Ollie Hinkle Heart Foundation

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Ollie Hinkle Heart Foundation

Addressing the unmet needs of heart families while transforming the future of pediatric heart care. I fell to the ground. Then acquaintances. Louis and beyond.

Ollie Hinkle Heart Foundation was built on the LOVE Mark and I were shown when Ollie passed away from a congenital heart defect (CHD) at age one. After coming down with the flu and following a series of unfortunate events leading to sudden cardiac arrest, Ollie was placed on life support. Over the course of five days he seemed to be progressing; however the day he was scheduled to come off life su

pport (ECMO) we learned the arrest had caused complete brain and brain stem damage. I stared at the x-ray image of Ollie’s brain as the doctor explained the diagnosis to me. I did not have the strength to stand up, and a cry came out
of me I had never heard before. My husband and my father-in-law picked me up off the floor — literally and figuratively — they held me up and surrounded me with their love. And soon family and friends came from near and far and wrapped our family in love. Then complete strangers. And the circle surrounding us grew and grew. Through all we received, we found peace, hope, and strength to keep going. And eight years later, it continues to grow as we spread love to others through the foundation we began in his name. It is thanks to all of that love and support OHHF has positioned itself as one of the leading resources for heart families in St.

06/01/2026

Alyssa was a freshman in high school when she collapsed during cross-country practice from sudden cardiac arrest caused by a rare congenital heart defect.

What saved her life was immediate action. Coaches, trainers, and teammates started CPR, retrieved an AED, and worked together until her heart started beating again.

Today, Alyssa is back to running and continuing to pursue her goals.

As we recognize CPR and AED Awareness Month, her story is a powerful reminder that preparation saves lives. CPR training, accessible AEDs, and emergency response plans are not optional. They are critical.

Share this post to help raise awareness and encourage more schools, athletic programs, and families to prioritize cardiac emergency preparedness.

05/29/2026

We have some exciting events coming up, and we would love to see our heart community there 💙

🎬 Heart Family Movie Night - Join us for a cozy community night where heart families can relax, connect, and enjoy time together. Registration is now live.

🏃 Run for Heart Warriors 5K - Whether you join us at Queeny Park or participate virtually, this chip-timed 5K is all about raising awareness for congenital heart disease while bringing the community together through music, vendors, family-friendly activities, and fun competition.

🧠 Jovie’s Joy Trivia Night - Gather your team for a fun-filled evening of trivia, raffles, and a silent auction while supporting heart warriors and their families.

🍻 OHHFtoberfest - Join us from 12–3 PM for an afternoon of beer, bites, pretzels, sausages, and festive fun with the heart community.

These events are more than just gatherings; they help create support, connection, awareness, and joy for families impacted by childhood-onset heart conditions.

Comment below which event you are most excited for, and share this post with someone who should join you 💙

05/27/2026

There are so many ways to support heart warriors and their families, and every single one makes a difference. ❤️

Whether you attend an event, volunteer, donate, or host a fundraiser, you’re helping create a stronger support system for families navigating pediatric heart disease.

Swipe through to learn how you can get involved! 🤍

05/21/2026

What are you most proud of from a brand perspective?

What I’m most proud of is that we’re building something truly meaningful and far bigger and more impactful than we ever imagined when we started. Over the past 12 years, OHHF has grown into one of the leading national resources for the pediatric heart community. Families and clinicians not just in St. Louis, but across the country, look to us for support and rely on our programs, and that trust means everything.

I’m especially proud that we focus on the parts of this journey that are so often overlooked – the trauma, the isolation, the financial strain, the missed work, and the emotional toll that heart disease takes on the entire family. Because of OHHF, families don’t have to carry that weight alone. Children are gaining access to life-saving technology and innovative care, families are receiving critical mental health support through Ollie’s Branch, parents feel seen and supported, and we’re working alongside hospitals to help shape a more equitable, family-centered standard of care.

Most of all, I’m proud that Ollie’s story didn’t end when he died. It grew into something bigger – a movement rooted in love that has now surrounded and supported more than 16,000 families. Being part of that, and watching it continue to grow, is something I’ll always be deeply proud of.

05/18/2026

"Your baby has a heart condition.”

For some families, those words come during pregnancy with time to prepare, build a care team, and make a plan. For others, the diagnosis comes during a crisis. Minutes after birth. Days later. Sometimes, only after a baby is struggling to survive.

One Heart Mom told us, “We were getting ready to go home with our healthy baby girl when suddenly everything changed. Her arms went limp, and her breathing became labored. Within moments, she was admitted to the NICU, and we learned she had a critical congenital heart defect.”

Nearly 1 in 2 babies born with a congenital heart defect are not diagnosed before birth. In some parts of the country, even more cases are missed prenatally. The reality is that where you live, your access to specialized care, and even your insurance coverage, can impact whether a heart condition is caught early or not at all.

That gap matters because early diagnosis can change outcomes. It can mean earlier intervention, safer deliveries, faster treatment, and in some cases, lifesaving care before a baby ever leaves the hospital.

At OHHF, we believe families deserve access to awareness, education, and early screening no matter their zip code. Through the Take Heart Collective Impact, we are working to help close these gaps by expanding education, advocating for heart-safe communities, and helping families better understand the signs of undiagnosed heart disease.

Share this with an expecting parent, caregiver, or someone who may not know the signs of undiagnosed heart disease. Awareness and early detection can change outcomes. 💙

05/15/2026

What started 3 years ago as a fun afternoon around the biggest race of the year is quickly becoming one of our favorite annual traditions. 🏇

Our 3rd annual Derby Day Party was filled with excitement, connection, and a community that showed up ready to celebrate for a cause that matters. Between the race day style, bourbon tastings, the energy in the room, and the collective support for heart families, the entire afternoon carried a feeling that was hard to put into words ❤️

We had 168 attendees (54% increase from last year), and by the end of the event, we raised over $46,000. What continues to make this event so special is not just the Derby theme or the race itself, but the people who fill the room each year and the energy they bring. We are incredibly grateful to everyone who made this year’s event such a success.

Go ahead and mark your calendars now for next year’s big race event on Saturday, May 1. We already cannot wait to celebrate with you again! If you were there share this post 💙

05/14/2026

“How do I help my child live a full life?” 💙

It’s a question many heart parents quietly carry. Too often, children and teens with heart conditions grow up hearing more about what they cannot do than what may still be possible for them.

But what if we changed that conversation?

Instead of:
❌ “You can’t do that.”

What if we said:
✅ “Let’s figure out how to help you do it safely.”

During Mental Health Awareness Month, we are reminded that the words children hear matter. They shape confidence, independence, and how heart warriors see their future.

That means helping families ask better questions, advocate for themselves, and find trusted resources. It means talking openly about mental health, physical activity, independence, future careers, and quality of life.

Because living with a heart condition should not mean living without possibility. 💙

What is something you wish someone had told you or your child earlier in the heart journey? Share below so other families know they are not alone.

05/13/2026

Eat Drink Love was never just about the food or the wine. It was about a room full of people choosing to show up for something bigger than themselves.

Families who have lived this journey, supporters who believe in it, and a community that understands what it means to stand beside heart warriors. By the end of the night, that shared purpose turned into $457,083 raised to support heart families.

While that number is incredible, what made the night truly meaningful was the people behind it. The connections made, the conversations shared, and the community that continues to show up.

We’re grateful to everyone who showed up and made it what it was. Because it was never just about the food and wine. If you were there, you know it was more than a night out. 💙 Tag someone you shared it with or pass this along to someone who should be in the room next year. You can also visit the link to view the full event photo gallery. 📸 https://ovrdu.pixieset.com/eatdrinklove2026/

05/10/2026

Today we honor every heart mom. 💙
The strength, the love, and everything that often goes unseen.

Share this with a mom who deserves to feel seen today. 💙

05/08/2026

Healing does not always look like a follow-up appointment or a successful procedure. Sometimes, it looks like having space to process everything that comes with a heart journey.

May is Mental Health Awareness Month, and at OHHF, we believe emotional support is just as important as physical care. Ollie’s Branch was created to support heart warriors and the families who walk alongside them. This program connects families with licensed therapists who understand the emotional realities of living with a heart condition, including stress, trauma, anxiety, and caregiver burnout. Because heart disease impacts more than the patient. It affects the entire family.

Ollie’s Branch helps create space for healing, connection, and support so families do not have to carry this alone. If you or someone you love could benefit from this kind of support, please know you are not alone. 💙

Chances are, someone in your life may need this too. Consider sharing this with them.

You can also visit the link to explore available resources and learn more.💙 https://theohhf.org/ollies-branch/

Address

144 W Lockwood Avenue Suite 201
Webster Groves, MO
63119

Website

https://www.theohhf.org/donate, https://linktr.ee/theohhf, https://www.youtube.com/@theohhf

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