Muscular Dystrophy

Defying the Odds: Riley’s Life with Duchenne

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.”

The Pulse — October 2023

Happy Fall to All!
We had a successful meeting in St. Louis during the International HF/VAD Summit, and it was great to see so many of you in person! We brainstormed new ideas for QI/Research projects, clinical trials, education projects, advocacy efforts, and ways to improve data collection and project participation. We also played ACTION Trivia — did you know ACTION now has 66 sites in North America and has 27 manuscripts published since 2019? We are starting to plan for our next in-person meeting, which will be at CHOP in February 2024. Details to follow soon…

Initial multicenter experience with ventricular assist devices in children and young adults with muscular dystrophy: An ACTION registry analysis

Purpose Cardiac disease results in significant morbidity and mortality in patients with muscular dystrophy (MD). Single centers have reported their ventricular assist device (VAD) experience in specific MDs and in …

Initial multicenter experience with ventricular assist devices in children and young adults with muscular dystrophy: An ACTION registry analysis Read More »

Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION

The results of an ACTION-wide survey of pediatric cardiology providers are detailed in the latest ACTION publication, Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): …

Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION Read More »

Muscular Dystrophy

Patients with Muscular Dystrophy (MD) have weakened muscles; this also includes their heart muscle. These patients may develop signs and symptoms of heart failure and may need treatment such as cardiac medicines, mechanical devices, or advanced treatments.