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How Harboring Hearts is Supporting Transplant Patients

Written by Zoe Engels, Contributing Writer and Editor

We’re so excited to introduce you to Harboring Hearts, an organization doing urgent work to support cardiac surgery and transplant patients. Established in 2009, this NYC-based 501(c)(3) organization provides pediatric and adult patients with emergency housing, transportation, and food alongside emotional support programming, including support groups, virtual cooking classes, and art therapy. They have nine partner hospitals and provided 414 patients with emergency housing, food, and transportation last year alone! Keep reading to learn more about Harboring Hearts and their impact.

How Did It All Begin?

After Michelle Javian’s father suddenly had a massive heart attack, everything changed for her family. They spent two years in and out of NewYork-Presbyterian Hospital treating his heart disease. At the hospital, Javian saw firsthand that many heart patients and their families lacked community support and assistance.

In 2015, she recalled to CNN, “[The families] were living in the waiting rooms day in and day out, taking showers wherever and whenever they could, eating really unhealthy. They were emotionally drained.”

After Javian lost her father to heart disease in 2008, she teamed up with Yuki Kotani to create a nonprofit that would help families like the ones Javian had encountered in the hospital. Around the same time, Kotani’s father was also at NewYork-Presbyterian, waiting for a heart transplant, so she was eager to co-found a nonprofit with that mission.

Harboring Hearts was born, officially receiving its 501(c)(3) status on the one year anniversary of the death of Javian’s father.

Financial Support for Patients

Harboring Hearts’ emergency fund is designed to offer a financial safety net for cardiac surgery and transplant patients by providing them with grants for food, housing, and transportation.

Nikkya Hargrove, the Vice President of Operations and Programs at Harboring Hearts, told SODA that the organization has seen an increase in food and transportation requests over the past year in a half or so due to inflation. Additionally, they have seen an increase in rent requests due to changing COVID-19 rental policies.

Hearts for Russ, an organization working to increase organ donation advocacy and registration rates, is a mutual funder for SODA and Harboring Hearts. In the past few years, Nikkya said Hearts for Russ’s increased support has gone a long way within the emergency fund, allowing Harboring Hearts to help patients stay afloat by assisting with medication copays, utility bills, any funeral costs, meals, and rent and mortgage payments.

Hearts for Russ is a long-time supporter of SODA, too! Most recently, they’re one of our sponsors for the inaugural SODA Campus Challenge.

Emotional Support Programs

Heart Parties - Prior to COVID-19, Harboring Hearts held Heart Parties at their partner hospital. These two-hour experiences, hosted in-hospital, were designed to provide patients with a fun, uplifting distraction. Harboring Hearts would bring in a character, volunteers, and even a DJ. The volunteers would lead activities such as arts and crafts, and goodie bags would be handed out at the end. Due to the COVID-19 policy changes and procedures, volunteers can no longer go into hospitals, so the Heart Parties have transformed into virtual cooking classes.

Virtual Cooking Classes - When these cooking classes began, Harboring Hearts staff would lead them, send a gift card to participants who would then go shopping for the ingredients in the predetermined menu, and everyone would gather on Zoom to cook together, share their dishes, and eat together if participants wanted to stay on the call. Since launching, these classes have become volunteer-led, giving patients and caregivers the chance to plan the meals and lead the classes. Some recent dishes include chicken stir fry; fusilli pasta with sausage, artichoke, and sundried tomatoes; a chicken enchilada casserole; and cauliflower rice.

Virtual Support Groups - In addition to cooking classes, Harboring Hearts offers virtual support groups in partnership with social workers. At their virtual events, a facilitator or volunteer is often invited to lead meditation, yoga, or art therapy.

Heart Art - The Heart Art project is a form of art therapy for patients and their loved ones and caregivers. They can create a piece of art, which Harboring Hearts then puts on a product like a shirt, pillow, or mug and sells through their Heart Art Shop. All the proceeds go toward the emergency fund.

Hope 4 Hearts - As with events like virtual cooking classes and, previously, Heart Parties, Hope 4 Hearts gives patients a day of fun, entertainment, and distraction. Patients who are well enough and their families are given a personalized day of adventure in New York City. A car picks them up to take them into the city, and Harboring Hearts plans the activities for the day from start to finish.

Caregiver Food Delivery - Over the past few years, Harboring Hearts has increased its reach to help caregivers and their family members who are at the patients’ bedsides in the hospital. Food is delivered directly to them, allowing caregivers, families, and patients to enjoy a meal on long days spent at hospitals for appointments and tests.

Harboring Hearts participated in a research study with the National Alliance for Caregiving aimed at helping patient advocacy groups shape their support for and interactions with diverse family caregivers. You can check out the study here.

Community is Key

Nikkya said one easy way that SODA’s supporters and those who want to further their advocacy of organ, eye, and tissue donation can support Harboring Hearts is by sharing their posts on social media to raise awareness for their work and mission.

“We are a very small team at Harboring Hearts. We have three full-time staff members, one part-time staff member, and one intern,” Nikkya said. “So, we do a lot with a little. Year over year, we’ve increased the number of families we’ve worked with and been able to help, … and that includes our heart, pediatric kidney, and liver patients.”

Although Harboring Hearts began as an organization helping cardiac surgery patients, they were able to extend their support to heart transplant patients in 2018 through a grant from the philanthropic arm of their local Organ Procurement Organization, LiveOnNY. In 2019, they expanded further to support liver transplant patients and, later, kidney transplant patients.

Through their partnerships with the LiveOnNY Foundation and Donate Eight, the founding and primary fundraising organization for the LiveOnNY Foundation, Harboring Hearts has helped more than 750 heart, liver, and pediatric kidney transplant patients with food, transportation, and hotel assistance since 2018.

We support two chapters with help from LiveOnNY! See the full list of our chapters.

“The transplant community is a community regardless of the organ,” Nikkya added. “We are grateful to have the opportunity to help in this way.”

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