Children's Cardiomyopathy Foundation



Cardiomyopathy can be a silent killer. It can be difficult to detect, with sudden cardiac arrest as the first symptom in some cases. All too often, we hear of a young student who, without warning, collapses on the football field or even on line at the cafeteria. The Children’s Cardiomyopathy Foundation (CCF) wants to make sure this doesn’t happen again — that we don’t lose another child to sudden cardiac death.

Getting children with cardiomyopathy identified, properly diagnosed and appropriately treated remains a top priority for CCF. It is for this reason that we have taken a leadership position in working with our Washington leaders to introduce the Cardiomyopathy Health Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act. This is the first bill to be introduced on cardiomyopathy, and it focuses on increasing awareness of cardiomyopathy and the risk of sudden cardiac arrest (SCA) among parents, schools and health professionals. Read CCF’s press releases on the HEARTS bill introduction.

Bill Summary

The 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 for public awareness — regarding the symptoms of cardiomyopathy, risk assessment, training in lifesaving procedures, and development and implementation of 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 encourage families to evaluate their family’s cardiac history, check for cardiomyopathy symptoms and seek medical screening if necessary. The bill has now been introduced into both the U.S. House of Representatives and the U.S. Senate.

House HEARTS Bill

Senate HEARTS Bill

Moving the Legislation Forward

Cardiomyopathy touches far too many children and families in this country to be ignored. It is time for lawmakers to put cardiomyopathy and the Cardiomyopathy HEARTS bill on the top of their public policy agenda. CCF is currently making the rounds on Capital Hill to get more legislative co-sponsors so that a hearing can be scheduled with the Energy and Commerce Subcommittee in the U.S. House and with the Health, Education, Labor, and Pensions Health Subcommittee in the U.S. Senate.

Help get the Cardiomyopathy HEARTS Act passed into law by contacting your members of Congress and let them know how important this bill is to you.