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.

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

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

Legislative Champions

Check out the list of lawmakers that support our cause.

Take Action Now

Email Your Legislator

Email your lawmakers and ask them to learn more by joining the CHD Caucus. Tell them your story in 3 easy steps.

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 family members, friends, medical professionals and lawmakers to come together to:

Stay informed
Share your story
Make a difference

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.

Tell us about it!

Stories

Cooper Whitehurst

My son, Cooper, is my heart hero. Cooper came into our lives completely blue, motionless, not breathing, and with a faint heart beat. We watched helplessly as a doctor and nurse performed CPR on him the first two minutes of 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! →

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! →

Zoe Lihn

In December of 2009, Stacey earned her title as “heart mom” when her unborn daughter was diagnosed with Hypoplastic Left Heart Syndrome at 18 weeks gestation. 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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Mark all that apply
- Patient
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- Legislator
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Terms and Conditions I grant to the Pediatric Congenital Heart Association, its representatives and employees the permission to use the attached story, and/or associated photo in connection with the Share Your Story Campaign. I authorize PCHA, its assigns and transferees to copyright, use and publish the same in print and/or electronically. I agree that PCHA may use such story and photographs of me or my responsible minor with or without my name and for any lawful purpose, including for example such purposes as publicity, illustration, advertising, and Web content.
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By completing this form, you are also considered a PCHA partner and will be added to our partner database.
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Visit on your desktop or large tablet device to upload and submit your story to PCHA!

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.

Founding Staff Biographies

Amy E. Basken

Amy is the President/CEO and 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.

David M. Kasnic

David is a founder of Slingshot Capital Partners LLC, a Colorado private equity firm focused on acquiring controlling interests in established businesses and leveraging the personal capital, abilities, expertise and resources of the Slingshot Partners to accelerate growth and boost operational performance.

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.

David started with Checkers Industrial Safety Products in 1999 as a Financial Analyst. He consistently earned promotions to Operations Manager in 2002, Vice President of Operations in 2005, Chief Operating Officer in 2008 and President/Board Member in 2010. Not only has he held the responsibility of managing all aspects of Checkers, but also an inter-related manufacturing company, Rimstar. Sales revenues grew over 1000% since he started with the company and EBITDA was strategically grown over 150% in the past 5 years. Checkers consistently earned numerous awards as one of the fastest growing companies in Boulder County.

Outside of work, David is an avid bike rider, Chairman of the Board and Founding Member for the Pediatric Congenital Heart Association and fundraiser for The Children’s Hospital of Colorado. He earned a Bachelor of Science degree in Finance/International Business from the University of Tulsa; graduating in 1992.

Contact

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

Welcome to PCHA

PCHA Blog

May 9, 2014

50 States, 50 Stories Campaign

July 14, 2014

Participants Needed: Preparing for your doctor’s appointment

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

Legislative Champions

Take Action Now

Email Your Legislator

1 Voice 40,000 Strong

1 Voice 40,000 Strong

I Did it!

I Did it!

Stories

Cooper Whitehurst

Mirabel Atkinson

Rayna Schuh

Kieran Touney

Zoe Lihn

About Us

Founding Staff Biographies

Amy E. Basken

David M. Kasnic

Contact