Twelve n ational or ganizations are joinin g CCF this September in raising awarene ss of pediatric cardiomyopa thy. The Children's Cardiomyopathy Awareness Month was launched last year to educate the public about the signs, symptoms and risk factors for cardiomyopathy and to encourage families to learn about their cardiac health history.

 

New findings from CCF-funded Pediatric Cardiomyopathy Registry studies have been published in two peer-reviewed cardiology journals. "Cardiomyopathy Phenotypes and Outcomes for Children with Left Ventricular Myocardial Non-Compaction: Results from the Pediatric Cardiomyopathy Registry" and "Prevalence, Predictors, and Outcomes of Cardiorenal Syndrome in Children with Dilated Cardiomyopathy" were published in the July issues of the Journal of Cardiac Failure and Pediatric Nephrology respectively.

 

The first study reviewed clinical data from children with left ventricular non-compaction cardiomyopathy to determine the risk of death and transplant among different phenotypic groups. The results will help guide treatment plans and inform cardiologists on when patients should be listed for transplantation based on certain clinical indicators.

 

The second study looked at the risk factors for cardiorenal syndrome in children diagnosed with dilated cardiomyopathy (DCM). The study found that children with DCM, especially those with impaired left ventricular function, should be monitored for renal disease. This sub-group also may be associated with higher mortality. 

CCF partnered with Senator Robert Menendez to include cardiomyopathy specific language in the Every Child Achieves Act of 2015 (S. 1177). The bill, which passed the Senate in July, is a bipartisan educational policy reform bill that would replace the No Child Left Behind Act of 2001. The bill would end the federal government's mandate on national school standards and let states develop their own accountability systems.

If passed into law, the bill would allow states to use federal funds for a series of activities that include disseminating materials on cardiac conditions such as cardiomyopathy and developing emergency action plans for student athletes. 

 

The language secured in the bill complements the Supporting Athletes, Families, and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act, which CCF helped reintroduce in the House and Senate earlier this year. The SAFE PLAY Act includes provisions to protect student athletes from sudden cardiac arrest which can occur with children at-risk of cardiomyopathy.

CCF is sponsoring a second family conference with the Sarcomeric Human Cardiomyopathy Registry (SHaRe) in Ann Arbor, Mich. Affairs of the Heart: Living with Genetic Cardiomyopathy will take place October 3 and is offered free of charge to patients and families. CCF sponsored the first SHaRe family conference in November 2014 at Brigham & Women's Hospital in Boston, Mass.