How Project ADAM Got Started

Hi and welcome to our second blog! I hope that you had a chance to read our first blog, dedicated to Adam Lemel. Now it’s time to let you know how we got started. We lost Adam in January 1999. In the months after Adam’s death, several high school athletes in Wisconsin, Adam’s home state, succumbed to sudden cardiac arrest (SCA). By November of that year, Dr. Berger, a pediatric cardiologist at Children’s Hospital in Milwaukee, was convinced that something needed to be done. He had reached out to Adam’s family in an effort to ensure that Adam’s brothers did not evidence the same cardiac condition, arrhythmogenic right ventricular dysplasia (ARVD) that had caused Adam’s cardiac arrest. ARVD is a type of cardiomyopathy that can often evade routine detection. Thankfully, Adam’s brothers were spared this diagnosis. The Lemel family realized, however, that there were still others in their community with cardiac diagnoses that predispose to SCA. They did not want other families to suffer as they did. They were willing to turn their loss into hope. Together with Dr. Berger, they created Project Adam so that in the event of a cardiac arrest in a school setting, those present would be prepared to respond.

Dr. Berger was kind enough to speak with me recently and share his reflections about that pivotal year and the events that led up to the creation of Project Adam. By the end of 1999, it was painfully clear to Dr. Berger that “it didn’t make sense to stand by and do nothing” to prevent SCA. He realized that there would need to be a two pronged approach to both prevent SCA whenever and however possible and also to be able to intervene when it occurred. He knew that the key to survival was timely CPR and the use of automated external defibrillators (AEDs). It was just not realistic to expect EMS to arrive on the scene and initiate life-saving measures within the critical 5 minutes necessary to preserve life and prevent tissue damage. It is imperative that bystanders immediately call 911, know and perform CPR, be cognizant of the location of the AED and be willing to use it appropriately and without fear of doing harm.* Thus the concept of having a cardiac emergency response plan (CERP) in schools became the focus of Project Adam. On any given day up to 20% of a community can be found on a school’s campus. And while schools have primarily been the focus of Project Adam’s efforts, several affiliates have advocated for AEDs in other community locations including parks and rec centers. As of this writing 15 states require schools to have AEDs and all 50 states have legislation regarding AEDs in public gathering locales. Project Adam continues to serve as a resource for communities in the United States working to save lives through education and advocacy.

Thus, what started out as a local effort to prevent sudden cardiac death became a national movement. Project Adam currently has 33 affiliates in 28 states. Dr. Berger attributes this significant growth to the fact that it started as a grassroots effort in a community of people willing to extend themselves in service to their neighbor. Dr. Berger hopes that one day there will be an affiliate in every state and that “anyone who wants to be involved will be included.”  And he envisions a day when we will achieve a 100% survival rate. Seeing as Dr. Stuart’s mantra is “don’t take no for an answer” it certainly seems possible. As our conversation winded down, I realized that he’s the mentor that everyone needs. I felt envious of the cardiologists that trained under him. Before we ended our meeting I (somewhat selfishly) asked for what piece of advice he would give to his trainees if limited to one tidbit of wisdom. “Go with your heart” he replied without hesitation. Sounds like wise counsel for us all.

*In order for someone to survive a cardiac arrest, immediate action must be taken. The American Heart Association promotes the words call, push, shock to remember in the event of a cardiac emergency: call 911, start CPR and apply an automated external defibrillator (AED).

Submitted by:

Christa Miliaresis, MD, FAAP, FACC

NYMC Department of Pediatrics, Maria Fareri Children's Hospital, Medical Director, New York Affiliate of Project ADAM