Disease, Disorders, Medical Disciplines

Parent Heart Watch

Protecting Youth from Sudden Cardiac Arrest

aka PHW   |   Wilmington, DE   |  www.parentheartwatch.org

Mission

Parent Heart Watch is the national voice solely dedicated to protecting youth from Sudden Cardiac Arrest (SCA) and preventable Sudden Cardiac Death (SCD). Parent Heart Watch leads and empowers others by sharing information, educating and advocating for change.

Ruling year info

2006

Executive Director

Martha Lopez Anderson

Main address

2624 Whitman Drive

Wilmington, DE 19808 USA

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EIN

11-3761392

Cause area (NTEE code) info

Heart and Circulatory System (G43)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Education and Outreach

PHW is the national voice solely focusing on sudden cardiac arrest (SCA) in youth. One of our major program areas is education and outreach because we know that SCA in youth can often be prevented.

Each year, PHW distributes thousands of educational resources at no charge to the public. Education and outreach is paramount in the work we do, it makes up approximately 50% of the PHW annual budget, not including the annual conference. These costs are comprised of the design, printing, shipping and postage of all materials, website and social media management and general media outreach.

Population(s) Served
Children and youth (0-19 years)

A collaborative live 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

Population(s) Served
Children and youth (0-19 years)
Adults
Budget
$75,000

PHW members are advocates in their own communities. Much of our work, at both the national and local level, is focused on two prevention strategies:

Primary Prevention supports the early detection of heart conditions through low cost or free community cardiac screenings of youth which include, but is not limited to, a painless and non-invasive electrocardiogram (ECG). Along with a comprehensive physical examination, family history and attentiveness to warning signs and symptoms, the addition of an ECG is critical to help detect the presence of a heart condition which might not otherwise be evident. We work with medical champions to conduct screenings at schools, community centers, and hospitals.

Secondary Prevention encompasses being prepared in case of a cardiac emergency. This includes donating and placing Automated External Defibrillators (AEDs) in schools and other youth-serving organizations, providing CPR and AED training, and working with youth serving organizations to develop a written and well-practiced Cardiac Emergency Response Plan.

Population(s) Served
Children and youth (0-19 years)

A national outreach program designed to engage the public in sudden cardiac arrest prevention through the Take 5 to Stay Alive toolkit that puts a variety of primary and secondary prevention resources at their fingertips

Population(s) Served
Children and youth (0-19 years)

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

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Charting impact

SOURCE: Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

What is the organization aiming to accomplish?

Parent Heart Watch (PHW) seeks to change systemic protocol and policy on how communities prepare for, respond to and prevent SCA in youth. PHW is singular in its role as the only national voice dedicated to the prevention of SCA in youth. The mission of our health and human services nonprofit 501(c)(3) is to lead and empower others through educating and advocating for change, with a vision to eliminate preventable deaths and disabilities from SCA in youth by 2030. Our program drives the national dialogue on youth SCA prevention, enabling PHW leadership to motivate parent, education, sports and medical communities to pursue and evolve better prevention policy and protocol. Studies definitively show that robust cardiac risk assessments, preventative heart screenings, CPR training, AED placement and cardiac emergency response plans save lives. What’s lacking is education and advocacy to motivate stakeholders to implement these prevention strategies.

Operation Prevention is our comprehensive program to advance sudden cardiac arrest prevention in youth. Our national movement is a dynamic and transformative platform that strives to Create a Culture of Prevention by: • cultivating prevention champions and empowering them to create life-saving community programs and advance statewide advocacy, • architecting collaborations with national school, sport and medical associations to promote more robust SCA prevention protocol, • equipping parents and the general public with critical tools to protect young hearts. Many of our champions are parents who have lost a child to sudden cardiac arrest, or have a surviving child living with a heart condition, and have chosen to marshal their personal experience to protect other families from this catastrophic event. Joined by medical practitioners, allied health professionals and other prevention advocates, we are advancing models for change that empower communities to prevent a tragedy that could be a heartbeat away. These champions drive our board leadership, as well as our medical advisory committee, which is comprised of veteran and published practitioners advancing SCA prevention practice. The question is often asked: If we can prevent young people from dying, why aren’t we? Our answer is: Together We Will.

Because there is no national standard for prevention of SCA in youth, our outreach programs exemplify innovative and effective working models that provide real-time solutions to fill this gap in preventative heart practice and protocol where kids live, learn and play. Annual National Heart to Heart This coalition of regional champions meets to review advances in research, best practice models for early detection cardiac screenings, AED and cardiac emergency response plan installation, and skills augmentation to develop community programs. Conference speakers address healthcare innovation, new studies, primary healthcare intervention, and pilot research projects. The event inspires and perpetuates public education programs that have become models for change across the country, which have impacted hundreds of thousands of youth, parents, educators, coaches and allied health professionals. Overall, the event has been a launching pad for thousands of champions advocating for youth SCA prevention in 39 states. Get Charged Up! As a co-author with the American Heart Association and 12 national health and safety organizations of the Cardiac Emergency Response Plan for Schools policy statement, template and implementation resources, this program models the importance of AEDs and Cardiac Emergency Response Plans (CERP) in schools in the absence of a national mandate to protect school campuses. PHW donates an AED to schools that work to implement a CERP. Educational Advocacy We educate stakeholders on the critical need for better prevention practices and protocol. We forge meaningful partnerships with and make presentations to dozens of professional medical, education and sports societies. As an information storehouse, we provide one-on-one guidance with current and potential SCA prevention advocates, as well as personally responding to hundreds of queries annually, ranging from families who have lost a child to SCA to media and legislators seeking information. Outreach Campaign Take the Prevention Promise is a national call-to-action campaign that educates communities and equips them with SCA prevention tools and resources, including free educational materials such as flyers, posters and videos, provided to hundreds of thousands annually at no charge. We maximize our outreach through a dedicated social media campaign, with daily reporting of youth stricken as well as the latest news and resources on best practices and prevention protocol. We also have an education-focused website with accessible SCA prevention tools and resources, with the latest news, blogs, legislation and research on SCA in youth, plus a directory of youth heart screening programs and CPR/AED training and AED placement programs across the country. We have also launched a Call Push Shock campaign in collaboration with dozens of champions to leverage research-tested messaging shown to motivate bystander intervention during a SCA emergency, which is critical to survival.

According to the American Heart Association, as many as 16,000 are stricken annually. But the fact is, the AHA didn’t start collecting data on SCA in youth until the advent of Parent Heart Watch. AHA Heart Disease & Stroke Statistics Reports dating back to 2006 merely suggest an estimate of out-of-hospital cardiac arrest in youth under 18 as high as 14,500. As our national movement to protect young hearts was founded in 2005 and gained momentum, attention on this misunderstood tragedy triggered more intentional reporting and research, several studies for which Parent Heart Watch has participated in. Over the years, AHA reports have shown a fluctuation in youth stricken, from 16,000 in 2009 to 12,500 in 2013 to 9,500 in 2014 and around 7,000 in recent reports. Given Parent Heart Watch is the only national voice solely dedicated to the prevention of SCA in youth, and we’ve been driving this dialogue for 15 years, we take pride in this evidence that our passionate commitment to protecting young hearts has literally saved lives. Further evidence of our progress will be measured through our ability to: • Represent this issue at change-making levels We connect annually with policy makers that set standards in youth care, gatekeepers of primary care delivery, changemakers for mandatory SCA reporting, professional societies educating and advocating for SCA survival, and leadership associations in school communities • Advance the update of the outdated 2012 American Academy of Pediatrics SCA policy statement and Bright Futures protocol • Co-author articles/research to change policy/practices • Generate content on national constituent websites/social media • Catalyze SCA prevention collaborations, including CME/CE development and participation in Get Charged Up! to champion AEDs/Cardiac Emergency Response Plans in schools • Measure the reach and scope of our outreach through digital analytics and distribution of materials One of the biggest issues we face is the lack of accurate data on youth lost, which is exacerbated by cause-of-death misdiagnoses. As the catalyst of the Sudden Death In the Young Registry, Parent Heart Watch now provides ongoing leadership to this research project to affect accurate post-mortem reporting. The adoption of this protocol will be a significant measure of our progress. Another indicator of our progress will be the published outcomes of various researchers we are partnering with to produce evidence-based data that will support change.

Examples of what this coalition has collectively facilitated include: • Hosted 15 annual conferences &2 CMEs featuring inter/nationally renowned speakers • Advocated for passage of 40 SCA-related legislation in 24 states • Placed 7,300 AEDs in schools and youth centers • Trained 501,000+ to use CPR/AED • Provided ~700,000 free/low-cost youth heart screenings • Distributed 1000s of free educational resources • Featured in news reports, including The Today Show, 60 Minutes Sports • Co-authored the AHA Cardiac Emergency Response Plans for Schools (CERPs) • Successfully implemented CERPs in 77 schools/30 states through Get Charged Up!, now protecting 81,000+ hearts. For 47% of schools, this was their first AED; 79% did not have a dedicated CERP, and 30% reported having had an SCA on their campus. • Catalyzed establishment of the Sudden Death in the Young Registry, an ongoing collaboration between the National Institutes for Health and Centers for Disease Control to affect accurate post-mortem reporting of SCA in youth • Partnered on ample research to establish best practices for SCA prevention, including informing various studies with our own national database of SCA in youth • Served as inaugural members of the Cardiac Safety Research Consortium’s Think Tank, and partner on current effort to establish national SCA screening data warehouse to validate the efficacy of standardized heart screening for youth. • Co-authored many industry expert articles to illuminate the critical need to establish prevention protocol • Earned a seat at the table representing SCA prevention in youth with national policy-makers, including the National Task Force for Cardiac Emergency Response Plans in Schools, American Academy of Pediatrics, American Academy of Nurse Practitioners, National Athletic Trainers’ Association/Youth Sports Safety Alliance, Cardiac Safety Research Consortium, National Cardiac Arrest Collaborative, EMS Agenda 2050, Cardiac Arrest Survival Summit, U.S. Heart Rescue (mandatory SCA reporting), National Fire Protection Association (controls Life Safety Code, where we seek to add AEDs), School-Based Health Alliance, AASA, SHAPE America, NASN, NATA/Youth Sports Safety Alliance What’s next is to continue to advance the impact of our programs and advocacy, as well as launch new initiatives, including the development of a CNE on cardiac emergency response planning for school health professionals. As we move towards our vision to eliminate death and disability from preventable sudden cardiac arrest in youth by 2030, we are embarking on The Next Decade of Prevention.

Financials

Parent Heart Watch
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Operations

The people, governance practices, and partners that make the organization tick.

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Parent Heart Watch

Board of directors
as of 3/30/2020
SOURCE: Self-reported by organization
Board co-chair

Karen Acompora

Louis Acompora Memorial Foundation

Term: 2018 - 2022


Board co-chair

Steve Tannenbaum

Horowitz, Tannenbaum & Silver, P.C

Term: 2018 - 2023

Melinda Murray

JetBlue Airways

Stewart Krug

Matthew Krug Foundation

Jim Markisohn

Utility Power Solutions Anixter, Inc.

Ashlee Valavala

Leukemia and Lymphoma Society

Scott Stephens

Scott Stephens & Associates, Inc.

Mark Peters

School Health

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Keywords

sudden cardiac arrest in youth, sudden cardiac death in youth, heart defects, cardiomyopathy, long qt, childrens heart disease, congenital heart defects