Community Corner

Fund's Night at the Races Draws Crowd for a Cause

The Janet Fund's annual fundraiser raises money to fight one of the leading cause of children's deaths.

A crowd of 200 gathered at the Primavera Regency in Stirling for the March 3 “Night at the Races” to benefit The Janet Fund, an organization established to honor the memory of Janet Zilinski, an 11-year-old cheerleader who died suddenly in 2006 of an undetected congenital heart defect known as bilateral hypoplastic coronary arteries.

Bilateral hypoplasia falls under an umbrella of conditions which can cause sudden cardiac arrest (SCA), a condition in which the heart abruptly ceases to function due to various types of arrhythmias. Because SCA goes by many names, it may contribute to a lack of awareness of the disorder, an unfortunate reality because SCA happens to be the leading cause of death in the United States, claiming 325,000 lives each year. This is equivalent to 7,000-10,000 children dying each year, 1,000 people dying each day, or one person dying every two minutes.

There are often no warning signs or symptoms presaging the onset of SCA which is unfortunately how the Zilinski family became aware of Janet’s condition.

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On the night of Aug. 10, 2006, Janet was jogging a lap at cheerleading practice when she told a friend that she felt tired and was going to lie down. Her father Jim and her mother Karen were both at the field coaching, Jim for football, Karen for cheerleading.

“About 20 minutes into practice, a young cheerleader came running down to me and told me Janet was on the ground and was not moving,” Jim recalled. “I never ran 200 yards as fast as I did that night.”

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The Zilinskis watched helplessly as a bystander pediatric trauma nurse performed CPR until an ambulance arrived. Janet was alive and awake upon arrival at Overlook Hospital, at which time the Zilinskis were able to speak with Janet and tell her that they loved her.

But Janet went into cardiac arrest again a short time later and was unable to be revived.

In the desperate time after Janet’s death, both Jim and Karen Zilinski vowed that they would do anything they could to prevent the death of another child from SCA and subsequent anguish for family and friends left behind. In those moments, the Janet Fund was born.

“We felt that Janet’s life was meant to impact so many others,” said Karen. “But at the time, we knew little to nothing about sudden cardiac arrest in youth. In the search for answers we educated ourselves as much as we could.  We learned that automated external defibrillators were the only hope for surviving SCA and that our playing fields didn’t have them. In addition, many coaches and parents didn’t know CPR and New Jersey schools aren’t required to have AEDs.”

This realization spurred the Zilinskis, now representing the Janet Fund, to lobby the New Jersey legislature to pass “Janet’s Law” (S-393; A-781) which would help protect New Jersey’s youth from sudden cardiac death.

Janet’s Law would require that:

•   Every New Jersey school have an AED, trained responders and an emergency action plan for Sudden Cardiac Arrest.

•   An AED be available within reasonable proximity of the school athletic field or gymnasium;

When an AED is used within three to five minutes of SCA, the survival rate is approximately 75 percent, and every minute of delay in defibrillation results in a 10 percent decrease in survival.

Despite the same initial feelings of helplessness engendered by Janet’s passing, hope pervaded the annual gala at the Primavera Regency with two teenage survivors from New Jersey present.

Guest of Honor Will Gerhardt, 18, shared his story to highlight the importance of the ready availability of AEDs. Will suffered his SCA on Oct. 25, 2009 while in the parking lot at Giants Stadium. For some time, he had unknowingly been suffering from myocarditis, an inflammation of the heart muscle caused by viral infections, viruses, or immune diseases. It revealed itself that day with devastating speed.

Will collapsed, but luckily Ivan Baron, with whom he was attending the game, was able to get an emergency vehicle nearby. Will was shocked with an AED seven times, both in the parking lot and on the way to the hospital. Despite suffering an anoxic brain injury, Will was able to make a full recovery. Later, he successfully lobbied the administration of his high school, Morristown Beard, to install AEDs on the school’s campus.

And on Jan. 27 of this year, 15-year-old Jimmy Dolan was in his garage after shoveling snow when he collapsed in SCA. His father was able to perform CPR until police arrived with an AED and resuscitated him; EMTs arrived within four minutes and transported him to the hospital where he subsequently underwent surgery to implant an implantable cardioverter defibrillator. 

“If he had been at practice at the football field, it would have been a different story,” Jimmy’s stepmother Karen Dolan said.

All proceeds from the evening at Primavera Regency will be put towards the Janet Fund’s efforts to donate AEDs to New Jersey schools and youth sports, plan awareness events, assist with cardiac screenings, and coordinate CPR and AED training. Many area businesses and groups donated to the event to support the fundraising, and photographer Mark Friedman donated his services to help the cause.

Attendees had the opportunity to bid on numerous gift baskets, artwork, sports memorabilia, jewelry, golf outings, a behind the scenes tour of Fox 5 studios in New York City, and more.

The Janet Fund also presented awards to those individuals whom it felt had done the most to increase awareness about SCA during the previous 12 months. In addition to Will Gerhardt, Miss Champagne Springs 2010 Carissa Palumbo, and Janet’s friend Marissa Ruskan were honored as well. 

For organizing a fundraiser through which she sold more than $700 worth of pre-wrap and watches to benefit the Janet Fund, Marissa received the Hope Award. Carissa was acknowledged for advocating for Janet’s Law and hosting a fashion show fundraiser. Will Gerhardt was awarded the Live With Heart award  for his inspiration and determination.

“It’s not fair to lose such great people, but it’s great that people can be saved,” Marissa said. “I’m happy I could have known her and I’m happy to be here with people tonight knowing that everyone will know how great Janet was.”

But merely knowing what a great person Janet Zilinkski was is not enough, nor are Janet Fund-related activities alone enough to ensure that the citizens of New Jersey and beyond know of the hidden danger that is SCA. This will require early education in first aid basics and CPR so that, even if someone is unaware of the nature of SCA, they can respond quickly and effectively to prevent an untimely death.

Tragically, many more New Jersey youth have been lost since 2006 including BJ Giannone, Tommy Adams, Brian O’Donnell, James Bliss, Sean Fisher, Krittim Sherrod and Brandon James. 

Rich Thomasey, former track coach at Summit High School and family friend of the Zilinskis, “thinks there are too many venues without AEDs."

"If you look at Pleasant Valley Park [in Basking Ridge] with all of the athletes in cross country, field hockey, tennis, soccer...there’s no trainer and the only people with any CPR training are the coaches," he said. "There are a lot of people at these kinds of sites and that particular type of device is not available. If even one person can be trained in CPR, I think it’s a real plus.”

Mary DeStefano, first lieutenant of the Warren Township Rescue Squad and one of the first responders the day that Janet collapsed, stresses that all rescue squads need more volunteers, and those that do are helping to foster the growth of an environment in which the average person is aware of first aid techniques that will help save people like Janet, and increase awareness of SCA in the general population.

“For so many families, the cardiac event itself is the first inkling that anything was wrong,” she says. “There are a lot of people doing good work, but we need to spread the load.”   

The Warren Township Rescue Squad offers free CPR training and will be holding an open house from 1-5 p.m. May 15.

Like the state’s rescue squads, the Janet Fund has faced setbacks in its efforts. Despite donating 74 AEDs and training over 1,000 people in CPR, there has been pushback that CPR requirements would be overly burdensome for sports leagues already struggling to find coaches willing to participate.

Even more disheartening to the Zilinskis is the fact that Janet’s Law has still not been signed into law, largely due to a lack of funding.

“It is difficult for me to even think of the bill from a money perspective as we would give any amount of money to have Janet back,” Karen said.

Jim Zilinski calls Janet’s Law a “no brainer” in light of the fact that AEDs are already required to be present in nursing homes and health clubs in the state and says that he “will never stop pushing Janet’s Law until it is passed.”

“I made a vow and I will keep it until either the law passes or I do,” he says.

“True success will come when Janet’s Law is passed,” Karen states. “Then perhaps we can rest for just a few days.”


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