Parents advocacy groups

  • http://www.hudsoninitiative.org/
    Born from the sadness of losing her Hudson, Andrea Slater has conceptualised an initiative, called The Hudson Initiative, that hopes to raise awareness around the very scary reality of Congenital Heart Defects (CHDs) in infants and, eventually, to realise the introduction of Hudson’s Law, which will see Pulse Oxymetry testing becoming compulsory tests performed on newborns shortly after birth.

  • http://littlebeatinghearts.weebly.com/support-groups.html
    1 in 100 children are born with CHD and little is known why. “I have to hold on to hope. If I can get awareness out there I just know some where someone will take notice and do the research for CHD. Little is know about CHD and I know in my heart someone will find a cure. I also know that somewhere right now a little angel is laying in their mommies arms with undiagnosed CHD and I just can’t bear to hear about another child not making it because no one knew ♥. Please find it in your hearts to help me. Get in contact with your newspapers get your friends and family involved. Go big Go loud.” – Delia

  • http://sofftsa.org/
    SOFFT is a registered NPO that looks after interests of children and families who are affected by long term health conditions.

  • http://www.heartsofhopemi.org/
    Hearts of Hope SE Michigan is a non-profit organization founded in 2005 by a group of mothers whose children all share a complex heart defect. We are dedicated to providing hope and support to families affected by congenital heart defects, as well as creating awareness for this number one birth defect. Our mission was born out of a need to connect with one another, lend support, and give comfort. Our hope is that this site will educate and support all who visit.

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  • http://www.littlehearts.org
    Little Hearts, Inc. is a national organization providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.

    Our mission is to offer support, education, and hope to families affected by congenital heart defects through our support services, and to promote public awareness for this #1 birth defect.

  • www.saveachildsheartus.org
    Save A Child’s Heart (SACH) is one of the largest undertakings in the world, providing urgently needed pediatric heart surgery and follow-up care for indigent children from developing countries. Based in Israel, our mission is to improve the quality of pediatric cardiac care for children from countries where the heart surgery they need is unobtainable.

  • http://www.fiftythreehours.com
    Daniel Kiran Seabrook was born at 12:55pm on Friday the 10th July, 2009. He lived for just over 53 hours – passing away at 6:25pm on Sunday the 12th of July, 2009 in New Delhi, India. Those 53 hours were the most painful, hopeful, spiritual, beautiful and exciting hours of our lives. We thank God for every minute of them. This was no surprise – we knew in early February that Daniel had a fatal congenital heart defect (Hypoplastic left heart syndrome). We were advised to have an abortion but decided to go through with the pregnancy and birth in the hope that life would win and God would heal our little boy. This didn’t happen. Yet we love God and each other more today than we did then. This is our story….

  • http://www.conorjames.org
    Conor James Funke, was born 23 October 2017. He was perfect and healthy. After just four days of being home, he was admitted to the NICU with a suspected infection. Tests revealed that he in fact had Enterovirus, Coxsackievirus B. The virus attacked his heart and left him with myocarditis and related problems. While we held hope for his recovery, there was nothing much the doctors could do to help him aside from support his heart function in the hope that it would recover. The damage to his heart was unfortunately severe. A week after being in the ICU he developed pneumonia and had to be put onto life support (Extracorporeal membrane oxygenation (ECMO). Despite best medial efforts, Conor passed away on 17 November 2017 at just over 3 weeks old.

    Conor’s condition was rare and there were limited medical options for him as a neonate. In his honour, we have established the Conor James Foundation to raise funds for research into myocarditis in infants younger than 6 months old and for the development of educational material and support services for families whose children are affected by this condition. We hope that the Conor James Foundation can positively impact the lives of others and ultimately contribute towards finding effective prevention and treatment options for myocarditis in infants.