Remarks – Soiree 2014

We are so grateful to the almost 400 people that attended Simon’s Soiree, and for the many more who were “with us” from distant places. Here are the remarks that we shared.

We have a few thoughts to share tonight, but we are standing up here really just say thank you.  This organization started because of Simon but it is still here . . . checking hearts and saving lives because of you.  Your volunteer hours.  Your financial investment.  Your commitment to heart screenings and on a personal level, your friendship and support.  We should also note that this event would not have been possible without the work of so many people, but particularly, Jill Deeves (Happy Birthday), Dorothy Wilson and Danielle Nurick.  You can find the names of all of the volunteers in the Program Book.

So again . . . thank you . . . all of you.

Simon would have been nine years old and in the third grade today.  We can never know what Simon would have become. We can only be a part of what he’s left behind.

I remember sitting with some of you in our basement trying to figure out our path, and  capture the essence of our organization . . . in one sentence.  You know, defining our mission.  At that point, we were guessing.  We could only imagine what we might do and what kind of impact we could have. 

 Looking back, we just wanted to create something that would prevent other parents from losing a child to sudden cardiac arrest.

 We could screen students.  We could place AEDs in facilities.  We could fund research. We could educate the community. We could pass laws.   The ideas came easy.   In fact, they have filled a really big imaginary bookshelf for years.

 In that first year, we held one heart screening for 80 kids on the tabletops at the World Café Live.  Last year, we held eight heart screenings in three states.

 During those first few years, we worked with two physicians from one hospital.  Today, we have a network of over forty doctors representing Abington, Jefferson, Einstein, St. Christopher’s, Nemours (DuPont), Lakenau, Bryn Mawr and Temple . . . and many of you are here tonight.

 Partnering with professional athletes was a dream. Launching Screen Across America, a website designed to foster collaboration and raise awareness about the availability of youth heart screenings in this country  . . . .  who even knew that there were other organizations out there?  Getting a law introduced in seven states . . . yeah right.

 At that gathering nine years ago, we just wanted to save the life of one child . . . and hopefully another . . . by raising awareness about conditions that lead to sudden cardiac arrest and death.   That was our aspiration.

 We’ve generated the ideas.  Your generosity has made them a reality.

 We have two big ideas in the works for the coming year.  We want to establish the first Youth EKG Registry in this country so that researchers will have data.  The medical community shouldn’t decide policy about the benefits of heart screenings like the personalities on NFL Primetime decide the best football team.  They need data, and this registry is going to provide that.

We also want to launch an inner city school district screening program for Philadelphia, Wilmington and Camden, where our mobile screening unit will move from high school to high school each week for one year.  We will be able to screen tens of thousands of students.  For many of those students, that may be the best and only check up they’ve ever had.

 So as we continue this journey together, we want to thank you for what we’ve accomplished, and invite you to help us finish the job.  Let’s make heart screenings a standard of care in this country for our children.

 Please continue to volunteer your time. Tell people that sudden cardiac arrest isn’t just an adult thing. Attend our events:  the Soiree, Simon Says Run and our newest event this July, Simon Says Golf. Bring a heart screening to your school.  And please . . . continue to generously invest in our vision. 

 This book started as a tragedy, but together we’ve turned it around.  Every chapter written since is about kids like Kyle and Katie and Melissa and Alaysia and their families who are safer and happier because of Simon’s Fund.

Help us continue the legacy of that little boy, our son, Simon.  Help us check hearts, pass laws and save lives.

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."