Supporting Development in Children with CHD

The Pediatric Congenital Heart Association recognizes that with increasing knowledge of issues relating to long term outcomes for children with congenital heart disease, as a parent, it can be difficult to understand what it might mean for your child.

Photo Courtesy of T. Rainey

Photo Courtesy of T. Rainey

In 2014, the American Heart Association published an article by leading neurodevelopmental and pscyho-social experts, including PCHA Medical Advisory Board Member, Erica Sood, PhD. This article provides helpful information about what to expect and potential concerns for children with CHD through the transition into adulthood.  This is not a substitue for medical advice, rather a resource to begin a conversation with your doctor.

The complete article can be found in the educational resources section of our website.

Here is an image of the included diagram:


Brosig, et. al Circulation. 2014; 130: e175-e176

Media Advocacy

“Advocacy groups have carved a niche for themselves in the broadcast industry’s policy-making apparatus by first defining key public interest issues and then by advocating ways by which broadcasters may address these issues.” – Museum of Broadcast Communications 

PCHA has seen the tremendous benefits of social media advocacy. In the first half of May two of our key volunteers and dedicated advocates shared their story with a local television station and created a buzz locally and nationally, reaching tens of thousands of people with the simple message that we must do more to conquer CHD.

You, too can share your story with the media, from the comfort of your own home!


Preparing your story

The first step in any type of advocacy is to prepare your story.  This is especially important in media advocacy because you are often recorded.  But you can do it!!  Check out our Telling Your Story resource to help you develop your story.  We are more than happy to review your story or help you practice.

The next step is to identify a few key talking points.  If you haven’t already, sign-up to receive our advocacy emails that can serve as guide to what we are currently working on in Congress.  You can also contact our office for an updated list of points tailored specifically to you.

Make sure you have an ASK!!  What is it you want the listener to do?  For example: Visit a website to learn more, attend an event, become an advocate, or donate.

Lastly, it is helpful to provide any internet links and statistics in written format to make sure they are correctly delivered through the media.  The PCHA Fact Page is regularly used for this purpose.

Connecting with your local media:

Television and Radio
Most television and radio stations have an email address to submit interesting stories.  You can submit your written story through this mechanism.  It is best to confirm that it was received with a follow-up phone call.  When you call, it can be helpful to ask to be directed to the health or human interest correspondent, as this person would be most likely to pick-up your story. Tying your submission with an upcoming event, activity or project will help, too.

A letter to the Editor or Op-Ed piece are great ways to initiate contact with your local newspaper and can lead to a lengthier story.  A letter to the editor can be created directly addressed to a lawmaker and have a call to action.  An opinion or editorial piece is shares information about CHD and can highlight any work a lawmaker has already done.  It helps to write this in conjunction with a medical professional who can provide technical expertise.

Social Media
You can also connect with media personalities or stations through Facebook and Twitter.  You can share your story on their page, or tweet a link to a resource like our fact sheet.

Tell us about it:
Be sure to let us know you participated in Media Advocacy.  We can follow-up with the media folks if needed.  We can also promote any features that result through social media and share with your lawmakers!