Remarks – BBYO International Convention

This was one of the most special presentations to date. We shared our story with 1,800 students from around the world and then introduced them to Dana Vollmer. The day, known as Stand UP Day, is dedicated to community service. All of the students learned CPR and then taught it to middle school students. The setting was Kylie Shea’s school in Texas. A few years ago, Kylie went into sudden cardiac arrest.

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I remember it like it was yesterday. I couldn’t wait to get to the conference to reconnect with old friends and make new ones. We stayed up all night long talking and doing other things that may not be suitable to discuss this morning. We woke up way too early the next morning and had to listen to some guy speak. Flash forward 25 years. Hi. I’m that guy. Sorry.

So this morning, I want to talk to you about two of most significant events in my life. The first was the BBYO March of the Living. The second was the death of my son, Simon. High school is an interesting time. We try to lead. We do alot of following. Social life is #1 and getting into college is #2, or visa versa. In short, it’s all about us.

In 1988, I went on the inaugural March of the Living. I gathered with 1500 Jewish students from around the world to travel to Hungary, Poland and Israel. To this day, I remember walking through Majdanek, a camp that was largely undisturbed. There were barracks filled with shoes and uniforms. There were crematoria filled with ashes. At that instant, my outlook changed.

I always embraced being Jewish. However, after this experience, I accepted the responsibility and burden of being Jewish. I realized that world was much bigger than me and that I belonged to something special.

As you travel through your young Jewish lives, I hope you that you’ll gather as many experiences as you can, and seek out challenging and rich opportunities.

The second event was the death of my son, Simon. Simon was a seemingly healthy three month old boy. One day, he didn’t wake up from his nap. Following his death, we got our hearts checked and my wife discovered a heart condition.

That condition, Long QT Syndrome, is responsible for up to 15% of all SIDS deaths. We learned that sudden cardiac arrest is not just an adult thing. It takes the lives of thousands of children every year. It is the #1 cause of death of student athletes.

We created Simon’s Fund to raise awareness about SCA in students because we wanted to spare other families from traveling down our tragic road. Simon’s Fund provides free heart screenings to students. We’ve checked 8000 plus hearts; 60 kids have discovered heart conditions.

We’ve also gotten really involved in advocacy through the SCA Prevention Act which protect student athletes from SCA. We helped to get the law passed in PA and have been working with lawmakers in other states too. To date, it has been passed in two states and introduced in seven others.

Today, you are going to learn about another way to combat sudden cardiac arrest as you learn CPR. At the end of the day, you’ll know how to save a life, and we all know what the Talmud says about saving JUST ONE life. I really look forward to participating in Stand UP Day with all of you.

These two events changed my life. You can even say they rocked my world but here’s how it all ties together. As Jewish kids, we learn so much about adversity. When I was here so long ago, I cared about the Holocaust and equality but I didn’t really care about the heart. It doesn’t matter because experiences like BBYO that give us the tools to take up causes along the way and empower us to overcome any type of adversity. In fact, every year at the Sedar we say “everyone has their own Egypt.” Remember this as you travel through life.

The next speaker has also overcome adversity. Dana Vollmer was diagnosed with a heart condition in her early teens. This almost ended her swimming career. That would have been tragic because she went on to win four Olympic gold medals and capture the world record in 100m butterfly.

Last year, Simon’s Fund recognized Dana with the Protect this Heart Award. This past year, we worked together on a Speedo swim cap project to raise money and awareness about SCA in students.

Dana helped design this. What do you think?

I am so happy that you get to hear Dana’s inspiring story. Please help me welcome, Dana Vollmer.

Jake Berman

“I attended a heart screening at Colonial Middle School when I was ten. I was in the marching band and liked to hike and rock climb. I was diagnosed with Wolff Parkinson White Syndrome. After my procedure, I kept doing the same things.”

Whitney Jones

Whitney’s commitment to heart health advocacy began at 10 years old when she and her mother, Rayna, were diagnosed with Long QT Syndrome during a Simon’s Heart screening at Downingtown West High School. Despite the diagnosis, Whitney pursued her passion for cheerleading and continued to thrive in the sport through her college years at St. Joseph’s University. After graduating, Whitney joined Stryker Instruments as the Senior Specialist for Off-Site Meeting and Events, where she skillfully orchestrates events that promote health and medical innovation. Further extending her impact, Whitney is an active member of the Simon’s Heart Young Professionals Committee, while her mother Rayna contributes her expertise on the Board of Directors.

Katie Asper

“I attended a heart screening at Upper Dublin High School when I was ten. I played soccer. I was diagnosed with Wolff Parkinson White Syndrome and had an ablation to fix the problem. I attend Temple University.”

Matthew Green

“I attended a heart screening in Mason, Ohio, when I was ten. I participated in baseball, basketball, and diving. I was diagnosed with an atrial septal defect. I had surgery to repair the hole and started wearing a protective shirt during activity. I am graduating from Miami University.”

Valerie Krawitz

“I attended a heart screening at Colonial Middle School when I was ten. I played baseball, soccer, and track. I was diagnosed with Long QT Syndrome and an atrial septal defect. I had heart surgery to repair the hole and I take medicine for the Long QT. I can’t play competitive sports like I once did, but found other activities. Next year, I’m attending Penn State University.”

Drew Harrington

“I attended a heart screening at Radnor High School when I was ten. I played lacrosse, tennis, and basketball. I was diagnosed with Wolff Parkinson White Syndrome. I used to feel my heart beat really fast, but just assumed it was fine. Coincidentally, on Simon’s 7th birthday, I had a procedure called an ablation. Today, my heart is fine and I attend the University of Richmond.”

Alaysia Keeley

“I attended a heart screening at Norristown High School when I was ten. I played softball and enjoyed going to the mall with my friends. I was diagnosed with Long QT Syndrome. I had to stop playing sports and drinking soda. Now, I take medication and live a normal life.”

Kyle McCabe

“I attended a heart screening at Norristown High School when I was ten. I played baseball, basketball, and football. I was diagnosed with Long QT Syndrome. I stopped playing sports to protect my heart, but I still manage to have fun.”

Melissa Fair

“I attended a heart screening at Colonial Middle School when I was ten. I loved dancing and hanging out with my friends. I was diagnosed with Partial Anomolous Pulmonary Venous Return and Atrial Septal Defect. The doctor told me that my life would have been cut short if I hadn’t found out. I’m graduating from Penn State University this year.”

Zach Steffens

“I attended a heart screening at Stillman Elementary School in Tenafly, N.J., when I was fourteen years old. I love running, Tae Kwon Do, and Armenian cultural dancing. I was diagnosed with a rare congenital defect called ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery). I had open-heart surgery and recovered well. One month later, I suffered a cardiac arrest and an automated external defibrillator (AED) saved my life. I now have an implantable cardioverter defibrillator (ICD) and am healthier than ever. I will be attending The College of New Jersey and majoring in biomedical engineering.”

Annie FitzPatrick

“I went into sudden cardiac arrest at a local convenience store when I was 19 years old. My heart stopped and the only reason I am alive today is because an AED was readily available. I was diagnosed with Long QT Syndrome shortly after and was introduced to Darren and Phyllis with Simon’s Heart. I have been an active volunteer ever since. I went on to graduate Cum Laude from Drexel University with a double major in Business Analytics and Marketing and now work at a leading chemical company.”

Maeve Quinn

"I had a sudden cardiac arrest during softball tryouts at my high school. I was 15 years old. Thanks to the quick thinking of my coach and athletic trainer, they started doing CPR and using an AED immediately. This helped save my life. I had an implantable defibrillator surgically placed in case this happens again. I volunteer to educate people on the importance of screenings, learning CPR and the use of AEDs. Anyone can save a life like mine! I am planning on going to college for nursing."