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.

Notes from the nonprofit

Parent Heart Watch has become an engaging national movement. It educates and advocates. It cultivates and inspires. It’s a coalition of prevention champions driving the demand for change. It shares resources and architects collaborations to make prevention a priority. Sudden cardiac arrest IS preventable, but it doesn’t happen by chance. And no one should take a chance with a child’s heart. Together, we are cultivating the next generation of live savers so that we can realize our vision to eliminate preventable deaths and disabilities from SCA in youth by 2030. Won't you join us in our mission to protect young hearts?

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

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

SOURCE: Self-reported by organization

The number of youth lost to sudden cardiac arrest equates to nearly one every hour, each day, year after year. It’s the #1 killer of student athletes and the leading cause of death on school campuses. The real tragedy is that the vast majority of these deaths could've been prevented. 1 in 300 youth has an undetected heart condition. And yet, the standard of care lacks proven prevention protocol to protect young hearts, evidenced by studies that show average physicals miss up to 90% of youth at risk, and once stricken the survival rate is barely 10%, where it has stagnated for three decades. As the only national organization dedicated to SCA prevention in youth, this is a singular opportunity to support an initiative to elevate a standard of care that could save thousands of lives annually. Unlike other public health crises that are still searching for solutions to remedy disease, we have the ability RIGHT NOW to prevent SCA from taking one more life—but that doesn't happen by chance.

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

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
Adults

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

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

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of groups/individuals benefiting from tools/resources/education materials provided

This metric is no longer tracked.
Totals By Year
Population(s) Served

Young adults, Adolescents, Children, Preteens

Related Program

Education and Outreach

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

We provide free Sudden Cardiac Arrest prevention resources to home, school, athletic and medical communities across the country, with additional online resources via our website, videos &social media.

Number of new programs/program sites

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adolescents, Children, Preteens, Young adults

Related Program

Best Practice Models - Primary and Secondary Prevention

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

We annually empower champions to launch new SCA prevention programs that become models for change across the country, underpinning a national movement to standardize prevention protocol.

Number of briefings or presentations held

This metric is no longer tracked.
Totals By Year
Related Program

Education and Outreach

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

Context Notes

PHW travels the country speaking to thousands of advocates, educators, medical and allied health professionals. During the pandemic, these presentations are done virtually.

Total revenue earned to support advocacy efforts

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Holding steady

Context Notes

Parent Heart Watch aggressively seeks donations, sponsorships and grants each year and has consistently met its budget goals for 15 years, despite ever-changing priorities in the funding marketplace.

Total number of screenings held

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adolescents, Children, Preteens, Young adults

Related Program

Best Practice Models - Primary and Secondary Prevention

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

PHW empowers our members to provide free or low-cost heart screenings to youth and young adults that include an ECG and often an echocardiogram. Total screened to date is 749,141.

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Adolescents, Children, Preteens

Related Program

Best Practice Models - Primary and Secondary Prevention

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

PHW empowers its members to provide CPR/AED training or demonstrations prepare anyone to save the life of a sudden cardiac arrest victim. Total trained to date is 582,009.

Number of health/hygiene product and/or tools of care (mosquito nets, soap, etc.) administered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Age groups

Related Program

Best Practice Models - Primary and Secondary Prevention

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Parent Heart Watch and our members place AEDs wherever youth congregate because SCA is the leading cause of death on school campuses. Total placed to date are 7,641.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

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
Across the last 15 years, Heart to Heart has become the national venue hosting a coalition of prevention champions representing 40 states who convene each year to be empowered and equipped to advance community programs that drive the demand for change. These programs impact hundreds of thousands of youth, parents, educators, coaches, medical and allied health professionals. Conference speakers focus on the latest advances in research and medicine, best practice models for early detection cardiac risk assessment and screening, AED and cardiac emergency response plan installation and skill set augmentation for champions to develop and sustain community-based outreach and prevention programs. Sessions will address innovation, new studies, data capture, intervention, training, policy-making, advocacy and collaboration.

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. A free toolkit with templates and resources is also available to any school or facility.

Educational Advocacy
We educate change makers in school, sports and medical communities on the critical need for better SCA prevention practices and protocol anywhere youth congregate. Through committed advocacy we forge meaningful partnerships that inform thousands of professionals across the country. We track youth lost to sudden cardiac arrest, which was the underpinning of our ability to catalyze the national Sudden Death in the Young Registry. We partner on research studies to affect policy change and co-author statements and resources to highlight the critical need to elevate prevention standards.

Take the Prevention Promise
National call-to-action campaigns educate communities and equip hundreds of thousands with free SCA prevention resources for families, schools, teams, community centers, workplaces and medical practices. Through social media, printed and digital tools, articles, videos and more, we mobilize the next generation of life savers to recognize the incidence of SCA in youth and demand comprehensive cardiac risk assessment and cardiac preparedness to protect young hearts in youth communities.

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 thousands 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 94 schools/30 states through Get Charged Up!, now protecting 90,000+ hearts. For 41% of schools, this was their first AED; 73% did not have a dedicated CERP, and 32% 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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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Parent Heart Watch

Board of directors
as of 1/28/2021
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

Karen Acompora

Louis J. Acompora Memorial Foundation

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

Organizational demographics

SOURCE: Self-reported; last updated 10/08/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data