OUR STORY

10 years ago I would have told you that my fundraising goal was to end the disease that took my son. Today, we know that isn’t going to happen and we have a better understanding of where to focus our attention and efforts.

As I have leaned into the heartbreak of losing Ollie and come to terms with the disease that took him from us, I’ve seen the reactive, not proactive, nature of cardiac care that leaves heart families to endure and navigate their mounting unmet needs alone. It’s time we shift away from how we’ve always done things. We are moving into a landscape that will transform the future of pediatric heart care. Every heart child and family will be wrapped in love to eliminate the traumas endured by living with a chronic illness. We will do so by uniting heart families and clinicians through community; providing access without barriers; extending lifelong support to heart families; connecting the technical and human side of care; and through education, empowerment and advocacy.

We loved Ollie as hard as we could for 13 months and while he may be gone, that immense love is not. Ollie’s legacy is about being courageous and innovative to lead change, which takes a village—from our talented OHHF team, to our passionate Board of Directors, to our generous donors, to the courageous heart community, and to the dedicated clinicians who serve this community. Our love for one little boy and all of your love for us has created a community that has changed the lives of tens of thousands of individuals. All that we’ve accomplished, we accomplished together! And together we are going to transform the future of pediatric heart care.

The Hinkle Family - About Ollie Hinkle Heart Foundation

10 years ago I would have told you that my fundraising goal was to end the disease that took my son. Today, we know that isn’t going to happen and we have a better understanding of where to focus our attention and efforts.

As I have leaned into the heartbreak of losing Ollie and come to terms with the disease that took him from us, I’ve seen the reactive, not proactive, nature of cardiac care that leaves heart families to endure and navigate their mounting unmet needs alone. It’s time we shift away from how we’ve always done things. We are moving into a landscape that will transform the future of pediatric heart care. Every heart child and family will be wrapped in love to eliminate the traumas endured by living with a chronic illness. We will do so by uniting heart families and clinicians through community; providing access without barriers; extending lifelong support to heart families; connecting the technical and human side of care; and through education, empowerment and advocacy.

We loved Ollie as hard as we could for 13 months and while he may be gone, that immense love is not. Ollie’s legacy is about being courageous and innovative to lead change, which takes a village—from our talented OHHF team, to our passionate Board of Directors, to our generous donors, to the courageous heart community, and to the dedicated clinicians who serve this community. Our love for one little boy and all of your love for us has created a community that has changed the lives of tens of thousands of individuals. All that we’ve accomplished, we accomplished together! And together we are going to transform the future of pediatric heart care.

OUR MISSION

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.

OUR PILLARS

Uniting heart families & clinicians through community

Providing access without barriers

Extending lifelong support

Connecting the technical & human-side of care

Promoting education, empowerment, & advocacy

OUR VISION

Every heart child and family will be wrapped in love to eliminate the traumas endured by living with a chronic illness.

THE WHAT

The needs of the heart community are layered and complex. OHHF identifies and meets a family’s basic needs before we can address their psychological and social needs or focus on outcomes.

Inspired by Maslow’s Hierarchy of Needs (Maslow AH. Psychological Review. Vol. 50. 1943. A theory of human motivation)

Inspired by Maslow’s Hierarchy of Needs (Maslow AH. Psychological Review. Vol. 50. 1943. A theory of human motivation)

THE HOW

Caring for a child with heart disease is a lifelong journey as pediatric heart disease is a chronic, unrelenting illness. OHHF provides a spectrum of support throughout a child’s lifetime, even in the unfortunate circumstance that they pass away, allowing families constant access to loving, reputable services without barriers.

Ollie’s Branch

  • Providing free and trustworthy mental health support that represents every heart family
  • Removing barriers that keep heart families from receiving the mental health support they need

Community Outreach

  • Creating a network of love through partnerships
  • Building bonds for lifelong support
  • Connecting heart families through events
  • Loving support through financial grants and care packages

Technology and Research

  • Protecting quality of life through prevention
  • Using precision for personalized care
  • Leveraging prediction for early recognition
OUR TEAM
JENN HINKLE

Executive Director & Co-founder

BETH RUMACK, RN, MSN, MBA, NNP-BC

Director of Strategic Partnerships

SYDNEY PHILPOTT-STREIFF, MPH

Director of Programs

KATE STACY

Outreach & Community Partnership
Manager & Heart Mom

SARAH SCHOTT

Marketing & Communications Manager

AMY HOGAN, CPA

Finance & Compliance Manager

LAURA ULRICH, MPH

Programs Manager

ELLEN COTTON

Office Administrator

OUR IMPACT
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RAISED SINCE INCEPTION

0

FAMILIES HELPED

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STATES REACHED

CONTACT US

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CONTACT US
144 W. Lockwood Ave, Suite201 Webster Groves, MO 63119

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Riley’s Story

Riley was born with tetralogy of Fallot with pulmonary stenosis and complete heart block. He underwent his first open heart surgery at just two months old to repair his heart and a few weeks later had a cardiac pacemaker placed. Since then he has had his pacemaker replaced twice, once after coding in the hospital, and will need additional replacements as he grows.

Riley is happy and healthy living at home with his amazing grandmother, Tracy, and enjoys playing catch, singing and working on PT and OT with Missouri First Steps.

Stella’s Story

Stella was born with hypoplastic left heart syndrome (HLHS) in December 2015 – a CHD that meant she would only have half a working heart and need a series of three surgeries to reconstruct her heart’s anatomy. She underwent her first open heart surgery when she was only two days old, and then additional surgeries at four months old and three years old. Thankfully her gifted surgeons were able to create a stable heart for Stella and she has been the light of her family’s life ever since!

Today Stella is a spunky and smiley five year old that brightens the day of everyone she meets.

Evie’s Story

Evie was born at twenty weeks with hypoplastic right heart syndrome. Her surgeons had planned a series of three surgeries to repair her heart, but unfortunately at birth they discovered her coronaries were missing or abnormal. At one week old, Evie was listed for a heart transplant. While waiting for her hero heart, she was placed on ECMO. At eight weeks old she was blessed with a second chance at life and received a heart transplant!

After eighty-two days inpatient, Evie went home for the first time where her parents are able to enjoy their happy and healthy baby girl.

Emmalyn’s Story

Emmalyn is a year and a half old and was born with Transposition of the Great Arteries (TGA). She had her first surgery at four days old and then again at nine days old. She has since had two angioplasties.

Emmalyn is healthy and thriving. She loves to eat fruit of all kinds, play with all of her animals, play in water, and be outside!

Heart Warrior - financial request

Calvin’s Story

Calvin was diagnosed with a congenital heart defect at fifteen months after the pediatrician noticed a heart murmur, along with other chronic respiratory issues. Calvin has undergone two open heart surgeies in order to re-establish correct blood flow and repair his CHD.

Although Calvin’s CHD will always require specialized care, he is now a happy and thriving four and a half year old. He loves to play golf, play outside, drive his gator and anything to do with trucks, tractors, trains or airplanes.

Allyson’s Story

Allyson is a five year old Heart Warrior. She was diagnosed with a single ventricle heart, heterotaxy syndrome, Noonan’s Syndrome and has survived multiple heart surgeries and a long list of complications over her little life.

Allyson is a preschooler and is so excited to go to kindergarten next year! She has three older siblings who mean the world to her. Allyson is extremely adventurous and her favorite thing to do is go to Target.

This girl is so full of spunk and fight and she is changing the world around her with her story.

KATY LINNENBRINGER
President

Criminal Defense Attorney, Pelikan & Orris LLC

AMANDA SCHMITT
Vice President

SVP, Commercial Banking Relationship Manager, U.S. Bank

PAPPIM STEVENSON
Secretary

Supply Chain Sourcing Coordinator, BJC

LINDA HUNTER
Expansion Chair

Philanthropist

TIM WALKENHORST, CFP
Financial Chair

Financial Advisor, Renaissance Financial

LAURA BOHON
Senior Executive Search Consultant, Benskin and Hott Talent Partners and Heart Parent

NYTASHA TAYLOR
Express Scripts, VP Drug Sourcing

MAGGIE STIEVEN JEWELL
Owner, MKS Designs

MATT SCHMITT
Director, Business Development, Centene Corporation

TEMEKA GAUSS
BJC Healthcare, Advise and Counsel Lead

ANNE PENNICK
Susan G Komen, Product Owner

Ari’s Story

Meet Ari, our spunky vivacious 5-year-old heart warrior, Miss America contestant, and Latoya heart mom extraordinaire. Miss Bey was diagnosed with complex single ventricle heart disease early in her mom’s pregnancy.

Their story has also been complicated by congenital heart disease and cancer. Latoya was diagnosed with breast cancer and underwent treatment before Ari’s birth.

Ari had her first open heart surgery at one week of age and her second at 6 months old. This dynamic mother-daughter duo are the real heroes.

Diego’s Story

Meet Diego, a 14-year-old heart warrior with Hypoplastic Left Heart Syndrome. He has endured multiple surgeries that rerouted his blood flow to maximize his heart’s function. These procedures have been so effective that he has been cleared to play sports and leads a life without constraints.

Diego is an active teen who loves flag football, video games, dad jokes, and walking his dog. His laugh is infectious and always brings an energy and joy that lights up any room. He is the oldest of two brothers, and despite the typical sibling rivalry, he enjoys hanging out with his younger brother and playing video games.

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