Thank you for wanting to learn more about Simon’s Heart. Our organization is approaching its second decade, so there’s a lot to share. Curious about our impact?
We hope that the narrative below provides insight into who we are, why we got started, and what we hope to accomplish.
The Beginning – Tragedy and Uncertainty
Curiosity and Direction
Our First Program
Focusing on the Big Kids
Simon was three months old when he died. There was no story. A few months later, Vince Bernardo, a freshman at Shippensburg University, who grew up less than a mile from Simon, died on the football field. There was a story. This disparity revealed a reality. It is more likely for there to be a discussion about sudden cardiac arrest and death when a big kid dies, particularly if s/he is a student athlete. It is much easier to amplify a conversation than start one. Once we make is safer for the big kids, it’ll be easier to make it safer for the little kids. Hence, our focus remains on middle and high school-aged students (for now).
The Second Initiative
Changing a Standard of Care
By the time the law was passed, Simon’s Heart had screened about 5,000 students. Two things were very clear. It was so rewarding to help a family find an undetected heart condition so they could live a healthier and safe life. It was also impossible for Simon’s Heart to screen every student in Philadelphia, let alone Pennsylvania or the United States. To get every student screened, Simon’s Heart would need to help change the standard of care. To accomplish this, it would have to help facilitate research.
Simon’s Heart began work on a digital registry that could be used to streamline the heart screening process and sharing data with researchers. If researchers could avoid having to raise money and gather data, they could analyze and publish more quickly and efficiently. With guidance from companies like DataMed, Amps LLC, ERT and Mortara Instruments, HeartBytes was built. Pulse Infoframe developed the data registry and platform architecture. INFINITT NA donated the image software.
The goal is to crowdsource data by working with other screening organizations and provide the de-identified data to researchers, free of charge. To date, the data has been used to publish seven abstracts for national medical conferences.
The Impact of Sports
Athletics creates passion and captures attention. It also increases the risk of sudden cardiac arrest. SCA is the #1 cause of death of student athletes. Simon’s Heart has worked hard to identify space in the world of sport and use it to deliver a lifesaving message.
In 2013, two students collapsed and died in Buford outside of Atlanta. This was also the host city of the Final Four. Simon’s Heart traveled to Atlanta to conduct a heart screening and bring awareness to the cause. NCAA Division I male basketball players face the greatest risk of sudden cardiac arrest. To this day, Simon’s Heart continues to conduct a heart screening during the Final Four.
Simon’s Heart was selected as an Eagles Care partner in 2014. For one year, the organization participated in events and was supported by the Philadephia Eagles. AED Madness was launched in 2016 with St. Joe’s, Temple, Drexel, LaSalle and Penn. Every year, fans are educated about SCA at a home game and an AED is donated to a local youth facility. In 2017, the Philadelphia Flyers and Simon’s Heart launched Czech for Hearts which ultimately became the Overtime Challenge. Through this program, Simon’s Heart has received over $50,000 and has donated thirty AED devices to local youth facilities.
After years of focusing on the prevention of sudden cardiac arrest, Simon’s Heart began to focus on the prevention of sudden cardiac death too. Heart screenings, data gathering and advocating for lifesaving legislation continue, but these initiatives focused specifically on saving lives after cardiac arrest occurs. We created new ways to distribute AED devices and educate students about chest compressions.
The Chain of Survival relay debuted at Simon Says Run and appeared at a variety of locations like Girl Scouts camp and a Philadelphia Union game. Students are divided into teams and required to complete three steps in the chain of survival – 911, CPR and AED. The race takes about five minutes. Saving lives is serious business. Learning how to do it can be fun.
GotAED was launched in 2017 after Simon’s Heart was unable to fulfill all of the requests for AED donations. The organization was surprised to learn how many groups seeking an AED device would give up when grants were not available (and there aren’t many grants). In an effort to facilitate the placement of more AEDs, our crowdfunding site was born. Now, within minutes, any youth related organization can start a campaign for a fixed (and really low) price and begin soliciting donations. Upon fulfillment, an AED and cabinet are shipped directly to the facility. To date, fifty AED devices have been sent to venues in 15 states.
The CPR Jukebox debuted at MusikFest in 2019. It was wildly successful. To appreciate this statement, you must understand that Simon’s Heart has always been the loneliest booth at any event. People do not want to contemplate their child’s mortality or learn about CPR. With a ten foot inflatable, kick balls and a 100+ song playlist, hundreds of children and families picked a song and pushed on a ball. Learning hands-only CPR was a byproduct of having fun. In May 2020, in the midst of the quarantine, Simon’s Heart hosted a virtual CPR Jukebox Marathon. For 12 hours, 144 students from four countries pushed for ten minutes on a ball. It was hosted by local celebrities and raised $5,000.
Investing in the Mission
The first fundraiser was held in January 2006 at Normandy Farm. It raised over $100,000. It would become known as Simon’s Soiree. Except for three years during the recession, Simon’s Soiree continues and generates 60% of the organization’s revenue. During the recession, the event became Simon’s Day, a day of entertainment and activities for families. It was hosted at the Ambler Theater. Simon Says Run ran from 2014 – 2017. It was a 5K and family walk. Simon Says Golf was introduced in 2017 and continues to this day. Simon’s Heart has an annual budget of $500,000. Through events, partnerships, grants and donations, it will continue checking hearts and saving lives.