Hearts United 2008 Medical and Educational Conference
First-Ever Gathering of Children with Rare Hypoplastic Right Heart Syndrome Brings Families Together in Minneapolis, MN.
Bloomington, MN, June 25, 2008 --(PR.com)-- The non-profit organization Hypoplastic Right Hearts held its first-ever medical and educational conference, Hearts United 2008, in Bloomington, MN June 18-21, 2008. Families with children born with hypoplastic right heart syndrome (HRHS) from around the US and Australia gathered to meet in person for the first time, and some families had never met another child in person with the same diagnosis.
The members of Hypoplastic Right Hearts planned and fundraised for almost 3 years to make this special event happen. The medical and educational components of the Hearts United conference included presentations from major sponsor Medtronic, maker of transcatheter valve replacement and pacemaker technology; Dr. Roger Breitbart from Children’s Hospital Boston speaking about Fontan surgical outcomes; and inspirational speaker and local Twin Cities adult CHD/HRHS survivor Nick Zerwas.
Five years ago when Amanda Adams of Colorado had a baby boy born with a complex, life-threatening congenital heart disease (CHD) where the right ventricle of the heart does not develop properly, she felt all alone as her newborn son faced multiple open heart surgeries to have a chance at survival. Adams searched online for pertinent data, but “there was virtually no information on the Internet at that time about hypoplastic right ventricles, just hypoplastic left. It seemed almost impossible to find information that was relevant or easy to understand. The statistics I found were outdated, for the wrong diseases, or just plain terrifying. I never felt more alone in my life,” said Adams.
Consequently, Adams founded and became president of the online non-profit group, Hypoplastic Right Hearts (www.hypoplasticrighthearts.org). Hypoplastic Right Hearts provides emotional support for parents, primary caregivers, survivors and their spouses, and bereaved parents of children with specific Congenital Heart Diseases (CHD) that result in a hypoplastic right ventricle. What started with a handful of “heart moms” as a Yahoo! Group in 2003 has now grown into a worldwide membership of over 450 families.
For more information about Hypoplastic Right Hearts group and Hypoplastic Right Heart Syndrome: http://www.hypoplasticrighthearts.org
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The members of Hypoplastic Right Hearts planned and fundraised for almost 3 years to make this special event happen. The medical and educational components of the Hearts United conference included presentations from major sponsor Medtronic, maker of transcatheter valve replacement and pacemaker technology; Dr. Roger Breitbart from Children’s Hospital Boston speaking about Fontan surgical outcomes; and inspirational speaker and local Twin Cities adult CHD/HRHS survivor Nick Zerwas.
Five years ago when Amanda Adams of Colorado had a baby boy born with a complex, life-threatening congenital heart disease (CHD) where the right ventricle of the heart does not develop properly, she felt all alone as her newborn son faced multiple open heart surgeries to have a chance at survival. Adams searched online for pertinent data, but “there was virtually no information on the Internet at that time about hypoplastic right ventricles, just hypoplastic left. It seemed almost impossible to find information that was relevant or easy to understand. The statistics I found were outdated, for the wrong diseases, or just plain terrifying. I never felt more alone in my life,” said Adams.
Consequently, Adams founded and became president of the online non-profit group, Hypoplastic Right Hearts (www.hypoplasticrighthearts.org). Hypoplastic Right Hearts provides emotional support for parents, primary caregivers, survivors and their spouses, and bereaved parents of children with specific Congenital Heart Diseases (CHD) that result in a hypoplastic right ventricle. What started with a handful of “heart moms” as a Yahoo! Group in 2003 has now grown into a worldwide membership of over 450 families.
For more information about Hypoplastic Right Hearts group and Hypoplastic Right Heart Syndrome: http://www.hypoplasticrighthearts.org
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Contact
Hypoplastic Right Hearts
Kristen Sherman
480-321-9910
www.hypoplasticrighthearts.org
Kristen Sherman
480-321-9910
www.hypoplasticrighthearts.org
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