Simon Prushan, 12, is getting ready for his Bar Mitzvah this fall. He's learning the aliyahs, practicing his Haftorah portion — and setting up heart screenings for students in the Radnor School District.
For his mitzvah project, recommended for all Bar Mitzvah-age members of Main Line Reform Temple, Beth Elohim in Wynnewood, Prushan teamed up with Simon's Fund (simonsfund.org), a local nonprofit that aims to prevent sudden cardiac arrest in kids by raising both awareness about heart conditions and money for heart screenings.
Prushan's goal is to organize a day of screenings for 300 Radnor students next month and to convince the athletic department at his school, Radnor Middle, to make screenings mandatory for all student athletes.
So far, he's been busy meeting with the superintendent and the school board and handing out flyers, and he even went to Children's Hospital of Philadelphia to get screened himself, so he can explain the process to his peers.
"I was interested in Simon's Fund because I have the same name, and because when I looked on the website it said a lot of the heart conditions they find are in athletes, and I'm an athlete," says Prushan. "I didn't know when I started it would turn out to be this big, but I think it's doing good for the community."
He also plans to attend the second annual Simon's Day celebration on Sunday, March 13, at the Ambler Theater. The event is designed both to raise money for Simon's Fund and to thank those who have helped out this past year, says Darren Sudman.
Sudman and his wife, Phyllis Satinsky Sudman, set up Simon's Fund after losing their 3-month-old son to sudden cardiac arrest six years ago.
Initially, doctors listed sudden infant death syndrome as the cause of death.
"But that doesn't really tell you anything — it just means a baby died," says Sudman. "Our pediatrician told us we should all get our hearts checked, because if a family member under 50 dies suddenly, it can be a sign of a cardiac problem."
The Sudmans, who have two other children, got checked.
Phyllis was diagnosed with Long QT syndrome, a hereditary defect in the heart's electrical system that can cause fainting and arrhythmia (abnormal heart rate or rhythm), according to the American Heart Association.
Some arrhythmias are potentially fatal. Simon likely had the same defect.
Scientists looking into the link between SIDS and Long QT syndrome found that about 10 percent of SIDS babies had a genetic mutation for Long QT, according to the Mayo Clinic. The syndrome is treatable, if discovered.
"When we suffered this tragedy and then found out that it is preventable in lots of instances, we wanted to make sure we were part of the solution — making sure it is prevented," Simon's father says, "so other parents don't have to go through the pain."
Through Simon's Fund, 2,200 kids and teens have already been screened. The fund works with school districts, CHOP, St. Christopher's Hospital for Children, and Nemours/Alfred I. duPont Hospital for Children in Wilmington, and recently launched a program at Abington Memorial Hospital to provide echocardiograms to all newborns.
According to Josh Weisman, director of Simon's Fund, one out of every 100 kids has a potentially fatal heart condition.
"We want heart screenings to become part of the 'standard of care,' so it's available to all families who want it," he says.
'Blazing a Trail'
"We're really blazing a trail," adds Weisman. "There isn't a heart-screening program out there that we can just put money into. We're the ones raising money, raising awareness, and then modeling what a heart-screening program would look like."
The fundraiser this weekend will feature raffles, food and live entertainment, including a comedian, a ventriloquist and a one-man circus (think juggling, tightrope walking and magic).
"It's all about celebrating families; it's a real feel-good event," promises Weisman.
Last year Simon's Day raised $85,000, enough for 2,800 screenings. Weisman and crew hope to surpass that amount this year.
"If for every 100 hearts checked they find one kid with an undetected heart condition that could possibly kill them, it's worth it," says Sudman. "It's really not hard to motivate when you know what you're doing can save lives."