A national outreach program designed to engage the public in sudden cardiac death prevention through the Take 5 to Stay Alive toolkit that puts a variety of primary and secondary prevention resources at their fingertips.
A collaborative event that is a launching pad for local champions to find the resources and inspiration to create community prevention programs that become part of a national movement. PHW members, advocates and medical experts on youth SCA join together from across the country for the latest medical updates, hands-on learning and empowering fellowship. The agenda includes a distinguished panel of physicians, latest updates on cardiac health, best-practices for Public Access Defibrillation (PAD) programs and cardiac screenings, genetics, legislation, motivational speakers, and a Call-to-Action.
National media/outreach campaigns that raise awareness of the incidence of SCA in youth and increase recognition that SCA/D can often be prevented. Campaigns typically focus on outreach during Heart Month (February), CPR/AED Awareness Week (June) and Sudden Cardiac Arrest Awareness Month (October), however, PHW distributes thousands of free or low-cost educational materials throughout the year.
Education campaigns about primary prevention strategies, such as highlighting the warning signs and risk factors of a heart condition and advocating for early detection through heart screenings with electrocardiograms (ECGs) and echocardiograms.
Increasing public knowledge about secondary prevention strategies with campaigns that highlight the cardiac chain of survival, which calls for the widespread availability of properly maintained automated external defibrillators (AEDs) that are publically accessible at all schools, sporting events/ practices and youth organizations; critical CPR/AED training; and the importance of emergency preparedness, including developing a written and well-practiced cardiac emergency response plan (CERP).
In the absence of a systematic and mandatory National Registry of Sudden Cardiac Arrest (SCA) and Sudden Cardiac Death (SCD) in Children and Young Adults, Parent Heart Watch maintains a database of SCA and SCD in youth occurrences to provide insight as to their true extent in youth as well as survival trends. Collecting data on the incidence of sudden cardiac arrest and death will drive change in prevention best practices.
Advocating for SCA/D prevention in youth in education, sports and medical communities by having a voice at national conferences and participating in and perpetuating national coalitions and partnerships.
Maximizing national PHW initiatives by filtering efforts and resources down to state and local levels. S.T.A.R.S. Coordinators serve as liaisons at the state level for the dissemination of PHW approved materials and to collect information about the various activities of PHW members within their state. They also represent PHW in statewide initiatives, legislative issues, advocacy campaigns, and local media contacts.
Two Hearts Are Stronger Than One
Connected by Hearts provides education, support and networking to young survivors of sudden cardiac arrest and those living with heart conditions. It was founded in 2011 by a group of young people who wanted to share their experiences with each other.
We all come to Connected by Hearts with different stories. Some of us have experienced sudden cardiac arrest (SCA), while others have been diagnosed with an at-risk heart condition but have not experienced SCA. Some of us have had surgery for our condition, while others are living with our condition with the assistance of an implantable cardioverter defibrillator (ICD) or pacemaker.
The members of Parent Heart Watch know how difficult it can be to deal with news that you are not expecting. In fact, the reason our parent members actively promote SCA prevention is to help protect families from the pain and hardship they experienced as a result of losing their child. We recognize that while many young people have survived SCA, the experience might also have provoked feelings of anger, sadness, isolation or even fear in dealing with the reality of their condition, medical procedures or an altered lifestyle. PHW hopes to offer emotional support for youth and families who must now navigate this heart experience.
If you would like to connect with this community, please visit the Connected By Hearts website, download the Connected by Hearts flyer or email us.
An ongoing effort to support the creation and perpetuation of local primary and secondary prevention programs championed by Parent Heart Watch Members.