An expert opinion statement, addressing a critical gap in cardiac care for Duchenne muscular dystrophy – providing thorough recommendations for the initiation and titration of cardiac medications based on disease progression and patient response.
Let’s make 2025 our best year yet! We wrapped 2024 with the exciting announcement for the FDA expanded label of Johnson & Johnson MedTech’s Impella Support System to include treatment for certain children suffering from heart failure. Achievements like this would not be possible without the continued efforts and dedication of our ACTION centers providing care to these patients, as well as entering, cleaning, and adjudicating the data. We also continued access to the Berlin Heart Active Driver under the extended trial, and we published many new ACTION manuscripts.
The Pulse — February 2024 Read More »
Partnership of cardiologists with gene transfer therapy prescribers is essential to identifing patient-specific considerations that might influence risk for adverse cardiac events.
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 »
Dear Community, We hope you are enjoying your summer vacations and finding time to rest and rejuvenate with your families! ACTION has been busy with new publications, tools, and resources. Special thanks to the Muscular Dystrophy & Heart Failure committees for new harmonization protocols, and to the Fontan Referral Improvement Project leadership & committee for launching the Provider Grand Rounds deck for Advanced Therapeutic Options for Fontan Patients!
The Pulse — July 2024 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 »
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