Have you heard of sarcoidosis? Most people haven’t. I had cardiac sarcoidosis. It was misdiagnosed. I was told I had stage D heart failure and needed a transplant right away. My heart failed 5 weeks later. I was on life support through a balloon pump and received seven heart offers in three days at Tampa General Hospital.

After my heart transplant in August 2020 was complicated by sepsis, cardiogenic shock, pneumonia, induced coma, and near-death experiences, I made a full recovery and climbed Sharptop Mountain in Jasper, Georgia 90 days after hospital discharge.

Determined to educate the world on this misunderstood disease, film director Nicholas Markart and I made the ‘Stoneheart’ film which screened at the American Pavilion of Cannes International Film Festival in 2022. We proceeded to interview over 50 sarcoidosis warriors, clinicians, donor families, heart recipients, and caregivers on four continents, including Rhonda McCullough, Bernie Mac’s widow.

Bernie Mac died from pulmonary sarcoidosis and wanted to use his celebrity status to inform people across the globe through the Bernie Mac Foundation about this complicated immune system disorder, which is not as rare as literature suggests.

The symptoms are often misunderstood, and the disease mischaracterized. Self-advocacy and awareness are critical. We are honored to advance awareness for organ donation, sarcoidosis, and methods of early detection of cardiomyopathy through films produced by FODASA.

The FODASA team and I look forward to meeting you! We hope to inspire you to pursue your dreams…

… and never give up, no matter what!