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The Paramus Post - Greater Paramus News and Lifestyle Webzine
Sunday, July 21 2019 @ 10:11 PM EDT
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The Paramus Post - Greater Paramus News and Lifestyle Webzine
Sunday, July 21 2019 @ 10:11 PM EDT
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The Paramus Post - Greater Paramus News and Lifestyle Webzine

A Million Dollars to Fund Research for Children Born with Congenital Heart Disease


Big Hearts to Little Hearts, dedicated to raising awareness and research funds for children born with heart defects - congenital heart disease - hit the million-dollar mark in contributions to The Cardiac Center at Children’s Hospital of Philadelphia (CHOP) with a recent $70,000 check. The grass roots group has had an impact nationally and locally.

Formed in Monmouth County in 2003 by parents of a CHD patient who were concerned more research was needed for this deadliest of birth defects, Big Hearts has funded innovations in Indiana and Miami as well as local communities. CHD kills more children every year than all pediatric cancers combined.

“We are truly grateful to Big Hearts to Little Hearts for its ongoing support of the Cardiac Center at CHOP,” said Joseph Rossano, MD, Chief of the Division of Cardiology at Children's Hospital of Philadelphia. “The organization’s support will help power innovative treatments and breakthrough cardiac research”.

Jackson resident Catherine Kern’s 13 year-old daughter Bella was born with Hypoplastic Right Heart Syndrome, has already undergone 3 heart surgeries and will most likely ultimately need a heart transplant.  

“Bella now lives with a single ventricle, or ‘half a heart,’ said Kern. “The work that Big Hearts has done gives us great hope that Bella and so many children like her will have a better alternative than transplant and will be able to survive for a long lifetime.”

The most recent funds to CHOP will help create 3D models of tricuspid valves in CHD patients. Previous donations have supported approximately 25 initiatives at CHOP, including the Fetal Heart Program, Single Ventricle Care, Youth Heart Watch and Adult Congenital Heart Program.  Big Hearts to Little Hearts has also contributed funds to Dr. Mark Rodefield in Indiana for the Fontan Blood Pump and to Nicklaus Children’s Hospital in Miami for post-op monitoring devices, as well as local programs to supply AED equipment to Brielle and Farmingdale Elementary Schools and Manasquan Recreation Center. Last year, Big Hearts also conducted an awareness campaign urging parents to have their children screened by a pediatric cardiologist in order to prevent sudden cardiac arrest of young athletes.

“We are very motivated because we are parents of children suffering from CHD”, said  Lynne Accisano-Stanek of Farmingdale, parent and President of Big Hearts to Little Hearts. “We hope others join us. This could happen to anyone’s child. Together we are working for longer and more comfortable lives for all those with CHD - we call them ‘heart warriors’". 

Big Hearts to Little Hearts welcomes everyone to participate in their fundraising events throughout the year. Next up is a Golf Outing May 20 Jumping Brook Country Club, followed by the Dodgeball Tournament in August and the Big Hearts to Little Hearts Walk September 22 in Manasquan. The group also fields teams at Marathons and 8ks in November.

Big Hearts to Little Hearts - Supporters, Patients and Doctors Celebrate Together Caitlin DiMaggio of Lanoka Harbor, Elizabeth Engelhardt of Brick, Dr. Joseph Rossano, Dr. Matthew Jolley, Dr. Jonathan Chen, Krissi Harm of  Manasquan, Meghan Ahearn of Neptune, Joseph Ramsay of Farmingdale, Lynne Accisano-Stanek of Farmingdale, Todd Stanek of Farmingdale, Dr. Jack Rychik, Catherine Kern of Jackson, Sarah Jacobs of Brick, Melanie Joseph of Cranbury, Mathhew Kaufman of Philadelphia, Elfie Elbogen-Beer of Spring Lake, Phoebe Kaufman of Philadelphia, Judy Accisano of Brielle, Adam Harm of Manasquan,and Paul Jacobs of Brick.   Most parents of CHD babies have never heard of the disease until the time of diagnosis. Although nearly 1,000,000 children worldwide – approximately 40,000 in the USA – are born with CHD, there is very little awareness of the condition. CHD research and programs are grossly underfunded, in comparison to other pediatric conditions. With the available research programs, including several that are funded by Big Hearts to Little Hearts, there is more hope worldwide for children and young adults with CHD than ever before.  
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