Published in the Huffington Post
Let’s be honest. If you clicked on this post, you did so because you recognized the number in the title. I borrowed it from Rent. Love that musical, and especially the song:
“525,600 minutes — how do you measure, measure a year? In daylights, in sunsets, in midnights, in cups of coffee… In 525,600 minutes — how do you measure a year in the life?”
The answer in the song is seasons of love. At Simon’s Fund, our answer is student lives.
Ten years ago, after losing my 3 month old son, Simon, we charted a path to raise awareness about sudden cardiac arrest and death in children.
Following his death, I was diagnosed with a heart condition called Long QT Syndrome. It’s a potentially fatal arrhythmia that gets discovered with a simple and inexpensive test known as an electrocardiogram (ECG or EKG, depending on your part of the world).
Unfortunately, I never got that test earlier in life. Had I, there is a pretty good chance that we would have known about my condition, and would’ve looked out for it in my kids. Quite possibly, Simon would still be here today.
My condition, and several others, are genetic. We can pass them down to our children. These conditions are the reason that sudden cardiac arrest is the #1 cause of death of student athletes. They take the lives of thousands of kids every year. This is why we decided to create a screening program to look for these conditions, and gather data to learn about kids’ hearts.
When we first started Simon’s Fund, our measure of a year was kids screened and conditions found. You can “meet” some of these kids, and learn about their stories on our website. The one thing they all have in common is that they thought everything was fine.
After ten years, we’ve provided free heart screenings to over 11,000 kids, helping about 100 discover heart conditions. This has been incredibly productive and gratifying, and while we continue our screening efforts, we have found new ways to raise awareness.
In May 2012, Simon’s Fund worked with Representative Mike Vereb to pass the first law in the country to protect student athletes from sudden cardiac arrest. The Sudden Cardiac Arrest Prevention Act has three main components. First, parents must read and sign a form prior to their child participating in interscholastic sports. Second, coaches must take a course to learn about the warning signs of conditions that lead to sudden cardiac arrest (e.g. fainting or seizure during exercise). Third, coaches must remove players who exhibit symptoms and those players may not return until cleared by a licensed medical professional.
In three years since the initial passage, Simon’s Fund has worked with lawmakers and organizations in eight states to get similar laws passed. It is currently pending in a few others. A couple of states skipped the legislative process and their state athletic associations adopted the guidelines into their bylaws. Our measure changed again. As a result of this Act, over 2 million students, their parents and coaches learned that sudden cardiac arrest isn’t just an adult thing.
But it gets better. Earlier this year, the National Federation of State High Schools Association (NFHS), added sudden cardiac arrest education to its platform. The Association works with 1.5 million coaches around the country. Now, these coaches have access to life-saving information in our training video.
In 2005, my year was measured by the loss of one son. However, ten years later, it can be measured by one job posting I saw in California for a high school coach that requires sudden cardiac arrest certification. It can be measured by one form I signed so my daughter can play interscholastic sports in Pennsylvania. It can be measured by 20,000 coaches watching our training video at NFHSlearn last month. It can also be measured by millions of kids and adults, who recognize the warning signs of cardiac arrest, and know how to prevent the sudden death of children.
That’s the real meaning behind the musical, Rent, and Simon’s story. Tragedy is not the end, but a chance at a new beginning. Tragedy will define a particular moment or period in our life, but from that instant, we can change the narrative and our metric. From this day forward, how will you measure a year?
