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Global ARCH / Member Spotlight  / Ollie Hinkle Heart Foundation – Coming Together to Transform Lives

Ollie Hinkle Heart Foundation – Coming Together to Transform Lives

What is the main goal of the Ollie Hinkle Heart Foundation?

OHHF’s central goal focuses on the Take Heart Initiative to cultivate an equitable standard of care that centers the voices of every person and family affected by childhood onset heart disease in collaboration with clinicians and health systems by empowering and educating caregivers, building confidence and courage, advocating for change, and driving results. 

How and why did OHHF get founded?

Ollie Hinkle died due to congenital heart disease (CHD) at 13 months old. Mark and Jenn Hinkle channeled their grief into the Ollie Hinkle Heart Foundation (OHHF) by taking their love for Ollie and the love given to them by family and friends to pay it on to heart families whose struggles they knew firsthand. During Ollie’s life, the Hinkles observed the often reactive nature of cardiac care, which leaves families to endure and navigate mounting unmet needs alone. This experience led to a mission to transform the future of pediatric heart care by uniting families and clinicians to address basic social needs through Community Outreach, mental healthcare access through Ollie’s Branch, support for Technology and Research to improve outcomes, and collective community building through Take Heart.

What are some of your biggest/proudest achievements?

Almost eleven years since its inception, OHHF has raised over $7 million, contributing about $4.4 million towards mental health support, $1.6 million towards community outreach, and $1 million towards technology and research innovations. We are most proud of Ollie’s Branch, our flagship program that began in 2020, which provides access to reputable, compassionate mental health services tailored to the needs of those suffering from trauma that occurs with surviving and living with a severe heart condition. Through Ollie’s Branch, OHHF connects individuals and families through our advanced matching algorithm to a community of 250+ licensed therapists at minimal or no cost for services that provide exposure and response therapy, trauma-informed care, psychotherapy, relationship-based therapy, cognitive therapy, LGBTQ+ informed therapy, play/music/art, family/group therapy, behavioral and addiction-related therapies, and more. Language accessibility includes English/Spanish-speaking therapists and translator services for all other language needs. Ollie’s Branch has served 1600+ clients and funded over 5,400 therapy sessions with less than a 1% rematching rate since the beginning.

An OHHF heart family

Talk about some of the challenges you face and how you deal with them.

Providing for the mental health of the heart community will take systemic change, starting with centering the voices of individuals and families with clinicians and healthcare systems, providing equitable access without barriers, extending lifelong support, connecting the technical and human side of care, and through education, empowerment, and advocacy. As a US-based organization, OHHF recognizes a need for mental health support as a standard of care and the challenge of providing equitable counseling services and delivering sustainable services.

What do you hope to achieve in the future?

OHHF hopes to publish our mental health data over the next few years to show how Ollie’s Branch is increasing access to services, maintaining timely referrals and wait times, improving treatment outcomes, and addressing health disparities in marginalized heart individuals and their families. Currently, OHHF is partnering with other organizations interested in co-publishing to evaluate different data points that can be analyzed retrospectively.

Global ARCH

Nahimeh Jaffar 

Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).

 

Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.

Amy Verstappen, President

Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world.  Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.