Ollie Hinkle Heart Foundation: Transforming the Future of Pediatric Heart Care

 

“Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit.” —Napoleon Hill

With any great challenge comes a greater call to action. Amidst the difficulties brought about by adversity, one family has proven themselves to be a shining example of resilience and innovation. I sat down with Mark and Jenn Hinkle to learn about their journey founding the Ollie Hinkle Heart Foundation and how they plan on transforming the future of pediatric cardiac care.

We met at the site of their office in Webster Groves. After a warm greeting and introduction, Mark spoke to us about his introduction to pediatric heart disease and the importance of supporting a cause you are most passionate about.

“Our son Ollie was born with a congenital heart defect, we found out when he was three days old. This was our first introduction into pediatric heart disease. Before that, we were not heavily involved in the world of philanthropy,” Mark reflected.

Jenn and Mark’s lives were completely altered by the loss of their child. Despite enduring tremendous pain and grief, the couple were determined to help children and families in the heart community, and to honor Ollie’s legacy. Through their love and commitment, the Ollie Hinkle Heart Foundation was born.

The mission of the Ollie Hinkle Heart Foundation is to address the unmet needs of heart families while transforming the future of pediatric heart care.

“We’re building what we wish we had. We think back on what we went through when we lost Ollie. We felt alone. We were buried in medical bills. We attempted therapy after losing Ollie and it felt uninspiring. Our goal was to remove the barriers that prevented heart families from getting what they need,” Jenn said.

The Ollie Hinkle Heart Foundation is one great example of the growth an organization can go through while partnering with the St. Louis Community Foundation.

“We’ve seen the growth of being a field of interest fund through the partnership with the Community Foundation. Our programming is the root of everything we do. We are always finding ways of identifying what heart families require and meeting those needs,” Jenn said.

I asked Jenn about some of OHHF’s programs—Community Outreach, Ollie’s Branch, and Technology and Research—and to share what those categories represent.

“Our Community Outreach is designed to wrap families in love. Through this initiative, we offer financial support, care packages, and peer to peer support. This kind of support system helps heart families connect to other families with similar diagnoses,” Jenn said.

Ollie’s Branch is the Foundation’s flagship program and addresses the need for mental health support, serving as an access point for heart families to receive free mental health services. “Ollie’s Branch launched as a virtual platform in St. Louis during the pandemic and word of the program quickly got out. Now we are nationwide with more than 230 therapists, and we can reach even more families than we would have expected,” Jenn said. In addition, the services provided by Ollie’s Branch afford the opportunity to collect data and learn more about the mental health of chronically ill and medically complex families.

In Technology and Research, the Foundation works to turn reactive care into proactive care by funding medical research and hosting conferences. These virtual conferences bring attendees from across the country.

“The purpose of these conferences is to bring families and clinicians to the same table so they can discuss what’s going on. The topics that are discussed at these conferences range from technology to healthcare or what families see as their kids grow up to play sports,” Mark explained.

I spoke with Mark and Jenn about the beginnings of the Foundation, which started as a field of interest fund at the St. Louis Community Foundation.

“We wanted to do something that was based on human and family values, we weren’t just interested in writing checks to researchers. We were introduced to the Community Foundation because at the time we were running funds through Children’s Heart Foundation, and we wanted to do more to help families, so we started looking at becoming a 501c(3).”

In the early years of their partnership with the Community Foundation, Mark and Jenn received guidance from staff members including Wendy Witte, Donor Relations Manager and SOS Officer.

“We worked with Wendy from the very beginning. The entire process was seamless and gave us insight into how we wanted to move forward and do impactful work with the money,” Jenn said. Wendy still works at the Community Foundation today and finds great joy in watching the Ollie Hinkle Heart Foundation grow.

When it came time for the fund to become a 501c(3) nonprofit, the Community Foundation provided guidance on the process.

“We were getting larger and wanted to be more involved with the families and do things like pay their utility bills for them,” said Jenn. “Families were relying on the programs we had, and we were growing—we knew we needed to get an office and hire staff, but we didn’t want to slow our growth as we figured things out along the way. That’s why the staff at the Community Foundation were so helpful to us.”

I asked Jenn for advice that she would give to another person who might want to create a fund at the Community Foundation that would eventually become its own nonprofit.

“Going through the Community Foundation, even though you aren’t responsible for all the ins and outs, you still get a good grasp of everything and what it takes to have a nonprofit,” Jenn said.

“But for anyone with a fund who is considering going out on their own, consider if you’re going to start something that isn’t being done. If you are drawn to needs that aren’t being met, meet them. Go for it! Otherwise, if the work is being done, go partner with that organization. You can serve the community better by working together.”

Jenn added, “There are other organizations around the country that help heart families, but we don’t do exactly what they do. For example, they may have access to people in their community we wouldn’t otherwise be able to reach. It’s not uncommon for us to refer people to the services of our partner organizations.” The Foundation partners with local organizations such as Home Sweet Home.

For Mark and Jenn, the bigger picture of their organization is to continue to build partnerships with hospitals, family foundations, and like-minded organizations in St. Louis and across the country.

“We set out to change what the experience looks like for people like us. We seek expansion through a nationwide collaboration between technology, clinical, family, and mental health professionals. Our aim is supporting anything that can touch these families in a positive way as the landscape of pediatric care continues to evolve.” Mark said.

Ollie Hinkle Heart Foundation has raised more than $6.2 million since its inception in 2013. They’ve helped more than 6,300 heart families in 45 states, provided more than 3,100 therapy sessions, and funded more than $1 million in technology and research grants.

“We don’t just talk about needs, we meet them. We identify the problem and find a solution,” said Jenn. “We want to pull everyone and all families together under one roof to make sure that together we are meeting all unmet needs of heart families—and wrap them in love while we do it.”