After our son died while on a five-mile run with the Marines in Hawaii, we asked to see his EKG. It was a shock to learn that he had never had one when he enlisted and went through medical screening at MEPS, and so his heart condition went undetected. The Lion Heart Heroes Foundation seeks to bring better cardiac screening with EKGs to military recruits. Changing anything in the Department of Defense is impossible without facts and data, and Parent Heart Watch gave us the information we needed to have President Biden sign into the 2022 National Defense Appropriations Act funding for an EKG screening pilot for incoming military academy cadets. We have made so many great connections with other parents and foundations at the annual Heart to Heart Conference each January and it inspires us to continue push the military to evolve the standard of care for their young service men and women.

After our daughter Lexi experienced and survived sudden cardiac arrest in 2016, our family was left devastated and confused. On the day she got out of the hospital, I was put in contact with Parent Heart Watch and everything seem to fall in place. They’ve been the guiding light in everything we have done in the advocacy space. Almost every single statistic, story and supporting data that we use on a daily basis comes from this amazing organization. This is not a nonprofit – this is a family. There’s only a few of us in this world who have been down this road with our kids. It’s scary and you really don’t know where to turn. Parent Heart Watch is home for all of us. It’s a place where we all feel safe and we all just understand each other without saying a word. Together we are working throughout the United States to save our most precious possession…our kids.

Finding Parent Heart Watch after my son’s survival from SCA in 2013 was like finding an oasis of comfort and hope. Having a survivor is a blessing, but still a very emotional experience. Connecting with and learning from people who understand firsthand the psychological impact by SCA has meant the world. And by uniting our efforts, we all work together to bring best practices to our local communities to help protect youth from SCA. Whether it be through teaching CPR, providing AEDs, or doing heart screenings, PHW is the organization I turn to for mentors and guidance.

The support we have received and, the community we have found through PHW has been a gift as we now navigate life without our beloved son Michael, who like many others lost his young life to SCA at just 16. Our hearts knew that we wanted to work to keep another family from experiencing our tragedy and the Parent Heart Watch community has helped us take some of the very important steps forward to make that happen. Joining PHW has given us the inspiration, resources, education, and collaboration opportunities which have helped us forge ahead with this life-saving work and honor our son through all we do to help protect young hearts.

After losing our perfectly healthy 17-year-old son to an undetected heart condition in 2018, I was at a loss for answers. Zac passed every well check, pre-participation sports physical and in 2014 a pediatric heart exam including an ECG and full Echo, which came back normal. The autopsy provided few answers. The call I made to PHW changed our lives. Martha answered the phone and said, “honey, what did the autopsy say?” I told her and she said, “that is called sudden cardiac arrest.” In one conversation Martha explained what doctors before had not. To say PHW has changed our lives is an understatement. We founded the Zac Mago Foundation to provide heart screenings to our youth. This endeavor was made possible through the resources and support provided by PHW. Being a member of this organization brought people into our lives that understood SCA and helped us realize that SCA is not RARE. I love that PHW provides a balance between loss and life. Without the PHW family, I would most likely still be searching for answers.

Parent Heart Watch shares our drive to promote health literacy among our students. They have been an excellent resource on sudden cardiac arrest prevention in youth, and have piloted a successful partnership to engage health and physical educators in championing cardiac emergency response plans in schools. We look forward to their continued collaboration to protect young hearts.

As a member of Parent Heart Watch since its founding in 2005, I have been provided with the opportunity to meet other families who have lost a child to sudden cardiac arrest, build a support network and become a prevention advocate. Parent Heart Watch provides members like me with ongoing training, education, tools and resources, including life-saving AEDs, that I could not afford to create or obtain for my foundation.

I remember the first year I was traveling to speak about sudden cardiac arrest prevention in youth and realized we needed a coalition to make a difference. Because of Parent Heart Watch, families are inspired and motivated to do something—that the loss of their son or daughter is not in vain. To have these kinds of champions around the country has truly made sudden cardiac arrest prevention in youth a national movement.

It truly takes a miracle to rise above the loss of your child and protect other families from experiencing that unspeakable tragedy. When we lost Eric, we quickly realized we weren’t alone when we found Parent Heart Watch. As parents from around the country found the inspiration and vision to make a difference, so could we. As we share our stories, our obstacles and our triumphs, we find strength. Together, we continue to save lives through CPR training, AED placement, heart screenings, and awareness building. If not us, who will?

The Get Charged Up! Program has been a wonderful resource for our high school. Not only have we been provided a brand new AED for participating in the pilot program, we have been given so much pertinent training and educational materials on sudden cardiac arrest. We also received a helpful toolkit outlining how to set up a Cardiac Emergency Response Plan for our school and guidance in disseminating sudden cardiac awareness prevention information to our staff, school community and parent groups. Many thanks to Parent Heart Watch, Firehouse Subs Public Safety Foundation, NASN, and so many others who developed this life saving system for schools!

For those interested in combating Sudden Cardiac Arrest through advocacy, Parent Heart Watch stands ready to provide families the resources to assist in developing a program that works for them. But far more importantly Parent Heart Watch offers a haven for families to grieve, process, and develop life-long friendships with other families who’ve experienced the unique trauma of losing a child.

This is a marvelous organization because it operates on more of a grass roots level than any other I know. It’s at once the most effective in reaching out to families who have lost a child to sudden cardiac arrest, supporting them through a tragic situation, and working to prevent this happening to other families by addressing the issue in the social and political arenas.

Preventable. A word that rolls around my mind daily since the loss of our son to sudden cardiac arrest. Parent Heart Watch has given Melody and me a national platform to voice our cries to prevent other parents from knowing our loss. They unite our voices, so together we will eliminate preventable deaths and disabilities from sudden cardiac arrest in youth by 2030. Let’s Go Big or Go Home.

It has been a privilege to work with Parent Heart Watch on educating families and health care providers about better investigation of young sudden deaths including saving appropriate samples for genetic testing and collecting family history information. Through these efforts local and national projects are more informed and will enable more detailed information to be compiled to help prevent future deaths within families affected by young sudden death, better understand the causes of young sudden deaths and reduce preventable deaths in all children.

We lost our son to sudden cardiac arrest in 2013 and established the Greg Holthaus Memorial Fund but as grieving parents just didn’t have the energy to get involved. But after seeing Parent Heart Watch’s segment on the Today Show we decided to join and attend the annual conference, and —wow—it was a game changer! Besides meeting other parents who shared our story we walked away with a sense of direction and now we are on a mission to provide training, testing and equipment vital to preventing & treating SCA in youth.

As an industry leader, Cardiac Science understands the deadly toll sudden cardiac arrest (SCA) takes on our youth. We also know there is a way to stop this needless loss of life. Parent Heart Watch has taken a leadership role in advocating for critical primary and secondary prevention standards to protect young hearts. This is why Cardiac Science supports their vision to eliminate preventable death and disabilities from SCA in youth by 2030 and have proudly partnered with them for 12 years to make it a reality.

When our son, Teddy, survived Sudden Cardiac Arrest in 2009, it was emotionally tough for all of us. With no medical diagnosis and a lot of unanswered questions, it was Parent Heart Watch members who provided immediate support. At our first Heart to Heart in 2010, we met other parents who inspired us to share Ted’s story of survival as a means of educating others about how youth heart screenings and Cardiac Emergency Response Plans save lives. PHW provides resources that augment my CPR and AED training, and I am part of a national, unified voice that advocates for change.

NASN is pleased to join forces with Parent Heart Watch with their launch of Get Charged Up. Often the first indication of an abnormal heart rhythm is a sudden cardiac arrest. The Cardiac Emergency Response Plan, which includes quick access to an automatic external defibrillator will save lives. PHW helps school nurses educate students and families and in the event of an emergency, more first responders will be prepared with rapid access to the AED.

If it wasn’t for Parent Heart Watch, Deb and I would’ve foundered in our loss of Josh. They helped us set a direction, preserve his memory and create a legacy. The very first collaboration event was the genesis for our foundation – we got a baseline model for a heart screening program. They helped us build a mission, and we continue to improve and be informed by their communications.

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 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.

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 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.