Blog

  1. HLHS Dad goes to Washington D.C.; Part 2

    Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life. Read the first part of his story…

  2. Finding Hope in Washington D.C.

    Tori is  mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Pediatric Congenital Heart…

  3. Advocacy Works – Dear Colleague Letter

    Thanks to the amazing efforts of advocates – great things are happening in D.C.! Senate Dear Colleague Letter: In fact – in direct response to a visit by his constituents, Senator Grassley has agreed to be the Republican Co-Author of the Senate Dear Colleague Letter with Senator Dick Durbin!  We are expecting the letter to…

  4. HLHS Dad goes to Washington D.C.; Part 1

    Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life. As Day 1 began to arrive it…

  5. Volunteer Opportunities

    Be a part of something bigger. The mission of the Pediatric Congenital Heart Association is to Conquer Congenital Heart Disease.  We know that we cannot do it alone. PCHA is growing rapidly in size, reach and programming!  We are forming several new volunteer parent/patient committees and need your help to make them a success. Getting…

  6. New Legislative Champions Added

    Congenital Heart Disease advocates from the Pediatric Congenital Heart Association visited, emailed and called their legislators, yesterday asking the members of Congress to support CHD research and surveillance. Advocacy worked! We have already added new legislative champions to the list with new Caucus members and Dear Colleague Signers.  Check out the Legislative Champions list to see…

  7. ACTION ALERT: A Community United for CHD

    Encourage your members of Congress to support congenital heart disease research – call or email them, today. On February 26, 2015, congenital heart disease (CHD) advocates from across the country, representing more than 10 organizations are reaching out to their lawmakers to ask for three things: Provide $10.0 million in FY2016 to the Center for Disease…

  8. ACTION ALERT: Email Congress a Reception Invitation

    Encourage your member of Congress to learn more about congenital heart disease. Invite them to attend the Congenital Heart Reception in conjunction with our Congenital Heart Legislative Conference. Send an email today to encourage your members to attend. Take action in three easy steps: 1) Find your legislator’s contact information. If this is your first…

  9. Christopher Memoli

    Growing up with a Rare Congenital Heart Disease-Christopher Memoli is a survivor of a major heart defect known as Congenitally Corrected Transposition of the Great Arteries (CCTGA). He had his first open heart surgery at 19 years old and his second open heart surgery at 44 years old. Despite the challenges of his condition, he…

  10. 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…