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  1. Response to 2019 U.S. News and World Report Congenital Cardiac Center Rankings

    PCHA would like to express our concerns over the recently published U.S. News and World Report U.S. News Rankings. We are encouraging patients and families to use caution when utilizing this tool when making important treatment decisions. Response to 2019 US News and World Report Pediatric Congenital Cardiac Center Rankings: Families deserve transparent information that…

  2. Action Alert: Tell your Senator to Sign-On

    In December 2018, the Congenital Heart Futures Reauthorization Act became law.  The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years.  This is 2.5 times the current funding of $4 million. Therefore we need to strongly advocate for full funding of the $10…

  3. Action Alert: Tell your Representative to Sign-On

    In December 2018, the Congenital Heart Futures Reauthorization Act became law.  The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years.  This is 2.5 times the current funding of $4 million. Therefore we need to strongly advocate for full funding of the $10…

  4. Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

    My Cause My Cleats 2018     Jaguars’ Josh Lambo to Wear Cleats for Heart Defects! Jacksonville Jaguars Kicker and Pro Bowl contender, Josh Lambo, brings much needed attention to congenital heart disease with his My Cause My Cleats charity selection for 2018. This NFL tradition will place CHD in the national spotlight, this football…

  5. School Intervention Series: A Complete Resource Guide

      PCHA welcomes back Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin School.  Today, we re-share Kyle’s wealth of information on navigating a school’s system without a dedicated school liaison. Her complete resource list is included at the end of this post for easy reference.  Going to school for a child with complex medical condition…

  6. Taking a Break for Fun: Summer Possibilities with Margaret King

    This week we are continuing with the theme of summer fun! Today we’ll hear from Margaret King, a Heart Mom, who spends her summer hanging out with her fun-loving son.   In the CHD life, sometimes it’s hard to get a break. While summer brings a brief reprieve from school expectations and IEP goals, we…

  7. Be #CHDWise and be a part of our Give a HOOT about CHD Campaign!

    Here are a few key ways to join the movement: Hello Echo! We enlisted your help to name our cute, cuddly, and wise owl and boy did you deliver! With over 70% of the votes – we officially have a winner! With your overwhelming support, the name of the official mascot of The Pediatric Congenital…

  8. Teen Topics – Advocating for Yourself

    Annaleci was taught at a young age how to speak up for herself. She found, as she grew up, just how important that is , especially when it comes to her healthcare and advocating for her needs.This week, Anna shares her story with us.    My life growing up, from an outsider’s point was hectic,…

  9. School Intervention Series: Advocating for a Program

    In her final post of a three-part series, Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin, details how to start advocating for a dedicated school liaison at your cardiac center. If you missed the series, you can find her first post here and Complete Resource Guide here.       Advocating for equal accesses to quality education for children with complex…

  10. Cosponsor the Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

        We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office. Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly…