Ollie Hinkle Heart Foundation

We recognize the complex and layered needs of the pediatric heart disease community. Through a blend of community outreach, mental healthcare access, support for technology and research, and collective community building, Ollie Hinkle Heart Foundation's mission is to address the unmet needs of heart families while transforming the future of pediatric heart care. Our vision is that every heart child and family will be wrapped in love to eliminate the traumas endured by living with a chronic illness.

OHHF's primary focus is to support children with pediatric heart disease through adulthood and their families. This is accomplished through 4 strategic programs: Community Outreach, Ollie's Branch, Technology and Research, and Take Heart. Today, OHHF has 13 hospital partners across the country and helps almost 900 families annually in 43 states and 4 countries, even as the unrelenting pandemic plodded along. COVID-19 interrupted many things, but the immense needs of the high-risk population our organization serve remained the same. In fact, families needed OHHF services more than ever before. The pandemic highlighted the mental health crisis in the U.S. and the gaps in healthcare to support those affected by this crisis.

Having always been committed to identifying gaps in the care of heart families and filling those needs, OHHF recognized that the gaps in mental health support for these families were expansive and growing. Long before the pandemic exponentially increased the need for mental health support, OHHF operated as an innovator in mental healthcare, meeting families where they were on their mental health journey. Heart families face many hardships that are out of their control, and COVID only exacerbated them. OHHF has historically eased their stress by creating programs that address their unmet needs—Community Outreach to provide individualized support to ease the hardships experienced by heart families; Technology and Research to improve outcomes in pediatric heart care by collaborating with innovators on cutting-edge advancements; and Take Heart, OHHF’s wraparound program to shift the focus from reactive problem-solving to co-creating the future of pediatric heart care, which includes public education initiatives prioritizing a suite of panels that center patient voices across the themes of technology and research, mental health, and education.

Ollie’s legacy is about being courageous and innovative enough to lead change, which takes a village—from the talented OHHF team to the Board of Directors to the donors to the heart community and the clinicians who serve them. OHHF is committed to serving the community in partnership together. And together, this collective action will transform the future of pediatric heart care.

Our goals for OHHF are to extend our reach, expand our resources, and grow our referral sources through a hub-spoke model that keeps OHHF rooted in St. Louis, its hub, and connects the heart community nationally. Meeting these goals requires strategic partnerships committed to providing equitable and barrier-free access to services and programs for children and families impacted by pediatric heart disease through adulthood.

Our financial goals for national expansion are to extend OHHF’s reach and resources by raising additional funds to reach more heart families with our free and comprehensive mental health services through Ollie’s Branch. At the same time, we are building a network of partnerships through Community Outreach to address the social determinants of health for the pediatric heart community and start a fund dedicated to supporting Technology, and Research focused on changing outcomes.

Our strategic plan includes partnering with 28 pediatric hospitals with dedicated heart centers to serve as anchor referral sources and further our ability to create new partnerships with organizations in those markets.

Ollie’s Branch Goals & Objectives (Jan - Dec 2023):
Provide 600 therapy referrals and approximately 4700 therapy sessions, a 65% increase over the number of referrals for 2022.
Add four new primary markets and two secondary markets.
Maintain current referral response times of 1-3 business days with 1st therapy session in 1-2 weeks (national average 6-8 weeks).
Increase services to Black/African Americans and Hispanic/Latino pediatric heart families by 10%.
OHHF is currently aggregating and analyzing data to understand the clinical impact of OB services and anticipates 80% of clients receiving therapy through the program will show a decrease in anxiety and depression symptoms by the endpoint of care. This number mirrors the current national average.

Community Outreach Goals & Objectives (Jan - Dec 2023):
Provide 50 more heart families in St. Louis with financial aid, a 70% increase over the number of referrals for 2020-22.
Add five new community partners in St. Louis that provide local and regional resources for housing and food security.
Maintain current referral response times of 1.5 business days from the date of inquiry to request completion.
Aggregate and analyze data to understand better the degree of economic insecurity in this population of children and their families to inform future planning, resource need, and barriers to access.
Analysis of the data by race and socioeconomic status to identify trends

Technology and Research Goals & Objectives (Jan - Dec 2023):
Establish a dedicated committee tasked with advising and bringing partners together for awareness, partnership, funding, participation, and sharing of knowledge to expand OHHF’s footprint.

Our partnership approach is to establish anchor organizations in specific regions of the U.S., allowing OHHF to reach the broader heart community and more heart families by market. Our practice focuses on healthcare organizations that invest in pediatric heart care, leverage innovation in technology and research to improve care, have specialized cardiac services, and can refer to the most heart families in their region.

OHHF has 13 established hospital partnerships, 11 in progress, and 4 future partnerships. Our St. Louis hub serves as our base with established partnerships with St. Louis Children’s Hospital, Mercy Kids Children’s Hospital, and SSM Health Cardinal Glennon Children’s Hospital. Our hospital partnerships serve as an access network to refer heart families in our community to OHHF’s programs and services. These partners provide essential medical and expanded healthcare services to this population of chronically ill children. Through these partners, heart families connect to additional services that complement and fill in any gaps in services provided by the hospital partner.

OHHF’s strategy also focuses on a network of partnerships with local, regional, and national community outreach organizations centered on addressing social determinants of health, with our priorities focused on housing and food security. Creating a safety net for the heart families allows equitable access to resources and builds a pathway to mental health care. A newly established partnership with Home Sweet Home provides home furnishings to heart families when they secure housing. OHHF is in the early stages of more formal co-marketing associations with Conquering CHD, Mended Hearts, HeartWorks, and Sisters By Heart to bring more awareness and increase OHHF’s reach to the national heart community. These are vital partnerships. These partnerships in each market, including our hub in St. Louis, have reach, resources, and ability to refer, allowing equitable distribution to fill the unmet needs, eliminate duplication of services or competition for the same funding, and create access without barriers. We have a more significant impact when we collaborate and partner.

Hospital partners:
St. Louis Children’s Hospital
SSM Health Cardinal Glennon Children's Hospital
Mercy Kids Children’s Hospital St. Louis
Ranken Jordan Pediatric Bridge Hospital
Children’s Mercy Hospital Kansas City
Ann & Robert H. Lurie Children’s Hospital of Chicago
Lucile Packard Children’s Hospital Stanford
UH Rainbow Babies & Children’s Hospital
Boston Children’s Hospital
Rady Children’s Hospital-San Diego
Seattle Children’s Hospital
Children’s Hospital of Colorado (coming January 2023)
Children’s Hospital of Philadelphia (coming May 2023)
Draft MOUs include Children’s Healthcare of Atlanta, Texas Children’s Hospital, and Dell Children’s Medical Center, with anticipated launches in 2023.

In our 10 years of service, we have reached and served 5,300+ families in 41 states.

We have had an over 80% increase in donations in the last 5 years, representing more than 1,100 new donors—averaging over 230 new donors each year. In the same 5 year period, over 3,000 individuals have followed us on social media and subscribed to our mailing. On average, OHHF is now helping 1,000 families a year.

Ollie’s Branch:
Since its inception in April 2020, working with 13 partner hospitals, we have had a 100% response rate to 650 referrals, resulting in 2,000+ therapy sessions from 170+ licensed therapists. Ninety-five percent (95%) of recipients report they are satisfied/very satisfied with the time from referral to the first therapy session. OHHF’s dedicated data and evaluation team also tracks the number of referrals that did not result in a successful match and evaluates the number of rematched referrals which is <1% to date.

Clinical outcome measures include anonymous data reported by the therapist at the onset and endpoint of treatment to measure improvement in patients' anxiety and depression. Early results indicate that those participating in therapy sessions report improved depression and anxiety markers. A more formal data analysis is in progress to compare self-reported data to therapist-reported data to determine the clinical impact on coping skills, anxiety management, and depression in this medically complex population of children and caregivers.

Community Outreach:
Since 2014, Community Outreach has been at the center of OHHF’s work removing barriers to addressing unmet needs due to social determinants of health. Over the last two years, OHHF made almost $115,000 in grants to 70+ families to cover food, secure housing, specialized medical equipment, and transportation. Currently, a response to a referral occurs within 1.5 business days from the day of inquiry to request completion. 95% of our clients report they are satisfied and connected to resources due to our outreach work. A more formal aggregation and data analysis are in progress to better understand the degree of economic insecurity in this population of children and their families to inform future planning, resource need, and barriers to access, including a review of the data by race and socioeconomic status to identify trends.

We continue to bring the heart community together through local events to build community. In 2022, we hosted our most significant heart family events bringing 200+ heart community members together.

Technology and Research:
Since its inception, OHHF has provided close to 1 million dollars that have helped fund cardiac research through the Children’s Heart Foundation, artificial intelligence in intensive care units, a 3D cardiac printer, infant CPR anytime kits, and using fitness trackers with AI technology to look at the combinations of interventions around physical fitness and mental health for children affected by pediatric heart disease.