Parent Project Muscular Dystrophy Awards $2 Million to ACTION Network to Revolutionize Duchenne Cardiac Care
Summary
As part of PPMDs ongoing Cardiac Initiative, the grant will prioritize optimizing care and improving outcomes for those living with Duchenne-related cardiomyopathy and support the critical expansion of ACTIONs efforts to create the largest multicenter database on Duchenne cardiac care practices and outcomes to date.Duchenne is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in 5,000 live male births. The award to ACTION comes on the heels of the organizations first-ever Duchenne Cardiac Care Meeting in March 2022, which brought together more than 80 cardiologists and key neuromuscular providers, as well as members from the National Institutes of Health (NIH), U.S. Food and Drug Administration (FDA), and scientific and industry partners.Led by Drs. This award to support the expansion of ACTIONs Duchenne Muscular Dystrophy (DMD) project to the broader ACTION Muscular Dystrophy initiative marks a pivotal step in responding to this need.PPMDs Founding President and CEO, Pat Furlong, announced the award during her opening address at PPMDs 2022 Annual Conference, taking place June 23-26 in Scottsdale, Arizona. The database will facilitate a data-driven approach to consistent patient/provider education, best practices, and future clinical trial design needed to move the field forward and change lives.To learn more about PPMDs Cardiac Initiative, .is a fatal genetic disorder that slowly robs people of their muscle strength. fights every single battle necessary to end Duchenne.We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support.