 40 years!
If you know someone that deserves a little recognition, please send us details! Chosen members will receive a special ACTION swag item!
Registry Database Updates
Simplified Clinical data as of September 1, 2026
Total # Patients Enrolled:
1,310 Admission/Recently Discharged: 864
SGLT2: 690
CardioMEMS: 87
Wearables: 27
If you need access to enter data, or have any questions please email us.
Open Positions in ACTION Centers
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