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HEART TO HEART
News from the Children's Cardiomyopathy Foundation - September 2017
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Children's Cardiomyopathy Awareness Month Initiates
Heart-Healthy Conversations
Eleven national organizations join CCF this September in raising awareness of pediatric cardiomyopathy. The month-long initiative features 30 days of educational activities to increase awareness of the signs, symptoms, and risk factors for cardiomyopathy. A highlight of the month's activities is a webinar with r
enowned cardiomyopathy specialist
Jeffrey Towbin, M.D. of
Le Bonheur Children's Hospital. It will be held
on September 21 at 6 p.m. EST.
Cardiomyopathy is a leading cause of sudden cardiac arrest (SCA) in the young, and often those undiagnosed and unaware of a family history of heart disease are at a higher risk for SCA. During Awareness Month, families are encouraged to start a conversation about their cardiac health history.
Awareness month partners include the American Academy of Pediatrics, American Heart Association, Centers for Disease Control and Prevention, Eric Paredes Save a Life, National Alliance of Youth Sports, National Association of School Nurses, National Athletic Trainers' Association, National Organization for Rare Disorders, Parent Heart Watch, Sarcomeric Human Cardiomyopathy Registry (ShaRe), and Sudden Cardiac Arrest Foundation. Partners will highlight Awareness Month on their blogs, newsletters, and social media sites.
To commemorate Awareness Month, the Third Annual Walk for a Cure will be held on September 17 in West Orange, N.J. Hometown walks are also scheduled across the country in Pennsylvania, Florida, Virginia, Delaware, and Michigan.
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CCF-Funded Studies to be Featured at AHA Scientific Sessions
The National Heart, Lung, and Blood Institute (NHLBI) and Children's Cardiomyopathy Foundation (CCF)-funded Pediatric Cardiomyopathy Registry (PCMR) will present four research abstracts at the American Heart Association (AHA) Scientific Sessions. The Scientific Sessions, to be held in Anaheim, Calif. on November 11-15, is the top cardiovascular meeting for basic, translational, clinical, and population science. The AHA receives more than 10,000 abstracts every year and only accepts 30% for presentation. The abstracts featured at the poster sessions include: "Cardiac biomarkers are associated with death and listing for heart transplantation in pediatric patients with newly diagnosed dilated cardiomyopathy: A multi-center study from the pediatric cardiomyopathy registry;" "Are echocardiogram and magnetic resonance imaging comparable in measuring maximal septal thickness in children with hypertrophic cardiomyopathy?;" "Fibrosis and hypertrophy assessed by magnetic resonance imaging and serum biomarkers in pediatric hypertrophic cardiomyopathy: A report from the pediatric cardiomyopathy registry group;" and "Exome sequencing in a pediatric cardiomyopathy cohort: Findings from the pediatric cardiomyopathy registry." Since 2003, CCF has taken an active role in supporting PCMR's multi-center studies and have funded several working groups and ancillary studies.
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Publications from CCF's 4th International Scientific Conference
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