Fall was such a busy time. We attended a 2-day conference on Prevention of Sudden Cardiac Death in Athletes, sponsored by the University of Washington School of Medicine. We hosted an information table at a Veterans' Day ceremony at the University of Washington Bothell, which resulted in all kinds of growth and publicity, as detailed in their blog post on UWBNews.
The Same Decade Birthday Party John and Laurie are ten years apart in age--so every ten years they celebrate being in the same decade agewise. This year, the party had a Lion Heart Heroes theme. Friends donated $1400 so we can donate another AED to a military base. Everyone who came to the party was offered a lesson from Chad Russell of Cardiac Science on hands-only CPR and how to use an AED. It made the party so meaningful!
I changed jobs so that I am now working part-time instead of full-time. This will allow me more time to focus on Lion Heart Heroes.
First order of business: a new look and new tag line:
Lion Heart Heroes Foundation Keep military hearts beating! Stand up to Sudden Cardiac Arrest through * Awareness * Prevention * Survival
Lion Heart Heroes donated an AED to the JROTC unit at Kentwood High School.
March 2017 We partnered with Nick of Time Foundation to hold a screening at Kentwood High School on March 8th. This is where David went to JROTC, so it was perfect for our inaugural screening event. We screened 293 young people and found three with heart problems that needed follow-up.
February 2017 Sometimes it feels like things are moving so slowly, but then suddenly, something breaks loose and events start happening at a rapid pace. That's the way it's been this winter. It took months to get approval to donate an AED to Naval Station Everett--we had to get permission from the Rear Admiral! Then, the approval letter arrived, we bought the AED and we held the donation ceremony on February 24th at 11:00am.
AED Dedication Ceremony at Naval Station Everett
The ceremony at Naval Station Everett was written up in an article by Petty Officer 3rd Class Joseph E. Montemarano for DVIDS, which can be found here. More pictures and a Facebook Live video are on our Facebook page.
We bought our first AED!
Fall 2016 We attended the SADS (Sudden Arrhythmia Death Syndromes) Conference in San Diego in early October. There we bought our first AED for the foundation! The importance of being heart aware was driven home to us on our return flight when a young woman passed out and had no pulse. Doctors on board revived her as we began our descent into Seattle, and it looked like she would recover. It turns out she had taken cold medicines--which may have aggravated an underlying heart condition such as Long QT Syndrome. We had just learned about that at the conference!
In other news, the Marine Sudden Death Study did not get IRB (Institutional Review Board) approval because of issues related to consent, so the Navy is scaling it down to a smaller 'pilot' project. We are working some other angles too and appreciate your support.
John and Laurie meet Cheryl Zabell for the first time.
Summer 2016 We are learning about another aspect of cardiac health, and that is the role genetics plays in sudden cardiac arrest. John and Laurie met with Dr. Peter Byers, director of the Center for Precision Diagnostics lab at the University of Washington, where we learned about genetic testing. They can test a person's DNA for cardiomyopathies and rhythm disturbances and use that information to find other family members who might be at risk.
Lion Heart Heroes Foundation is now registered with AmazonSmile! We invite you to support us by shopping at AmazonSmile. Go to smile.amazon.com/ch/47-2109345, to link directly to smile.amazon.com in support of Lion Heart Heroes so that you can support the foundation when you shop. For eligible purchases at AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price to your selected charitable organization, and we hope you pick Lion Heart Heroes Foundation!
May 2016 Board member John spent some time in the Washington DC area and met with the national director of the Marine JROTC in Quantico, VA. He agreed that coordinating with Parent Heart Watch screenings in high schools with JROTC units is a significant opportunity. John also met with the regional head of the Navy JROTC units who will be introducing him to the national head of Navy JROTC. One of our goals is to present information on cardiac screening at the next Tri-Service ROTC/JROTC conference early next year. We figure that screening JROTC students in high school is a step toward preventing cardiac issues once they join the military. Current military medical tests at MEPS do not include an ECG for enlisted men and women.
March/April 2016 In the meantime, we are working on a more local level to bring cardiac screening to military sites in our area. Board member Myra has met with leaders at the Everett Naval Base to discuss donating AEDs and having a screening there, and we have been working with Nick of Time Foundation to set up a screening at Kentwood High School where David went through JROTC. This is scheduled for March 8, 2017. Raising awareness one person at a time! February 2016 The Navy Bureau of Medicine and Surgery (BUMED) is working together with researchers at Uniformed Services University to conduct a research study of 35,000 Marine recruits at MCRD San Diego over a two-year period. You can help move things forward by contacting your congressional representatives and asking them to support the "Marine Sudden Death Study" that the Navy is working on. Congressional support might help to move things along more quickly. Parent Heart Watch Conference 2016
John and Laurie headed to Orlando, Florida in mid-January for their first Parent Heart Watch conference. (See www.parentheartwatch.org) Many of the families there have lost children, ranging in age from 16 months to 35 years, to Sudden Cardiac Arrest. Some have started foundations to raise awareness of SCA, promote CPR training and access to AEDs, and bring screenings to students. The conference brings them together to share best practices, learn from experts, and network. Even among this very knowledgeable group, they were shocked to learn that the military does not currently use ECGs to screen young people who enlist to serve our country.
They shared our excitement at the research project that the Navy has approved and are eager to learn of the results at next year’s conference.
We were able to suggest several times that the school screenings should include JROTC and students interested in the military as well as athletes. Our contacts at Nick of Time volunteered the idea of a JROTC screening at the unit where David started his military journey.
Additionally, we learned a ton about SCA, what causes it, treatments and new protocols for saving those who are reached in time.
January 2016 We are delighted to welcome Cheryl Zabell to the Lion Heart Heroes Board. See Cheryl’s Story below. Cheryl comes to us from Michigan where she found us when she contacted her state senator’s office. We were able to meet with her in person in Seattle in December, and the Board voted her in on January 3rd. December 2015 Cheryl’s Story Last month we were contacted out of the blue by Cheryl Zabell, whose son Gregory died in 2014. PFC Gregory Adkins joined the Army in January 2013, something he had wanted to do since he was four years old. He loved the Army and all of the guys he was serving with and felt like he was where he was supposed to be. He was stationed at Fort Hood, Texas.
While preparing to go to Afghanistan, Gregory developed a blood clot from the extreme exercise. The clot went through a hole in his heart that had never been diagnosed and caused a stroke. Gregory passed away in May, 2014.
Cheryl writes, “If he had known about the hole in his heart, Gregory would not have gone into the Army in 2013. The hole would likely have been treated and he could have gone into the Army later. If Gregory would have had an EKG screening as part of the process of joining the Army he would likely still be with us today.
"I can't change my son's tragic story, but I want to try and make a difference for other young people who are willing to sacrifice their lives for our freedom. Many heart issues can be identified and treated before they become a fatal problem. I have offered my help to the Lion Heart Heroes Foundation to petition the US Military to add EKG screenings to the MEPS process across the country.”
Cheryl continues: “Please share this story to get the word out, and donate to the foundation if you see fit. Healthy young adults dying from Sudden Cardiac Arrest or from strokes due to a hole in the heart, or from any other heart related issues should never happen. If the medical screening included an EKG as part of the entrance physical, then most problems can be identified and treated."
Cardiac screening might have saved Gregory, and it can certainly save many others. [Previous entries have been moved to the end of the Timeline below.]
Laurie at the 2016 Parent Heart Watch Conference.
PFC Gregory Adkins
A Timeline for Lion Heart Heroes Foundation
Here is a timeline of how our foundation got started and how we got to where we are now:
Our son David died of Sudden Cardiac Arrest (SCA) while on a 5-mile training run with his battalion in Hawaii. The next days and weeks were a blur of family, friends, funerals and flowers.
After making it through the holidays, we started the new year wondering how to move forward through our grief toward something positive.
We first heard about the Nick of Time Foundation (NoTF) from a friend whose niece goes to Meadowdale High School. NoTF will be having a screening in February in memory of Matthew Truax, who died from SCA in September.
At a luncheon at Joint Base Lewis-McChord (JBLM) on January 26, we spoke with the commander of the Marine Logistics Battalion about partnering with NoTF to bring cardiac screening to the Marine reservists.
On March 25, the Nick of Time Foundation folks (Darla and Sue) had a conference call with the command from JBLM, along with John and Laurie of the (future) Lion Heart Heroes Foundation, to discuss a cardiac screening at JBLM in January or February 2015.
John and Laurie volunteered for a NoTF cardiac screening at Decatur High School in Federal Way, Washington. We were impressed with their organization and efficiency.
June and July 2014
We met with Nick of Time Foundation to discuss partnering with them. We also met with several state congressmen to express support for the Sudden Cardiac Arrest Awareness bill currently under consideration in Washington state.
Laurie got down to the serious business of learning how to start a non-profit corporation.
After a long struggle over what to name our corporation, we settled on the Lion Heart Heroes Foundation. We reserved the name with Washington Secretary of State and purchased a web domain name.
The initial Board of Directors was formed, with Laurie Finlayson as the Executive Director, John Finlayson as the Treasurer, and Thomas Finlayson as the Secretary.
Thomas created our fantastic logo using his lion tattoo. (See "Why the Lion?")
We wrote the Articles of Incorporation and had our first board meeting to approve them.
We sent in the paperwork and became officially incorporated on October 16, 2014.
Lion Heart Heroes Foundation (LHHF) opened a bank account and started taking contributions.
Our Facebook page launched on October 26 and gained 500 Likes by early November.
We ordered business cards and a bank deposit stamp, our first real expenses.
We launched the LionHeartHeroes.org web page.
With the date of the JBLM screening drawing closer, we created a fundraising page on YouCaring.org to collect donations to cover the cardiac screening of 250 Marine reservists at $25 each.
On November 28th, the Board of Directors approved Myra Rintamaki as a new board member. Myra brings a wealth of experience and innumerable military connections to LHHF. Additionally, she is the one who first had the vision of partnering with NoTF to bring cardiac screening to the military. Welcome aboard, Myra!
On December 5, Darla, Sue, and Steve from NoTF, and John, Laurie, and Myra from LHHF met with the new commander of the Marine Logistics Battalion, the Chief Medical Officer, the Sergeant Major and other Marines at JBLM to plan our inaugural cardiac screening on January 24th.
Application for 501(c)(3) tax exemption was filed with the IRS on December 6.
John and Laurie traveled to Hawaii to welcome David's platoon home from deployment.
On December 16, we got word from JBLM that the legal office for the Marine Corps Reserve in New Orleans would not give permission for our cardiac screening event at JBLM in January. Laurie contacted JAG counsel who began working with BUMED, the Navy Bureau of Medicine, to resolve the issues. All communication was delayed by the holidays.
The cancellation of our cardiac screening on January 24 was a setback in the short term, but we remained hopeful that this would set in motion changes that can bring cardiac screening to a much greater proportion of the military population.
US Navy Bureau of Medicine and Surgery (BUMED) is reviewing our proposal.
The Washington State Legislature is considering a "Sudden Cardiac Arrest Awareness Act" that would require coaches and parents of high school athletes to learn about SCA.
We connected with Terri Bellamy-Coleman whose son died of SCA at Fort Benning. HIs death was partly related to dietary supplements he had been taking. You can view her public service announcement about the dangers of supplements here.
We are working with the Human Performance Resource Center to advocate for a Department of Defense Instruction that would mandate having AEDs at military physical fitness tests.
On David's birthday, March 20th, we had an important phone conversation with the Chief Medical Officer of Navy Medicine (BUMED). He is supporting research efforts into cardiac screening of military recruits with 'smart' ECG tests.
At a Nick of Time screening, we met Dr. Jonathan Drezner from the University of Washington, an expert on Sudden Cardiac Arrest in young athletes. He and his team are collaborating with military researchers on best practices for screening for heart abnormalities. Better together!
We met with Dr. Kevin Dorrance, Chief Medical Officer of BUMED, in Arlington, Virginia. He is waiting on official approval, but has received a verbal commitment to fund Navy research into cardiac screening with ECGs, using the newest machines with algorithms. The research team is in place, and they are working on approvals for starting in the first quarter of 2016. Such good news!
John attended Drones Data X, a conference in Santa Cruz, and connections made there led to a meeting with Paul Morgan of Ausley & Associates while we were in Washington, DC. We discussed using drones for rapid deployment of AEDs. You heard it here first....
Businesswire publishes an article about CardeaScreen, a major breakthrough in heart screening for young athletes. CardeaScreen is a new portable, hand-held ECG device developed for screening young athletes’ hearts. Its custom algorithms can help physicians quickly and accurately identify abnormal cardiac conditions that may lead to SCA, or other quality of life limiting conditions, through high-quality ECGs and easy-to-use tools for over-reading and reporting.
We learn that CardiaScreen is the device that's going to be used by BUMED in the research study they're working on for 2016.
Approval for the Navy study has been finalized! Details will be forthcoming. Dr. Dorrance said that official approval took a lot longer than he would have liked, but the researchers continued the prep work, so there should be no significant delays.
We feel blessed that we have reached this stage barely a year into the process when we felt it would have taken years to draw attention up the chain of command from the bottom.