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PPMD has an ongoing commitment to cardiac care, because the heart is a muscle too.
Heart issues don't just affect some people with Duchenne; they affect ALL people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and heart failure remain the leading cause of death in Duchenne.
Just as there are variations in onset of skeletal muscle difficulties, there are variations in the onset of cardiac muscle difficulties. Eventually, nearly 100% of all people with Duchenne develop dilated cardiomyopathy and heart failure. Cardiomyopathy is also a potential risk for mothers and daughters who are carriers.
For the past several years, PPMD has heavily invested in the pursuit of optimal care, interventions, and research pertaining to the management and prevention of cardiomyopathy. In 2011, PPMD funded close to $2 million toward toward developing a comprehensive Cardiac Initiative.
We have learned so much, but
there is still a tremendous amount to do to understand and improve heart health
in people with Duchenne. For this reason, PPMD is committing an additional $1
million to bring together experts to understand cardiac needs and
opportunities; further our exploration of novel cardiac treatments; and understand
more about device and transplant interventions.
Our RACE to Heart Health in Duchenne
Cardiac research has received a significant amount of funding over the past several years. Below is a list of past cardiac grants PPMD has funded, as well as current and new initiatives we are supporting in Identifying New Cardiac Drugs and Repurposing Existing Drugs to Treat Cardiomyopathy categories.
As you are probably aware, the MD-CARE Act is up for reauthorization this year (2013). One amendment focuses on enhancing the care of adults living with Duchenne and Becker muscular dystrophy. As cardiac issues become more important as individuals age, cardiac care of adults with Duchenne and Becker is a primary focus of this amendment. ($130,000 over 2 years)
At the Transforming Duchenne Care Meeting (June 2012), five areas of subspecialty care were identified for the provision of optimal care, including cardiac care. As a next step in the Transforming Duchenne Care Initiative, we will identify treatments and procedures that demonstrate that cardiac care is being provided in agreement with the Care Considerations. We are committed to providing the community with more information about the level of cardiac (and other) care provided at clinics and medical centers across the United States. (60,000)
In 2010, PPMD’s Cardiac Care workshop addressed cardiac surveillance and care of individuals living with Duchenne, throughout their lives. These findings were incorporated into the development of the Care Considerations, made possible by the MD-CARE Act. These care guidelines are a major resource for medical providers caring for patients with Duchenne around the world. (40,000)
In order to address current standards of care, as well as novel approaches to cardiac health and maintenance, PPMD recently presented four cardiac webinars in 2012 – 2013. These webinars addressed: