A Commitment to Healing Hearts

Susan Gruen Helsinger turned a personal tragedy into a lifesaving venture by creating a foundation that funds cardiac screenings for children.

August 30, 2016

Susan Gruen Helsinger sells real estate to improve the quality of people’s lives. On the side, she’s dedicated to saving them.

Three years ago, Kaitlyn Paeth from Merrick, on New York’s Long Island, was diagnosed with hypertrophic cardiomyopathy, a thickening of the heart muscle that makes it difficult for the heart to pump blood. Kaitlyn was 14 at the time, and the only reason her condition was diagnosed was that she had received a free echocardiogram heart screening at her school. She’s one of 72 children who have been diagnosed with a cardiac abnormality because of Helsinger’s work as the founder and president of the Jason F. Gruen Research Foundation.

Kaitlyn’s condition, although treatable, isn’t curable, and it puts her at a high risk for cardiac arrest. It also happens to be similar to the condition that caused the death of Helsinger’s own son Jason in 1985. Jason was 15 when he collapsed walking into his first-period class on an April morning. Back then, the school wasn’t equipped with defibrillators, and by the time she arrived at the hospital, Jason was gone.

A day later, Helsinger found herself in Jason’s closet picking out his burial clothes. Sobbing, sitting on the floor, she decided she would do something to try to prevent this kind of tragedy from happening to other families. “You never get over it; it doesn’t matter how much time goes by,” she says. “Jason was a loved young man. He was kind and enjoyed life,” Helsinger says. “Almost a thousand people came to his funeral. Everyone was affected by it and no one knew what to do.”

Hope out of Tragedy

Helsinger quickly came up with a plan. Her can-do spirit, along with her prior experience as a business owner and — coincidentally — a cardiology nurse, helped get it into motion. Her marriage, however, could not survive the trauma. She and Jason’s father Jon Gruen divorced a few months after their son’s death. She sold her half of an optical company and a toy store she co-owned in New York, became a paralegal, and in 1986 created a foundation using donations made in Jason’s memory.

Her first action that year was funding a research grant to study cardiac abnormalities and sudden death in young adults at Deborah Heart and Lung Center in Browns Mills, N.J. Helsinger did her own research and consulted with Dr. Fred Bierman, a renowned pediatric cardiologist and friend, to determine where to direct the foundation’s funds. She’s also helped send cardiologists to a conference in Italy, which is the only country in the world that funds cardiology screenings for all children. “My dream is for everyone to have the ability to get an EKG and echocardiogram here in the U.S.,” Helsinger says. “If Jason had had that, at least we would have known and would have been able to take action with medications and procedures.”

In 1988, Dr. Welton Gersony, director of the Pediatric Cardiology Center at NewYork-Presbyterian Hospital, sought support from Helsinger for the planned Children’s Heart Center at Columbia Presbyterian Medical Center. After the foundation signed on, other nonprofits and corporate backers got on board as well. Within two years, the world-class facility had opened its doors.

A New Life Path

Helsinger’s entry into real estate came about when she met her second husband, Jay. They decided to take real estate classes, and bought a real estate company together, which grew to nearly 100 agents. They had a son, Connor, who’s now 24.

“I always enjoy running a company and building up businesses,” Helsinger says, citing her parents’ influence — they were active in the Jewish War Veterans — on her work ethic and passion for philanthropy. “I was taught that you must always make time to give back,” she says. At times, though, balance is difficult as she still finds herself up at 2 a.m. emailing on behalf of the foundation. Over the past 30 years, she has raised more than $2 million for the foundation.

Jay Helsinger died suddenly of pneumonia in 2004, but Susan continued to run the brokerage, Custom Real Estate Group, until Douglas Elliman Real Estate acquired it in 2010. Now Helsinger is an associate broker at the Merrick office.

In addition to managing her real estate career and family responsibilities, Helsinger has continued to raise funds to obtain equipment for two local hospitals, including portable echocardiogram machines and a cardiac event recorder.

Dr. Rubin Cooper, chief of pediatric cardiology at Cohen Children’s Medical Center in New Hyde Park, Long Island, says the hospital sees 13,000 children annually. He credits Helsinger for keeping the cardiology lab’s equipment up-to-date. “It can be lifesaving, life-altering,” Cooper says. “If you can find something that can be surgically treated or medically evaded—a congenital defect that’s not immediately life-threatening —you can lengthen [that person’s] lifespan.”

Saving One Life at a Time

Helsinger’s greatest passion is to help identify cardiac issues earlier in children before they pose an immediate threat. For the past nine years, she has been coordinating and funding optional echocardiogram screenings of eighth and ninth graders in New York–area public schools. “During the very first screening [in 2007], we found children with abnormalities,” Helsinger says. “That sort of smacked everyone in the face.”

In all, about 2,200 children have been screened, with abnormalities being spotted in 72 of them, including Kaitlyn. “We never thought they’d find anything wrong with her,” says Kaitlyn’s mother, Dolores Paeth. “I didn’t realize how common it is. If it wasn’t for Susan’s foundation and the testing, we may not have found out until it was too late.”

During the latest screening period in January, four children out of 160 tested were diagnosed with abnormalities. It costs about $10,000 to screen 200 kids.

She runs a host of fundraising activities, including her annual holiday gift-wrapping event with a crew of volunteers at a local mall. The event collects about $25,000 in donations. She also has help from people like Jane Rubinstein, a local artist who paints storefront windows at the holidays in exchange for donations.

“People usually step up because they’re affected. I wanted to step up because I wasn’t affected. I have two healthy boys who are now 26 and 21,” says Rubinstein, who calls her effort Art For Heart, and has painted storefronts for 15 years. “Susan is saving children. And it’s enriched my life to such a degree by being involved.”

Kaitlyn Paeth, now 17, has adjusted to the realities of her heart condition. She takes a beta blocker to relax the heart muscle so it can more easily pump oxygenated blood. She’s had to limit her participation in ballet classes and her school’s kickline dance team, which are two of her passions. She channels more of her creative energies into wind ensemble and writing poetry. Even as she’s looking at colleges, Kaitlyn has to pay attention to the location and quality of the nearest hospitals.

In recent years, the foundation has donated defibrillators to numerous schools and public libraries that couldn’t afford them. Her fundraising efforts for new hospital equipment and awareness campaigns are constant. “After Jason died, I needed to change my life,” Helsinger says. “I say my soul was broken.” Although she concedes her work won’t fully repair her broken soul, each child Helsinger helps honors the memory of her eldest son.

Contact Helsinger at shelsinger7@gmail.com and the Jason F. Gruen Research Foundation at thejasongruenfoundation.org.