Grantee Partner Spotlight:
Heart of a Giant Foundation

Photo of a large group of at least thirty people standing together and posing for a photo at an outdoor event with event tents and banners in the background and trees and houses further back in the background. Included in the group are VADP recipient Bouba Dieme, second from left standing and Julius Johnson, standing eight from left, a young man who shares a VADP and who Bouba has helped at the Boston Heart walk at the Esplanade on September 7, 2019 in Boston, Massachusetts. (Staff Photo By Jim Mahoney/MediaNews Group/Boston Herald)
Bouba Diemé (back row, second from left) with HGF supporters at a Boston American Heart Association Heart Walk

DCM, CHF, VTAC, AFib . . . if these acronyms are unfamiliar to you, consider yourself lucky. For many Americans, terms like dilated cardiomyopathy, congestive heart failure, ventricular tachycardia, and atrial fibrillation are an everyday part of managing heart disease, the number-one cause of death for both men and women of most racial and ethnic groups in the U.S.

Many people don’t even know how closely at risk of a cardiac episode or stroke they may be. At heart health screenings conducted by LZF grantee partner The Heart of a Giant Foundation (HGF), it’s not unusual for irregular heartbeats to be detected. During one recent event, the nurse practitioner informed an unsuspecting participant that he was in AFib and needed to go to the hospital right away.

In 2012, a similar warning changed the life of Bouba Diemé, the founder and CEO (Chief Encouragement Officer) of Heart of a Giant, when, as an otherwise healthy 26-year-old, he had to go on heart medication after having chest pains and difficulty breathing. Four years later, while a fellow in the Mandela Washington Fellowship for Young African Leaders at UC Davis, he was diagnosed with a rare congenital heart defect (left ventricular non-compaction cardiomyopathy) and told that this time, medicine wouldn’t be enough; he would need a new heart. And at 6’7” tall, Bouba knew he might be waiting a while for a heart that could fit his frame.

a standing woman wearing a white sweater under a blue vest, black pants, and a surgical mask holds papers in her left hand and a writing utensil in her right as she looks intently down at a person with their right arm resting on a table with a red cloth in it with a blood pressure sleeve on, sits in front of them wearing a black coat, a black hat, and a red mask
Community blood pressure screening with the Heart of a Giant team

With family and friends back home in Mali and Senegal, Bouba decided to start a blog as a more practical way to keep everyone informed of his health and family life in the U.S. with his wife and three sons. Six years passed, and a LVAD (left ventricular assist device ) was implanted in his heart to help his cardiac function. Then, one Friday afternoon in October 2022, Bouba got the call to go to the hospital for his new heart. He was transplanted the next day.

During his journey to the transplant, Bouba was re-examining his life goals. Originally an engineer and founder of an energy services company, he was now considering medical school to dedicate his life to helping other heart patients. Instead, he turned his blog, which he called “Heart of a Giant,” into a grassroots organization to educate the community about heart health, and with his wife, Desirée, began researching how to create a nonprofit.

Now, Bouba is being coached in nonprofit management with a group of peers in The Lenny Zakim Fund’s Transformational Leadership Cohort (TLC) Program. “This program has been the most impactful thing for me, connecting with other nonprofit leaders and getting training in all aspects, from financial and fundraising to board development,” he says. “Through the coaching, they don’t just tell you what to do; they make sure you can do it.”

Like many of the other 11 grassroots leaders in his cohort, Bouba has a full-time job and a family to support, in addition to running his nonprofit. What sets him apart, though, is the perspective he’s gained from being one of fewer than 55,000 heart transplant recipients in the world.

“My six-year journey to getting a heart transplant taught me how to ask for help and connected me to so many people, which made me realize how much I could do as a nonprofit leader,” Bouba says. “I’ve learned just to keep knocking on doors until I get what I need.”

“Grants are a numbers game,” he continues, “so I’ve sent out a lot of proposals, but I also follow up on rejections and try to get advice. And that’s led to some pretty wonderful things, like when the Blue Cross Blue Shield Foundation of MA called me back after I’d been declined and told me they had an extra $23,000 that they could give us!”

In just the past year, Bouba and his team of volunteers and contract medical assistants have conducted heart health screenings for more than 400 people. They continue to coach many of them in monitoring and improving their health and self-advocating with doctors and nurses. Goals for the near future include moving into telehealth, improving data collection, and documenting Heart of a Giant’s “playbook” to help other organizations replicate parts of their model.

“Once your goals are clear, you start seeing opportunities very soon,” Bouba says. “That’s one of the key things I’ve learned through my work with the LZF Cohort. Also, that connections are pivotal. Staying connected to others is what makes things happen.”

Current needs at HGF include funding/donations and volunteers to assist with screenings, primarily volunteers with medical expertise. If you want to get involved, please contact Bouba Diemé at bouba@heartofagiant.org or use the contact form on the HGF website.