Advocacy is an integral part of CCF’s mission. Many policymakers are not familiar with cardiomyopathy because it is a rare disease in children. Increased public education and federal research funding is critical. CCF recognizes the importance of the patient voice and the need to advocate for broader public policies public initiatives that will increase research, education, and access to specialized care. CCF works with key legislators to ensure that the concerns and needs of children with cardiomyopathy and their families are heard at the federal, state, and community level.

Legislative Priorities

CCF works with key legislators at the federal and state level to ensure that raise awareness of the concerns and needs pediatric cardiomyopathy and ensure that policies are in place to improve health outcomes for children with cardiomyopathy and to prevent premature deaths from sudden cardiac arrest.

CCF’s advocacy work focuses on focuses on:

  • Expanding funding for pediatric cardiomyopathy research
  • Promoting awareness of the signs and symptoms of cardiomyopathy
  • Identifying and diagnosing at-risk children with cardiomyopathy
  • Providing better access to specialized medical care

Over the years, CCF has been actively involved in the appropriations process and supporting legislation associated with cardiomyopathy, including the Cardiomyopathy HEARTS Act

Cardiomyopathy HEARTS Act

The Cardiomyopathy Health, Education, Awareness, Risk Assessment, and Training in the Schools (HEARTS) Act was first introduced by Rep. Frank Pallone (NJ-06). In December 2023, the Act (H.R. 6829) was reintroduced by Reps. Frank Pallone (NJ-06) and Andy Kim (NJ-03).

The legislation requires the Secretary of Health and Human Services (HHS) to coordinate with the Centers for Disease Control and Prevention (CDC), as well as patient advocacy and health professional organizations, to develop educational materials and resources on cardiomyopathy for public awareness and distribute materials to schools, teachers, and parents. This would include an improved risk assessment for cardiomyopathy.

The bill calls for guidelines regarding the placement of lifesaving automated external defibrillators in schools and also encourages the National Institutes of Health (NIH) to expand, intensify, and coordinate research on cardiomyopathy.

CCF also works with the National Heart, Lung, and Blood Institute, Centers for Disease Control and Prevention, and the Department of Defense Congressional Research Program so that pediatric cardiomyopathy receives appropriate funding in research and education.

Ways to Advocate

Whether you areAs a parent, patient, family member, friend, or person living with cardiomyopathy or medical provider, CCF encourages you to become an advocate for pediatric cardiomyopathy. Congressional members want to hear from their constituents on issues that matter to them. or bills that matter to you. As more people speak out, policymakers are more prone to take action. There are different ways to contact members of Congress:

  • Send an email or letter
  • Call your legislator
  • Schedule a meeting

Key Messages

The most effective way to advocate is to share your personal story and communicate what action is needed. Your outreach efforts may motivate legislators to reshape their health policy agenda to focus more on pediatric cardiomyopathy. When contacting your legislator, key messages to convey are:

  • Pediatric cardiomyopathy is a serious heart condition with unmet medical needs.
  • It is a chronic and potentially life-threatening disease that can affect any child regardless of age, gender, or race.
  • Cardiomyopathy can be debilitating and is a common cause of heart failure and heart transplantation in children.
  • Cardiomyopathy in children is not well understood in its causes and disease progression.

CCF’s Advocacy Resource Page provides the necessary information and materials to contact your elected leaders.