By AMERICAN HEART ASSOCIATION NEWS
For the past year, two families affected by congenital heart disease exchanged messages on Facebook and over texts. They met for the first time a week ago.
“There were tears and laughs and smiles,” said Lauren Kiefer-Foley, whose 6-year-old son Jack has a rare congenital heart defect. “It was amazing to be able to hug the family that told us, ‘Your son’s story gave us hope.’ ”
That other family is Marie Dasaro and her fiancé, Lou Campanella, whose 1-year-old daughter Hope was diagnosed with the same heart defect as Jack. The surprise meeting between the two families, both from New York and treated at NewYork-Presbyterian Morgan Stanley Children’s Hospital, was arranged by NBC’s “Today” show, which aired the segment Wednesday.
The segment included another big reveal. American Heart Association volunteer Len Berenfield of Ohio was so moved by their stories that he donated $100,000 to start a congenital heart defect research fund in Jack and Hope’s names. The Hope and Jack Fund will be established and administered by the AHA. It is the first time the nonprofit is accepting individual donations that are earmarked for congenital heart defect research.
Berenfield’s philanthropy was motivated by his own experience – his son and grandson are both heart defect survivors.
“Hanging around children’s hospitals and seeing sick kids and seeing parents whose kids have died, that’s something you never forget,” Berenfield said. “We’ve been grateful to get this far. I always hope I have the ability to support [congenital heart disease research].”
The Hope and Jack Fund will directly support research through the AHA’s Congenital Heart Defect Research Awards, which are co-funded by The Children’s Heart Foundation. People can contribute to the fund with a minimum donation of $10.
About 40,000 infants are affected by congenital heart defects each year in the United States. Research advances mean these babies are living longer, with an estimated 1 million children and 1.4 million adult survivors of congenital heart defects.
“We need research,” Kiefer-Foley said. “These kids deserve to live into adulthood. They deserve to live the same life as kids with regular hearts.”
Last week, the CHF and AHA announced the most recent recipients of the CHD Research Awards. Seven awardees nationwide were given a total $826,600 in funding for their research programs. To date, the two organizations have together funded 26 research projects totaling more than $3.26 million through the research program, with plans to ultimately fund more than $22 million in heart defect research through 2021.
Berenfield credits his son and grandson’s survival to experimental procedures that were made possible through research. For parents given the devastating diagnosis, his advice is to stay optimistic.
“If a little bit of time can be bought, sometimes it can turn into a longer-term solution,” he said. “You never know when the next advance is coming. Research is an ongoing thing. Who knows where the limit is.”
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