What: Poster Session When: Friday, October 11 from 2:15-3:15 pm Dystrophinopathy in ACTION; Analysis of the first 500 males enrolled in the Advanced Cardiac Therapies Improving Outcomes Network prospective […]
29th Annual Congress of World Muscle Society- ACTION Abstracts Poster Session Read More »
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.”
Defying the Odds: Riley’s Life with Duchenne Read More »
Ricky was diagnosed with Duchenne Muscular Dystrophy (DMD) within the first year of his life. With the unyielding support of his mother, Rosie, he has defied the odds of a complex disease. From diagnosis to treatment, and now recovery, Ricky goes everywhere, experiencing life to the fullest.
Care Across State Lines: Ricky’s Journey to Life-Saving Surgery Read More »
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…
The Pulse — October 2023 Read More »
We’re excited to introduce these valuable tools and resources, designed to empower and inform those navigating the challenges of Muscular Dystrophy. Stay tuned to see how ACTION is working to
Muscular Dystrophy Resource Tools Read More »
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
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):
ACTION receives $2 million grant from Parent Project Muscular Dystrophy (PPMD) to expand muscular dystrophy focused research and quality improvement initiatives
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.
Muscular Dystrophy Read More »
