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Representative Frank Pallone have recently introduced the Cardiomyopathy Health Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act to increase awareness of cardiomyopathy and the risk of sudden cardiac arrest (SCA) among parents, schools and health professionals.
The Children’s Cardiomyopathy Foundation (CCF) worked in partnership with Congressman Pallone on every component of this legislation.
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 cardiomyopathy — a chronic heart disease where the heart becomes abnormally enlarged, thickened or stiffened.
It is a leading cause of sudden cardiac arrest in children and young adults. Determined to not have another family endure the grief she suffered, she formed CCF, which is dedicated to research, education and awareness of all forms of cardiomyopathy in children.
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 hope is that more individuals with cardiomyopathy will be diagnosed and appropriately treated before they fall victim to sudden cardiac death.
An estimated 30,000 children in the United States are living with this chronic heart condition, yet few people are aware of this potentially life-threatening disease. ”Cardiomyopathy is difficult to detect without symptoms and the consequences can be devastating for those not diagnosed,” commented Lisa Yue, president and founder of CCF.
“By providing educational materials on cardiomyopathy to families and schools, this legislation has the potential to save the lives of many children at risk of sudden cardiac death.” ”CCF has done an excellent job raising awareness about sudden cardiac arrest in children and I’m grateful for all the work the organization has done,” said Pallone.
“We cannot save lives without raising awareness about SCA and the HEARTS Act will accomplish that. By devoting more resources to educating teachers and child care workers lives will be saved.” ”We worked hard on the HEARTS Act with Representative Pallone, and I am so happy to see it introduced,” said Lisa Yue.
“Our next step is to work hand-in-hand with Congressman Pallone and our CCF families to garner the support needed to get this bill passed.”