Webinar: 2015 Advocacy Update

Wondering what “advocacy” is all about? Can’t go to Washington D.C. but want to participate anyway? Interested in knowing what the Pediatric Congenital Heart Association priorities are this year?

Our 2015 Advocacy update will answer precisely those questions!

2015 Advocacy Update

Tuesday, February 17th 7:30pm ET/6:30pm CT

Click here to register

Join us to learn more about the advocacy efforts of the Pediatric Congenital Heart Association, our top priorities for 2015 and how you can get involved and make a difference!
The power of your story can help us Conquer CHD!

After registering, you will receive a confirmation email containing information about joining the webinar.

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Help Monitor and Manage CHD

The Pediatric Congenital Heart Association is pleased to support the efforts of the American College of Cardiology to bring you this opportunity:
Whether you are a parent caring for a child with congenital heart disease, or an adult managing your own care, NoMoreClipboard personal health records (PHRs) are a secure, online solution for tracking and monitoring your medical information. This practice, in collaboration with the American College of Cardiology, is offering CHD patients and their families free NoMoreClipboard accounts. You can use your online PHR to organize and update information from your appointments, and securely share information with the other healthcare providers you see.
Use your PHR to:
  • track CHD diagnoses and procedures
  • maintain health histories for all your family members — including conditions, medications, allergies, procedures and immunizations
  • coordinate care among all members of your healthcare team: family physicians, pediatricians,  cardiologists, neurologists and other specialists
Your NoMoreClipboard PHR is created by you and contains only the information you enter. Data is securely stored and password protected, plus you have 24/7 access to medical information whenever you need it, from any web-enabled device.
For more information or to sign- up contact lvie@nomoreclipboard.com

Give From Your Heart

Valentine's Give

It’s February and most of us are thinking about hearts. Unfortunately, not enough folks are thinking about congenital heart defects.

PCHA has been hard at work to change that. In just a few short weeks we will be co-hosting the Congenital Heart Legislative Conference in Washington D.C., where more than 100 advocates will visit their lawmakers and hundreds more e-advocates will reach out via email to get our legislators thinking about CHD.

We will also be launching a social media campaign during Congenital Heart Week to get our friends on Facebook and Twitter thinking about CHD.

Another one of our programs for 2015 is provider education, or as we like to call it, Building Bridges.  In a groundbreaking medical professional meeting last month, PCHA represented the CHD patient/parent population, encouraging congenital heart center leaders to think about transparency, empathy and CHD.

Now, we need YOU to think about CHD. This February, we need to raise $20,000 to support our education efforts like the Legislative Conference and Provider Education programs.  Every dollar you give will help empower patients.

When you see  all the hearts this month, instead of buying a dozen roses ($30) a box of chocolates ($10) or an extravagant dinner ($100) donate your Valentine‘s gift to support families of children with heart defects who need the extra love.

Collaboration for Change

ACC CV Summit

The American College of Cardiology recently hosted a Summit for providers in leadership positions to share information to improve their practice. PCHA was privileged to join Sisters By Heart in the opportunity to help educate these same amazing providers about building stronger relationships with their patients and parents through transparency and empathy.  We experienced an incredibly positive response to the patient education tool we are developing called “Suggested Questions.”  This tool, being designed collaboratively with patients and doctors, not only will empower patients by providing them with questions to ask their medical team that they may never have thought of, but in turn is educating the doctors about what parents need to know about the journey they are on.  This tool is still in draft stage and will be available for public comment in the next few weeks!

Medical Advisory Board

Through Collaboration – we will Conquer CHD.

We are thrilled that we have succeeded in bringing together some of the greatest medical professionals in the field to serve on our medical advisory board.  These dedicated folks meet monthly, providing insight, direction and expertise to support the programming of PCHA.  We are so grateful!!



Brad Marino, MD, MPP, MSCE – Lurie Children’s Hospital






Amy Basken, MS – Pediatric Congenital Heart Association

Staff Co-Chair






Jonathan Byrnes, MD – Cincinnati Children’s Hospital






Michelle Gurvitz, MD – Boston Children’s Hospital




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Dunbar Ivy, MD – Children’s Hospital Colorado




Jeff Jacobs


Jeffrey P. Jacobs, MD – All Children’s Hospital




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Kathy Jenkins, MD, MPH – Boston Children’s Hospital




Dr. Lantin


Regina Lantin, MD – Texas Children’s Hospital






William T. Mahle, MD – Children’s Healthcare of Atlanta






Matt Oster, MD, MPH – Children’s Health Care of Atlanta




Sara Pasquali, MD – C.S. Mott Children’s Hospital

Julie Slicker


Julie Slicker, MS, RD, CSP, CD, CNSD – Children’s Hospital of Wisconsin




James Tweddell, MD – Children’s Hospital of Wisconsin


January is Birth Defects Prevention Month

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Birth defects are common, costly and critical. Every 4½ minutes, a baby is born with a major birth defect.  Professionals, community groups and the public can act to reduce the risk of certain birth defects, detect those that occur as soon as possible and prevent secondary complications.

Heart defects are the most common birth defect and leading cause of birth defect related infant death.  While, most heart defects are not preventable, we encourage women to make a PACT for their own health and the family they may have one day.   All women, including teens, can lower their risk of having a baby born with a birth defect by following some basic health guidelines throughout their reproductive years.

Plan ahead

  • Get as healthy as you can before you get pregnant
  • Get 400 micrograms (mcg) of folic acid every day

Avoid harmful substances

  • Avoid drinking alcohol and smoking
  • Be careful with harmful exposures at work and home

Choose a healthy lifestyle

  • Eat a healthy diet that includes fruits, vegetables, whole grains, low fat dairy, lean proteins, and healthy fats and oils
  • Be physically active
  • Work to get medical conditions like diabetes under control

Talk to your doctor

  • Get a medical checkup
  • Discuss all medications, both prescription and over-the-counter
  • Talk about your family history

Women and their loved ones can participate in their PACT and take these important preventive steps that can lead to a reduction in the number of birth defects.

Advocacy Success – Increased CHD Funding!

Your efforts are working!  

Congress is working hard to wrap things up before the end of the year.

We are thrilled to report that the anticipated budget includes an increase of $1.1 million from $2.9 million to $4 million in 2015 to fund public health research and data collection through the Centers for Disease Control and Prevention, as outlined in the Congenital Heart Futures Act.

Additionally, congenital heart disease was included, again, in the Department of Defense’s Peer Reviewed Medical Research Program, which is funded at $247.50 million, an increase of $47.5 million! This is a competitive grant opportunity for which CHD researchers can apply. We also had members of the CHD community reviewing the grants.

We must continue our efforts!

Each year, advocates, like you, connect with their lawmakers through emails, phone calls and visits.  Your voices are being heard – despite serious budget cuts, we continue to see increases in CHD funding opportunities.

We are making progress, but there is still a huge need for funding of public health research and data collection to better understand congenital heart disease across the lifespan.

Your are the answer!  Your story matters.  Take Action:

Sign a petition.

Write your legislator.

Donate to support our advocacy efforts.

Join us in Washington D.C.!

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Advocacy Success – Newborn Screening

PCHA has been supporting the efforts of the March of Dimes to ensure passage of the Newborn Screening Saves Lives Act.  We have reached out to you in the past to contact your legislators about this key support for screening including CCHD screening.  We wanted to you with an exciting update!!

From our Friends at the March of Dimes:

Breaking News: Senate Passes Newborn Screening Bill!

We are one step closer to the finish line! The U.S. Senate passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act (NBSSLRA), by unanimous consent on December 8. The bill now returns to the House for ratification of an amendment included by the Senate.  If the House approves this final change, the bill will go to the President for signature into law. Thanks to all of you for your commitment and always answering the call to action! It is because of this dedication and all of your efforts that legislators listened and worked to get this important legislation passed.
As a reminder, NBSSLRA extends federal programs that provide assistance to states to improve and expand their newborn screening programs; supports parent and provider education; and ensures laboratory quality and surveillance for newborn screening programs. For more information, check out our press release.
Your hundreds of phone calls, letters, meetings and messages letting legislators know how important this issue is to you made a real difference! Congressional offices let us know they were hearing from constituents and stakeholder groups alike about the urgent need to pass this bill. We want to also thank our champions Senators Kay Hagan and Orrin Hatch and Representatives Lucille Roybal-Allard and Mike Simpson for their steadfast efforts to help improve the health of babies nationwide.
Stay tuned as more news and movement on this bill develops throughout the week!



Click here to donate, today!

Give Time.
Give Money.
Give Hope.

Give Big

Give Time: Join our 1 Voice / 40,000 Strong Campaign

Give Money: Click here to donate, today!

PCHA works hard to empower patients.

Your support brings the patient voice to Washington D.C. through our upcoming Legislative Conference and ongoing advocacy activities as we work to support the 100’s of millions of dollars of research funding available to CHD.

Your donation is needed to help us bring transparency to patient care.  We are working with patients, parents and medical providers to create education and resources to help patients and parents make informed decisions about CHD care.

We have a lot planned for 2015 that needs your help!!

Patient Education – Our Transparency Project would like launch its “Questions” series.  Downloadable resources that provide tools for parents and patients to use to talk with their doctors and surgeons.  By the end of the year, we will provide additional robust data driven information on our website.

Physician Education – PCHA has been invited to participate in several upcoming medical conferences, presenting the imporatance of patient/family involvement and the need for transparency to truly accomplish this.

Research Funding – Our Legislative Conference kicks off a great year of advocacy.  We look forward to supporting research funding, looking at new policy opportunities and building legislative champions.  We will also be working hard to bring opportunities for all of our amazing advocates to get involved!!

Give Time: Join our 1 Voice / 40,000 Strong Campaign

Give Money: Click here to donate, today!


Together, we will Conquer CHD!

Walking to Washington

Walking to Washington

Miles Walked: 610/860  

Donations Earned: $500.00

Join me as I ‘walk the walk’ in preparation to ‘talk the talk.’  I am walking from the Pediatric Congenital Heart Association National Office in Madison, WI ‘arriving’ in Washington D.C. just in time for the Congenital Heart Legislative Conference February 25-26, 2015.

Follow my progress here.

Donate Now

Just a few weeks left, a few hundred miles and a few hundred dollars.

Help me make it to the finish line and reach my goal of 850 miles/$850!

By clicking the button above you can donate by credit card or virtual check.  If you would prefer, you may mail a sponsorship check to PCHA,14 Ellis Potter Court, Suite 100, Madison, WI 53711.

Why Donate?

Every 15 minutes a baby is born with a heart defect.  Every 15 minutes, a new challenge is thrust upon a family. There is no cure. If a baby is lucky enough to survive, they are faced with the life long consequences of congenital heart disease.

During one of those 15 minutes, our world was forever changed by congenital heart defects with the birth of our youngest son.

I am walking to help Conquer Congenital Heart Disease.  I want to ensure that all children, especially my son, not only survive, but thrive to live a long, productive life with congenital heart disease.

I am also walking to support the Pediatric Congenital Heart Association.  In just one short year, it has demonstrated a profound impact uniting both the medical and the patient communities to join in the fight to Conquer CHD.

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.”  It is founded on the key purpose to be the resounding voice of the pediatric patient population through collaboration in education, research and advocacy.  PCHA works to reduce the impact of congenital heart disease while striving to realize a world free from it.

Large or small, any donation will benefit children and adults with heart defects.


Amy Basken – Founder and Director of Programs at PCHA

Donate Now