Nonprofit Spotlight: The History of Parent Heart Watch

August 31, 2023

​​​​​​

Parent Heart Watch is working tirelessly to move the needle and improve the survival rate of sudden cardiac arrest in youth. They are the only national voice solely dedicated to protecting youth from sudden cardiac arrest and preventable sudden cardiac death. Parent Heart Watch leads and empowers others by sharing information, educating and advocating for change. They are a national organization that leads community nonprofit organizations with lifesaving missions.

Although their story is inspiring and powerful, the organization was started by an incredible group of four moms that were dealing with the unimaginable, the death of one of their children. These mothers lost a seemingly healthy child to sudden cardiac arrest. They came together from different parts of the country to honor their children’s memory. This grassroots movement sprang a national organization that was dedicated to protecting youth from sudden cardiac arrest.

Below is the story of each of those powerful mothers and the child they lost:

Linette Derminer, Ohio
Ken, age 17, had a cardiac arrest and died during football practice on June 7, 2000. He had been diagnosed with a heart murmur at age 13. At his last physical, the family was told that Ken had outgrown his heart murmur, and was never advised to have follow-up testing performed. The cause of the fatal cardiac arrest was found to be an enlarged heart.

Rachel Moyer, Pennsylvania
Greg, age 15, played 10 minutes in a basketball game on December 2, 2000, when he walked into the locker room and went into sudden cardiac arrest. No AED was available, and CPR was not started for more than 10 minutes. Paramedics did not arrive for 30 minutes, at which time his heart began to beat after being shocked with an AED. He was unable to sustain his heartbeat on the ride to hospital. Cause of death was Hypertrophic Cardiomyopathy. The ER doctor told his parents that Greg could probably have been saved with an AED. His family’s mission to place AEDs in all schools began the night of this death.

Sharon Bates, Arizona
Anthony played football since he was nine years old, and participated in other sports throughout his youth. Each year he was required to have a pre-participation physical examination. Not once did this PPE require an exam of his heart. Anthony suffered a sudden cardiac arrest while driving after a light workout at the Kansas State University weight room. Anthony was 20 years old when he died on July 31, 2000 from undiagnosed Hypertrophic Cardiomyopathy. He never complained of symptoms.

Laura Friend, Texas
Sarah was three weeks short of her 13th birthday. On July 14, 2004, Sarah collapsed walking up the stairs at a local waterpark and was not resuscitated. The cause of her untimely death was undetected Hypertrophic Cardiomyopathy. Sarah was in excellent health and never had any symptoms or warning. Other family members have since been tested and were found to have heart defects.

A Series of Events

Here is a timeline of the incredible milestones and accomplishments achieved by Parent Heart Watch:

2005
PHW was founded by Linette Derminer, Rachel Moyer, Sharon Bates and Laura Friend with Medtronic as founding sponsor.

• Inaugural conference held in Las Vegas, NV; attended by 40 families from 25 states.
• First PSA “Rewind” was produced.
• Website ParentHeartWatch.org was launched.

• PHW and co-founder, Rachel Moyer featured on NBC’s Brian Williams Nightly News – Everyday Heroes
• PHW Medical Advisory Board develops review process for research proposals, surveys and other information using the PHW database of cases of death and survival.

• Collaborated for the first time with the University of Washington for CME on the
• Prevention of Sudden Cardiac Death in Young Athletes.
• PHW members participate in study by Dr. Jonathan Drezner on “Warning Symptom and Family History in Children and Young Adults with SCA”.

• Second PSA “A Heartbeat Away” is produced.
• Launched “YOU Make the Difference” poster campaign to increase awareness and educate those who live and work with youth on: Warning Signs & Symptoms of a Heart Condition and the Cardiac Chain of Survival.
• Exhibited at the American Academy of Pediatrics; met and spoke with Teri Covington, Director, National Center for Child Death Review, about the need for a national registry of SCA/SCD in youth.
   

• PHW Board Member, Diane Claerbout, speaks at National Athletic Trainers’ Association Summit on Youth Sports Safety Crisis in America – Sacramento, CA.
• Joined social media--Facebook.
• Launched “Early Detection Can Save Young Hearts” a postcard campaign that emphasizes the importance of electrocardiogram (ECG) screening in youth.
• “Making Our Kids Count” an educational campaign was developed to better educate Child Death Review Teams across the US on sudden cardiac death and its prevention.  
   

• Today Show featured PHW Executive Director, Michele Snyder, in segment Today’s Healthy Heart: Can EKGs Save Lives of Student Athletes?
• ABC World News Tonight Weekend Edition segment: Teen Athletes Sudden Deaths highlights PHW.
• Sent mailer on appropriate collection and storage of viables samples for genetic testing to 1,300 medical examiners and coroners.
• Featured in Good Morning America segment: Preventing High School Athletes Deaths.
• Live and lengthy interview of PHW Board Chair, Martha Lopez-Anderson by CNN HLN—Young Athletes Deaths: Screening Needed?
• PHW early detection campaign featured in Washington Post article titled: Do Student Athletes Benefit Much from Routine Exams
• Inaugural year for Heroes for Young Hearts Awards. This award recognizes individuals who demonstrate a continuous commitment to raise awareness of SCA in youth by taking specific actions that support the PHW mission.

• PHW is signature sponsor of Summit on ECG Interpretation in Athletes.

• Collaborated with the University of Washington and the American Medical Society for Sports Medicine in hosting CME on Sudden Cardiac Death in the Young.
• PSA on SCA in youth by sports commentator, Michael Wilbon is released.
  Get Charged Up! program is launched.
• The National Institutes of Health and The Centers for Disease Control & Prevention announced the launch of Registry for Sudden in the Young---PHW served as a catalyst.
  PHW Medical Advisory Board Chair, Dr. Victoria Vetter and Board Chair, Martha Lopez-Anderson serve on National Advisory Committee for the Sudden Death in the Young Case Registry.

• 42 PHW members and counting conducting youth heart screenings in 25 states.
• Various PHW members were part of the Citizen CPR Foundation “SCA in Youth Task Force”. 
• Executive Director, Michele Snyder and Board Chair, Martha Lopez-Anderson received the William Montgomery Excellence in Education Award for presentation at the Emergency Cardiovascular Care Update.

• 49 PHW member organizations are conducting free or affordable youth heart screenings in 28 states, with ECGs as the primary screening method. An innovative partnership with Mortara Instrument delivered free ECG machines and supplies to many member screenings.
• Think Tank on Prevention of SCD in the Young: PHW members and leadership participated in the Cardiac Safety Research Consortium’s Think Tank Developing a Rational, Reliable, and Sustainable National Heart Care Resource in Washington, D.C. The focus of the presentations was ECG screening for youth.
• PHW leaders presented at the Emergency Cardiovascular Care Update Conference, as part of the Sudden Cardiac Arrest in the Young Task Force
• PHW collaborated with the American Heart Association and 8 other national organizations to develop a Cardiac Emergency Response Plan (CERP) template and implementation resources available for use by schools.

• Launched Take the Prevention Promise, 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.
• Today Show: Parents Unite To Combat Sudden Cardiac Arrest In Young Athletes 60 Minutes Sports: The Heart of An Athlete
• Parent Heart Watch launched a newly designed, updated and mobile friendly website to meet the growing demand for information on SCA in youth. The new website highlights the Prevention Promise and accompanying 5 to Stay Alive toolkit, which features five specific action steps that parents and caregivers can take to protect children from sudden cardiac death.
• Partnered with the National Association of School Nurses and the National Parent Teacher Association on October SCA Awareness Month social media campaign.
• PHW on NASN Radio Podcast on Sudden Cardiac Arrest, which trended in the top 10 in the K-12 Education Category in iTunes.
• PHW Board Chair Martha Lopez-Anderson served as the keynote speaker at the 2nd Annual Collaborative Solutions for Safety in Sports, hosted by the National Athletic Trainers’ Association and the American Medical Society for Sports Medicine.

• PHW expands video library to elevate SCA awareness, the importance of youth heart screening, myths and facts about AEDs and the Cardiac Chain of Survival.
• Get Charged Up! launches with support from Firehouse Subs Public Safety Foundation and National Association of School Nurses to equip school with an AED and mentor the implementation of a cardiac emergency response plan.
• Presentations and/or exhibitions at:
  • California School Nurses Organization
  • Florida Association of School Nurses
  • Florida School Health Conference
  • National Association of School Nurses
  • Illinois Heart Rescue—Cardiac Arrest Network of Support
  • Northeastern University School Health Academy
  • Safe Kids Worldwide PREVCON
  • American College of Cardiology
  • National Society of Genetic Counselors

• SCA Awareness Month Becomes Official - Though concurrent House and Senate resolutions were passed in 2008 designating October as SCA Awareness Month, the recognition was never documented on the National Health Observance calendar—a resource often used by education, sports and medical communities to plan their activities to raise awareness of public health concerns. Parent Heart Watch spearheaded the effort to make it official, in partnership with the Heart Rhythm Society and with support from the Sudden Arrhythmia Death Syndromes Foundation. Eleven organizations offering SCA awareness tools and information are now listed on the nationally promoted stopcardiacarrest.org.
• In recognition of the critical role health and physical educators, administrators, parent teacher associations and school nurses play in student wellness, Parent Heart Watch fostered prevention partnerships with the following organizations to to arm these champions with SCA awareness information through podcasts, twitter chats, toolkits, blogs, digital marketing, social media and Get Charged Up! collaboration.
  • SHAPE America
  • The Superintendent’s Association (AASA)
  • Washington State PTA
  • National Association of School Nurses (NASN)

• The National Sudden Cardiac Arrest Collaborative was born out of the Institute of Medicine’s recommendation that national organizations work together to improve the SCA survival rate.
• PHW is part of the inaugural cohort, as well as the Messaging Working Group that is tasked with creating a universal call to action that will be the foundation of a national outreach campaign.
• National Athletic Trainers’ Association’s Youth Sport Safety Summit’s inter-association consensus statement is in sync with PHW's Prevention Promise to arm youth sports with cardiac emergency action plans, AEDs and return-to-participation protocol for young athletes who exhibit warning signs of a potential heart condition
• The American Academy of Pediatrics has invited Parent Heart Watch to collaborate on a number of initiatives to create a more robust action plan to incorporate SCA prevention into primary care practice. Goals include developing resources and policy initiatives that support the evolution of SCA prevention.

• New videos added to video library garner a quarter million views
• Updated website again
• Get Charged Up! doubles AEDs delivered to schools in 18 states
• PHW and the SCA Foundation joined forces to initiate Call-Push-Shock, a collaborative movement that urges the public to learn CPR and how to use an AED to help increase survival rates and save lives from sudden cardiac arrest through tested unified messaging.
• Voice of SCA in Youth - Presentations, exhibits or working groups at
  • New Jersey Chapter of AAP
  • American Association of School Superintendents
  • SHAPE America
  • National Association of School Nurses
  • Emergency Cardiovascular Care Update
  • AAP Section of Cardiology and Cardiac Surgery
    • Advocacy Public Policy
    • Publications and Communications

• AAP Family Liaison Network
• National Cardiac Arrest Collaborative
• Sudden Death in the Young Registry
• EMS Agenda 2050
• National Society of Genetic Counselors

• Co-authored: 
  • Etiology of Sudden Cardiac Arrest and Death in US Competitive Athletes: A 2-Year Prospective Surveillance Study published in the Clinical Journal of Sports Medicine (April 2018)
• Survival from Exercise-Related Sudden Cardiac Arrest in Young Athletes: Can We Do Better? published in Sports Health: A Multidisciplinary Approach (September 2018)

• Equipped 27 more schools through Get Charged Up!
• Grew video library and views now topping 350,000.
• Engaged 35 co-partners for Call-Push-Shock.
• Conducted survey through Northeastern University School Health Academy with 500 school health professionals measuring their awareness of cardiac emergency response planning and how prepared their school is.
• Call-Push-Shock poster presentation and exhibit at Resuscitation Science Symposium Presentations, training, staff development, keynotes, panel participation or testimony on SCA prevention was given across the country to thousands of key stakeholders:
  • Brevard County Public Schools Board
  • Project ADAM National Meeting: National Partnership Initiatives
  • National School-Based Health Care Convention
  • “Raising an Athlete” by Vidant Medical, East Carolina Prevention Center
  • Ocoee Middle School
  • 11th Annual Go for the Greens
  • Resuscitation Science Symposium
  • Cardiac Arrest Survival Summit

• More educational short videos added to library
• Reached 11 million with social media
• Voice of SCA in Youth at the following committees/events/conferences:
  • American Academy of Pediatrics, Section on Cardiology and Cardiac Surgery

• • Publications and Communications Committee
  • Advocacy & Public Policy Committee
  • American College of Cardiology Virtual—Care of the Athletic Heart
  • American Heart Association Resuscitation Science Symposium
  • Brevard County (FL) Athletic Directors Meeting
  • Cardiac Safety Research Consortium National Cardiac Screening Warehouse Pilot Study
  • Cardiac Arrest Survival Summit
  • Centers for Disease Control and Prevention (CDC) Health Communication Marketing and Media Forum
  • EMS World Expo
  • Florida Association of School Nurses Conference
  • HeartRescue Project
  • Kingston City Schools, NY
  • National Association of County and City Health Officials (NACCHO) Preparedness Summit
  • National Association of Pediatric Nurse Practitioners (NAPNAP)
  • National Cardiac Arrest Collaborative
  • Society of Critical Care Medicine
  • Sudden Arrhythmia Death Syndromes (SADS) Conference
  • Take Heart America 3rd Annual National International State of the Future of Resuscitation Conference

• Collaborated on release of accredited, on-demand Cardiac Risk Assessment module for primary care practitioners
• Epidemiology of Sudden Death in A Population-Based Study of Infants and Children—The Journal of Pediatrics: Spring 2020
• Improving Youth Sports Safety: Implementing an Emergency Action Plan for Sudden Cardiac Arrest— Journal of Pediatric Nursing
• Pivoted during COVID to offer first virtual annual Heart to Heart

• Intro of remote skills verification in collaboration with Health & Safety Institute
• Collaborated on SCA prevention training - Keep Kids Hearts in the Game, which satisfies many state laws for youth sports communities to take mandatory training
• Get Charged Up - 53 AEDs place - biggest year yet!
• PHW members provide tens of thousands of data points from youth heart screening to CSRC’s National Cardiac Screening Warehouse Pilot Study
• Voice of SCA in youth at the following events/conferences:
  • National Association of School Nurses—Virtual
  • Safe Kids Worldwide Childhood Injury Prevention Convention—Virtual
  • National Association of Pediatric Nurse Practitioners
  • American Academy of Pediatrics National Conference & Exhibition—Virtual
  • Cardiac Arrest Survival Summit
  • Columbia University’s “Complicated Grief”

• New Policy To Heart Screen All Youth
• Parent Heart Watch is part of the ongoing dialogue to evolve recommendations from the American Academy of Pediatrics (AAP) for combating Sudden Death in the Young. Developed by the AAP Section on Cardiology and Cardiac Surgery and the Pediatric and Congenital Electrophysiology Society (PACES) Task Force on Prevention of Sudden Death in the Young, a new 2021 policy offers guidance to help primary care providers identify children with at-risk heart conditions.

• Get Charged Up! places more AEDs
• Produced Ready, Set, Rescue video
• Voice of SCA in Youth at the following conferences:
  • American Association of Nurse Practitioners
  • National Association of School Nurses 54th Annual Conference
  • Society for Physician Assistants in Pediatrics Annual CME Conference
  • American Academy of Pediatrics National Conference & Exhibition

Proud Partnership

We are so proud to partner with Parent Heart Watch and watch them grow their organization in impact. The work they are doing is helping save young lives from sudden cardiac arrest!

To learn more about Defibtech and to join us on our quest to save lives from sudden cardiac arrest, visit www.Defibtech.com.