ADVOCACY TRAINING AND TOOLS

Through your actions, you have the ability to influence policy on pediatric cardiomyopathy. CCF is here to assist you in ensuring that your voice is heard at the local and national levels. Whether you call, write, or personally meet with your members of Congress – or just want to learn more about the legislative process – all the information and tools you need to get started are included in this section.

Becoming an Advocate

Becoming an advocate means making your needs and CCF’s message known to policymakers to ensure that cardiomyopathy-related policies and programs will be supported and implemented. The key message to communicate is that pediatric cardiomyopathy is a serious disease that impacts thousands, and it deserves more attention and research funding to find cures in our lifetime. CCF can provide you with the necessary materials and guidelines to contact key decision makers.

Advocacy Resources

Effective advocacy begins with understanding how the system works. CCF has developed an easy reference health policy tool kit and compiled a list of common advocacy terms to provide background information on the legislative process.

Finding Your Legislator

To determine who represents you in Congress, visit the below sites and click on “Find Your Representative” or “Find Your Senators.”

Communicating with Legislators

The focus of your communication should be on your personal experience with cardiomyopathy. Your story has the greatest impact on an elected official, and it is what will motivate them to take action.

These quick reference documents will assist you in communicating effectively with your legislators. It is always good practice to send a thank you letter after your meeting or their email response.