Children's Cardiomyopathy Foundation Endorses Reintroduction of Lifesaving Legislation For Students

Feb 07, 2013, 13:44 ET from Children's Cardiomyopathy Foundation

TENAFLY, N.J., Feb. 7, 2013 /PRNewswire-USNewswire/ -- Today, U.S. Senators Robert Menendez and Frank Lautenberg and Representative Frank Pallone reintroduced the Cardiomyopathy Health Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act, legislation to increase awareness among parents, schools and health professionals of pediatric cardiomyopathy and the risk of sudden cardiac arrest (SCA) that many children face. The Children's Cardiomyopathy Foundation (CCF) continues to work in partnership with Congressman Pallone and Senators Menendez and Lautenberg to move this legislation forward.

Cardiomyopathy is an incurable and chronic heart disease where the heart becomes abnormally enlarged, thickened or stiffened. It is a leading cause of SCA in children and young adults. Getting more children with cardiomyopathy properly diagnosed and treated is a priority for CCF, a national organization founded by Lisa Yue, a mother who lost two sons to the disease. CCF is dedicated to cardiomyopathy research, education and awareness, and support for affected families. 

"We are grateful that Sens. Menendez and Lautenberg and Rep. Pallone have decided to reintroduce this important legislation, which provides so many with lifesaving benefits," said Lisa Yue, president and founder of CCF. "We appreciate their steadfast commitment to this cause and give them our full support."

An estimated 30,000 children in the United States are living with some form of cardiomyopathy, yet few people are aware of this potentially life-threatening disease. Because the disease can be present without obvious symptoms, not all children are being properly diagnosed. "It's been said that for every child that is diagnosed, there is most likely another child unknowingly at risk of sudden cardiac death," said Lisa Yue. "By providing educational materials on cardiomyopathy to families and schools, this legislation can raise awareness of the warning signs and help to identify those prone to fatal arrhythmias."

"Cardiomyopathy is a devastating disease, and we must do our part to protect those children susceptible to sudden cardiac arrest," said Menendez. "I will continue to advocate for this legislation to raise awareness about this potentially life-threatening heart condition that claims the lives of so many young children."

The Cardiomyopathy HEARTS Act would require the Secretary of Health and Human Services to coordinate with the Centers for Disease Control (CDC) and national patient advocacy and health professional organizations to develop educational materials and resources on cardiomyopathy for public awareness — covering symptoms, risk assessment, training in lifesaving procedures, and developing and implementing a cardiac emergency response plan — and disseminate them to schools and families as well as post them on the CDC website. The HEARTS Act will encourage schools to be aware of and prepared for a cardiac emergency, and also will prompt families to evaluate their cardiac history, check for cardiomyopathy symptoms and seek medical screening if necessary.  

"Sudden Cardiac Arrest is a silent killer, striking 7,000 children a year. This legislation will help raise awareness about its causes and hopefully prevent these tragic deaths," said Rep. Pallone. "I'm proud to reintroduce the HEARTS Act to hopefully bring light to SCA in the place children most often are — school."

About The Children's Cardiomyopathy Foundation
The Children's Cardiomyopathy Foundation (CCF) is a national non-profit organization dedicated to finding causes and cures for pediatric cardiomyopathy.  CCF started in 2002 with one family's determination to call attention to this poorly understood heart disease and to take action on the lack of medical progress and public awareness.  Since then, CCF has committed more than $1.8 million to research and treatment initiatives, and grown into a global community of families, physicians and scientists focused on improving diagnosis, treatment and quality of life for children with cardiomyopathy.

SOURCE Children's Cardiomyopathy Foundation