Educational Resources

Trusted Resources

It can be very difficult navigating the world of congenital heart defects. Knowledge certainly is power. Our goal is to empower patients and families by providing them with educational resources they need to achieve the highest quality care available to them.

The following trusted resources provide information about congenital hear defects. Many of the major congenital heart treatment centers also offer excellent information about CHD.

Facts on Congenital Heart Disease

Congenital heart disease (CHD) is the life-long consequence of a heart defect, or a structural abnormality of the heart present at birth. Heart defects are the most common birth defects, and the leading cause of birth defect related infant death. There are 40,000 babies born with heart defects each year and more than 5% of them will not live to see their first birthday. Thanks to advances in medical research, however; more and more children are surviving. Promising estimates suggest there are currently more than two million people living with heart defects. Yet, those who survive often face multiple surgeries, a lifetime of doctor’s appointments, medications, therapies and other interventions, and still face premature death.

Congenital Heart Disease is #1 birth defect
Nearly 1 in 100 newborns are born with CHD
40,000 infants are born in the US each year with CHD
CHD is as common as autism and 25 times more common than Cystic Fibrosis
There is an estimated 2-3 million people living with CHD
#1 cause of birth defect related deaths
25% of children born with CHD need heart surgery or other interventions to survive
15% of babies born with CHD will not see their 18th birthday
There is no cure
In 2009 direct hospital costs alone for children and adults with CHD was over $2 billion dollars
Those affected with CHD have 3-4 times higher rates of ER visits than the general population
Fewer than 10% of adults with CHD are receiving recommended care

Research

PCHA supports both Federal Research as well as privately funded organizations.

The Importance of Research

There is little understanding of how to prevent heart defects and unfortunately, no cure, either. Thanks to medical advances, children with congenital heart defects are living longer, but there is still much work to be done. Through our organization we strive to disseminate new research findings and the implications they create on the CHD community. It is part of our mission to continually support the research necessary to find the best treatments and work towards a cure for congenital heart disease.

The Importance of Participating in Research

Without research there will be no cure. Although funding is essential to research studies, they also cannot be completed without participation. Children are not just smaller versions of adults. Children are constantly growing changing and developing into adults. This simple fact leads to the very complex issue of why research on the proper treatments and cures for congenital heart disease needs to start with children instead of modifying the treatments that have been tested on adults. Estimates do not lead to cures, actual research and results do.

Research, Resources and Collaboratives

The National Heart Lung and Blood Institute offers an excellent resource about children in research.

Other research programs include:

Federal Research

The Federal Government is the single largest funder of congenital heart defect research. We support Federal Research by advocating for funding and working with individual agencies to ensure that their efforts remain directed at meeting the needs of the patient community. Our federal partners include the National Institutes of Health who are currently looking at why heart defects occur in development, as well as different treatment strategies. We also work with the Centers for Disease Control and Disability. The information provided by population based data collection help us provide a better understanding of congenital heart defects across the lifespan and the resulting public health burden.

Patient Centered Research

There are over 2 million people living with congenital heart defects. However, research studies are often designed by the scientists themselves. PCHA actively promotes the idea that the patient should be at the center of any research study from beginning to end. We represent the patient voice in research collaboratives and individual research projects.

Advocacy

PCHA is the resounding voice of the pediatric congenital heart community. Our voice is strengthened by the involvement of all of those who share our mission. Those who share their stories, and advocate on behalf of the people in their lives affected by congenital heart disease. Each one of us has a story to tell. These stories make a great impact when told the right way to the right people. Let PCHA help you advocate to fellow patients, doctors, researchers and lawmakers. These are the issues that PCHA is currently working on.

Learn More

Guide for a Successful Meeting

Check out these guidelines for an effective in-person meeting with your lawmaker.

Personalized Leave Behind

Create your own handout that will certainly make an impact!

2014 Policy Priorities

Print and share this document with your legislators. Or, save it and send via email.

How to contact your lawmakers

Guide to various ways to connect with your elected officials

Legislative Champions

Check out the list of lawmakers that support our cause.

Take Action Now

Stand Up for Research and Quality

Collecting Petitions is Easy: 1) Print and cut in half. 2) Get friends and family to sign. 3) Mail petitions to PCHA at: 14 Ellis Potter Court, Suite 100, Madison, WI 53711

1 Voice 40,000 Strong

Each year, 40,000 babies are born with a congenital heart defect. Together we can be the voice for this vulnerable population. Working together we can amplify the voice of the CHD community, increasing our impact on lawmakers.

We are asking 40,000 patients, family members, friends, medical professionals and lawmakers to come together to:

Stay informed
Share your story
Make a difference

Click here to be a part of something bigger, today!

1 Voice 40,000 Strong

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I Did it!

Have you recently taken action as a PCHA advocate? If you’ve taken multiple actions, please enter each one at a time.

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Stories

Jacob Kilby

I want to introduce you to an amazing young man who will change the way you look at the world. Jacob Kilby is a young, 19 year old local San Diego surfer who is facing a major health challenge. You often hear Read on! →

Noah Bella

Despite enduring four heart surgeries and six cath procedures since birth, our daughter, ten-year-old Noah Bella has never let her Congenital Heart Disease define who she is. Noah has loads of personality: charisma, magnetism, strength, character, and an ever-present mindset to Read on! →

Mirabel Atkinson

Nine-year-old twins, Mirabel and Sofia, share a special bond. Born at 32-weeks, they were more exceptional than most identical twins in that they shared a placenta and an amniotic sac. But one significant difference they have is that Mirabel was Read on! →

Rayna Schuh

In June of 2006 my husband Tim and I found out that our family would be blessed with the gift of baby. As you can imagine we were excited and anxiously awaiting that first Dr.’s appointment to hear our new baby’s heartbeat. Read on! →

Jack Radandt

Jackson was born on Easter Sunday, 2001. We brought our perfect 8lb 6oz baby home from the hospital and enjoyed two days with our new little one. All seemed well; Jack was a wonderful, healthy baby. At least that’s how Read on! →

Kieran Touney

When Kieran was born, I felt like I was giving birth in a theater filled with an expectant audience—a repertoire of doctors stood around, anticipation on their faces, waiting to spring into action. As Kieran had been diagnosed with HLHS Read on! →

Share Your Story

You have been through a lot. You’ve got a story to tell. You can use your story to make a difference! Share your story with PCHA and others in the congenital heart disease community.

Click Here to Share Your Story

Create your story in 500 words or less. Complete the form below. Cut and paste your story into the large text box. If you would like to include a picture, you can email it to advocacy@conqueringchd.org.

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About Us

We are founded on the key purpose to be the resounding voice of the pediatric patient population through collaboration in education, research and advocacy to reduce the impact of congenital heart disease while striving to realize a world free from it.

Education: Knowledge is power. PCHA seeks to empower patients and families by providing them with the educational resources they need to achieve the highest quality care available to them. First, we will hold meetings to connect the medical professional and patient communities to identify quality standards that can be meaningful to patients and families. Then we will work with marketing, community services providers and patients to develop messaging, resources and communication vehicles (print, online, electronic communication) that can reach the diverse patient/family population.

Research: PCHA understands the desperate need for research to improve outcomes for patients with CHD. We work with federal agencies, medical professionals and researchers to promote patient focused research. We promote participation in research collaboratives in many different national, regional and local settings. Advocate for funding of these research efforts is also a key to In addition, PCHA will work with patients and families, communicating advances in research as well as educating them about the importance of engaging in research, themselves.

Advocacy: PCHA seeks to amplify the voice of the CHD community to inform policymakers of the significant public health burden related to CHD. Through this voice we seek to inform legislators and the CHD community and create an impact on related policy decisions. Our current priorities include advancing the understanding of CHD through data collection and research, improved treatment options through age appropriate research, and ensuring access to quality care.

Who we are:

David M. Kasnic, Executive Director

David is a founding member of the Pediatric Congenital Heart Association.

David brings over 15 years of executive management and a true passion for high growth businesses. His experience in leading the growth of a small business through a rapid growth period, acquiring several companies and selling the company to a private equity group has given him a wealth of knowledge that few operators experience. He attributes his business success to listening to both internal/external customers, continual innovation, strategizing for growth and hiring key talent.

Outside of work, David enjoys spending time with his family. He is an avid bike rider and lover of the outdoors. He earned a Bachelor of Science degree in Finance/International Business from the University of Tulsa; graduating in 1992.

Amy E. Basken, Director of Programs

Amy is a founding member of the Pediatric Congenital Heart Association.

As the mother of a child with a heart defect, Amy has had the privilege of spending the last nine years leading congenital heart disease advocacy efforts for many of the largest national congenital heart disease organizations, coalitions and consortiums. Her accomplishments include the introduction, passage and funding of the Congenital Heart Futures Act, the development and growth of the Congressional Congenital Heart Caucus, as well as coordinating national messaging for the Critical Congenital Heart Disease Screening movement.
Amy has a Masters of Sciences degree from the University of Wisconsin – Madison, graduating in 1996. She worked for 10 years as a clinical speech pathologist with an expertise in voice and swallowing pathology.

When she’s not working to empower others, Amy is busy managing an active household that includes her husband and three school age children. In any spare time, you will find Amy singing, knitting, or escaping into a good book.

Contact

14 Ellis Potter Court, Suite 100
Madison, WI 53711
608.370.3739
advocacy@conqueringchd.org

Welcome to PCHA

PCHA Blog

November 10, 2014

Walking to Washington

January 26, 2015

Collaboration for Change

Educational Resources

Trusted Resources

Facts on Congenital Heart Disease

Research

PCHA supports both Federal Research as well as privately funded organizations.

The Importance of Research

The Importance of Participating in Research

Research, Resources and Collaboratives

Federal Research

Patient Centered Research

Advocacy

Learn More

Guide for a Successful Meeting

Personalized Leave Behind

2014 Policy Priorities

How to contact your lawmakers

Legislative Champions

Take Action Now

Stand Up for Research and Quality

1 Voice 40,000 Strong

1 Voice 40,000 Strong

I Did it!

I Did it!

Stories

Jacob Kilby

Noah Bella

Mirabel Atkinson

Rayna Schuh

Jack Radandt

Kieran Touney

Share Your Story

About Us

Who we are:

David M. Kasnic, Executive Director

Amy E. Basken, Director of Programs

Contact