Parent Heart watch has long advocated for a national registry that would count all Sudden Cardiac Deaths in youth, to provide evidence that these tragedies are not rare events. The tenacious efforts of members to educate and advocate for a registry influenced heightened federal interest, which led to the 2012 establishment of the Sudden Death in Young Case Registry—a partnership between NIH, CDC and the National Center for Child Death Review, with PHW on the Registry Advisory Committee.

Parent Heart Watch has been a driving force in our combined efforts to educate communities on the importance that early recognition of sudden cardiac arrest (SCA) and properly performed CPR has on our ability to save lives. The unique leadership role they have taken to protect youth from SCA has raised awareness of its true incidence among our children and has advanced the dialogue about the critical need to address secondary prevention strategies anywhere youth congregate.

Parent Heart Watch sets the bar for SCA prevention in youth. We get the support we need to make change. Together we go to great lengths to protect our children. We yell from the mountain tops that our children need to be safe, screened and have easy access to AEDs. Parent Heart Watch is the leader, and we all follow the leader.

The CSRC launched an initiative two years ago to establish a sustainable national resource related to prevention of SCA/SCDY. Parent Heart Watch has been a key collaborative partner from the inception of this initiative, given their national presence and knowledge and commitment to SCA/SCDY prevention. PHW continues to take a leadership role in our efforts to create a national screening standard. They are instrumental in leveraging input from community screening foundations, especially as we embark on a landmark pilot study to unify screening data collection practices and establish what is normal in ECG interpretation in youth.

Parent Heart Watch was the reason I started KEVS Foundation. I could’ve grieved and hibernated for the rest of my life, or make sure I do everything possible in my child’s name so that it doesn’t happen to another family. Instead of recreating the wheel, I continue to build on their idea sharing and best practices. Parent Heart Watch provides the framework with great mentors—it’s a launching pad.