Cardiomyopathy in children is not well understood, and the complex challenges faced by families and physicians have not been completely met. Policy makers will have a better understanding of key issues related to pediatric cardiomyopathy when affected individuals and family members share their experiences. By starting a discussion, critical issues can be recognized and addressed.

Ways to Advocate

Congressional members want to hear from their constituents, especially on issues of importance to them. It is easy to contact your elected officials, and it can be done in three ways.

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

Becoming an Advocate

Sharing your family’s experience helps legislators understand the personal impact of cardiomyopathy. It also ensures that cardiomyopathy-related policies and programs are supported and implemented. When you contact your legislator, key messages to convey are:

  • Cardiomyopathy is a chronic and potentially life-threatening heart disease that affects children regardless of age, gender, or race.
  • It is not a well understood disease given its multiple causes and variability.
  • Increased research on children is needed to improve health outcomes and to find cures. 

CCF can provide you with guidance and the necessary materials for contacting key decision makers. CCF's Advocacy Training and Tools page provides useful resources to contact your legislators including an sample letter that you can personalize and send by email. CCF can assist with follow up after your initial contact with a member of Congress.