Press Release


Children's Cardiomyopathy Foundation Supports Congressman Pallone's Legislation to Expand Research and Education on Children’s Heart Disease


Tenafly, NJ — Oct. 5, 2017 — The Children's Cardiomyopathy Foundation (CCF) actively supports Representative Frank Pallone's (NJ-06) legislation that raises awareness of cardiomyopathy — a chronic disease of the heart muscle that may lead to heart failure and sudden cardiac death. The Cardiomyopathy Health Education, Awareness, Research, and Training in the Schools (HEARTS) Act of 2017 will assess the research needs of cardiomyopathy across the lifespan, establish cardiomyopathy surveillance research, and create educational resources to disseminate to school administrators, educators, and families.

Cardiomyopathy can present differently in individuals, and it can be difficult to detect when there are no obvious symptoms. For those not diagnosed, the consequences can be devastating. Studies have shown that cardiomyopathy is a leading cause of sudden cardiac arrest, which is the number one cause of death on school property. Despite the severity of the disease, little is known about the prevalence, causes, and reasons for its variability.

Working with federal agencies to allocate more resources to cardiomyopathy has always been a priority for CCF, a national organization founded by a mother who lost two children to cardiomyopathy. In the past, CCF worked with Rep. Pallone, Senator Robert Menendez, and other congressional leaders to introduce legislation that would improve quality of life and care for those with cardiomyopathy. "In 2011, we worked with Rep. Pallone to introduce the first-ever cardiomyopathy bill. We are honored to work with him again on this more comprehensive bill," commented Lisa Yue, CCF's founding executive director. "This bill is important in that it will improve our understanding of cardiomyopathy from birth to adulthood and help identify more families at-risk of sudden cardiac arrest."

The HEARTS Act will evaluate current cardiomyopathy research initiatives funded by the National Institutes of Health (NIH) and request the Centers for Disease Control and Prevention (CDC) to collect and analyze data to identify the impact, prevalence, and natural history of cardiomyopathy. The bill also will encourage the CDC to implement an education and awareness campaign that includes developing educational materials and resources on the symptoms of cardiomyopathy, SCA risk factors, automated external defibrillator (AED) placement and CPR/AED training in schools, and implementing a cardiac emergency response plan. These materials will be disseminated to school administrators, educators, school health professionals, coaches, and families through state educational agencies, health departments, hospitals and other medical or health professionals. The hope is that these measures will positively impact disease management and save more lives through earlier diagnosis and appropriate treatment.

"CCF has done an excellent job of raising awareness," said Pallone. "We know that we can't improve what we can't measure, and we can't save more lives without devoting more resources to this issue. The HEARTS Act will address this public health concern by improving surveillance, research, and education on cardiomyopathy and sudden cardiac death."

"Our next step is to work with Congressman Pallone and our families through the U.S. to garner the necessary support to get this bill passed," added Lisa Yue.

About the Children's Cardiomyopathy Foundation

The Children's Cardiomyopathy Foundation (CCF) is a national organization focused on finding causes and cures for all forms of pediatric cardiomyopathy, the leading cause of heart transplants and sudden cardiac arrest in children. 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 grown into a global community of families, physicians and scientists and has raised more than $8 million for research and education initiatives, family support, and advocacy and awareness measures.

Media Contact:

Sheila Gibbons: 866-808-2873 x902; sgibbons@childrenscardiomyopathy.org

 

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