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A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Take Action Now

As the voice of congenital heart disease, we have a lot of work to do to make ourselves heard!

Invite your Representative to join the Congenital Heart Caucus

There has been a lot of talk about a Congressional Congenital Heart Caucus in the advocacy world. Caught wind of it yet? Listen up – it’s important! We need you to motivate your Representative to listen up, too, and join the Caucus.

In February of 2012, Congressman Gus Bilirakis introduced the Congressional Congenital Heart Caucus as a tool to communicate with members of the House of Representatives about the important issue of congenital heart disease.

Here are a few frequently asked questions:

What is a caucus?

A caucus is a group of members of the House of Representatives who share some commonality. Members form caucuses to organize themselves, to build social ties, to disseminate information, and/or to coordinate and promote legislative agendas.

Why is it important?

A caucus is an important vehicle for disseminating information about congenital heart disease. Whether it is through email or a briefing, the caucus can share information with its members about research advances, updates on federal agency activities related to CHD, and key legislation that may impact people with CHD. It can also serve as an awareness tool, not only for our Members of Congress, but as they pass this vital information to their constituents. While a caucus is an organization for Members of Congress, it is also an indicator of the strength of coalitions for the public at large. It’s another symbol that we are being heard in Washington.

Who runs the Congenital Heart Caucus?

Currently, Congressman Bilirakis is the Chair of the Caucus. In turn, we are able to work with the Congressman’s office to provide him with the information we feel is important to share.

Why is the Caucus only in the House?

The Senate is much smaller in number, making general communication less difficult. The Senate does have a mechanism to focus on a specific issue, called a workgroup.

We want YOUR Representative to join the Caucus – invite them today by using the sample letter below!!

We need your help!

Every voice counts. Please take just a moment and send an email or make a phone call to your member of Congress.

3 Easy Steps:

  1. Find your legislator’s contact information. You can find an online form at www.house.gov or www.senate.gov.
  2. Copy and paste the letter below, adding your own personal touch.
  3. Send it!
  4. OK, I said three—but don’t forget to let us know if you send an email by dropping a note to advocacy@achaheart.org.

Sample Letter

Dear Senator/Congressman [Fill in name here],

I am writing to urge you to request to continue to provide $2 million to the Centers for Disease Control and Prevention (CDC) for congenital heart disease surveillance and National Institutes of Health funding for much needed research.

[Include a few sentences about your story and why it is important to you here]

Congenital heart disease continues to be a leading cause of premature death, particularly in infants. However, the population of survivors is growing. Estimates suggest there are nearly 2.5 million people alive today dealing with the long term consequences of congenital heart disease, including multiple complex medical complications. Congenital heart disease is a serious public health problem.

[If you are writing to your Representative, you can also ask them to join the Congenital Heart Caucus here]

If you would like any additional information or sample report language, please contact advocacy@achaheart.org.  

Thank you,
[Your Name, Your city/state]

Share Your Story

Your story, your connection with congenital heart defects, is the most powerful tool you have for moving legislators into action.

Use Social Media

Social media also has the potential to be an incredible advocacy tool. By using social media together with existing ACHA advocacy efforts, we can offer an even greater impact. You can use tools such as Facebook and Twitter to connect with legislators, engage your friends, and bring the CHD community together.

Action Alerts

Occasionally, there are times when we need you to urgently connect with your lawmakers. We communicate these through emails called Action Alerts. To receive updated information on opportunities to take action, please join our email list by contacting advocacy@achaheart.org. You can also check back to this page frequently, as we post our action alerts at the top!