A Simon's Heart Primer -

Posted on June 15, 2015 Categories: Uncategorized

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.

For a quick overview of our history, look at the timeline. As you learn more about our journey, one thing should stand out – everything we do is rooted in science.

The Beginning – Tragedy and Uncertainty

Simon’s Fund (a.k.a Simon’s Heart) began sometime in 2005 following the sudden and unexpected death of Simon Sudman. He was a seemingly healthy three-month old. He was average for height and weight. He scored 8 and 9 on the APGAR. He smiled for the first time at 47 days. He died in his sleep forty days later. The Sudmans knew they had to do something. They could focus on the unexpected death of infants. They could focus on improving the lives of children who are born to families without resources (since Simon would have been very comfortable). Friends of the family donated $20,000 to support the cause, whatever it would become.

Curiosity and Direction

The initial hunch was SIDS, but their wise and curious pediatricians told the family to get their hearts checked because “babies just don’t die.” As a result, Phyllis was diagnosed with Long QT Syndrome – an arrhythmia that has been linked to up to 12% of SIDS deaths It is also one of a handful of conditions that can cause children, particularly student athletes to collapse and die. The cause was born – prevent a family from losing a child to a detectable and treatable heart condition.

There are two ways to approach sudden cardiac arrest and death in children. Prevent the condition before it causes harm (primary prevention) or be prepared to help when the harm occurs (secondary prevention). The board felt that primary prevention was less crowded, more challenging and likely more impactful.

The desire was to raise money and fund another organization that was focused on preventing sudden death in children. In 2005, there were two such groups. After some due diligence, we learned that these groups used to be one – there was a falling out. We didn’t want to donate our friends’ money to either group. Hence, Simon’s Fund was born (in 2018, the name was changed to Simon’s Heart).

Our First Program

The first fundraiser was held in January 2006 at Normandy Farm. It raised over $100,000. The first program – a heart screening – was held at the World Cafe Live. We partnered with a cardiologist at CHOP. About eighty kids showed up for a concert and screening. The concept was born.

Why heart screenings? Anecdotally, we know that 1 out of 300 students discover heart conditions at youth heart screenings. Scientifically, we know that a physical exam, medical history and ECG is the most effective way to detect heart conditions. Simon’s Heart co-funded this research with the NCAA.

The first school based heart screening was held at the Colonial School District. Five students discovered heart conditions.

Over the next few years, Simon’s Heart and Dr. Vicki Vetter continued to conduct screenings in partnership with schools. The goal of this relationship was to produce research. Simon’s Heart donated $150,000 to this effort. The research project never got funding and Simon’s Heart wanted to expand the number of physicians and institutions participating in the effort. This “exclusive” relationship came to an end. By 2012, Simon’s Heart was conducting up to six heart screenings a year and had a network of 40+ cardiologist volunteers. This screening model continues to this day.

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

In 2011, NPR ran a story about Zachary Lystedt, a high school football player whose concussion left him paralyzed. The family passed a law in Washington requiring coaches, parents and students to learn about the warning signs. It also required the removal of symptomatic players. With the help of the NFL, within three years, every state adopted a similar law. After studying this law, Simon’s Heart drafted its own and headed to Harrisburg to meet with lawmakers who had lost a student in their District. Representative Mike Vereb learned about Akhir Frazier. Soon thereafter, a bill was introduced. One year later, Governor Corbett, signed the Sudden Cardiac Arrest Prevention Act (Act 59) into law.

The Act has three prongs: (1) parents must read and sign a form prior to their child playing interscholastic sports; (2) coaches must be trained on the warning signs of sudden cardiac arrest; and (3) coaches must remove players who are symptomatic and they can only return after being cleared by a licensed medical professional. Following the passage, Simon’s Heart began reaching out to lawmakers and organizations in other states. To date, fourteen states have enacted similar legislation.

This law opened opportunities to reach coaches and student athletes. The Philadelphia Six filmed a PSA, and a licensing agreement with the National Federation of State High School Associations, made our educational video the primary resource for coach education. It has been used over 1,000,000 times by coaches in all fifty states.

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.

Secondary Prevention

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.

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