Fort Myers Film Festival screens documentary raising awareness about sarcoidosis
The 13th annual Fort Myers Film Festival kicked off Wednesday evening and includes screenings of 79 new independent and international films. One featured documentary, in particular, stands out because it was produced by a Fort Myers man with an intensely personal connection to the film’s subject matter that’s forever changed his perspective on life.
In the 24-minute documentary “Warriors: The BERNIE MAC Disease,” Rhonda McCullough-Gilmore takes viewers on a journey through the life and legacy of her late husband, the famed comedian Bernie Mac, and the impact his battle with sarcoidosis had on his life. Sarcoidosis is a complex disease in which inflammatory cells called granulomas form in potentially any organs. Mac died of the disease in 2008 at the age of 50.
The film serves to raise awareness about sarcoidosis, for which there is no known cure, and which is often misdiagnosed.
The film was directed by Nicholas Markart and produced by his uncle, Fort Myers resident Steve Hilfiker, who had his own harrowing experience with cardiac sarcoidosis.
“The disease was misdiagnosed for five years and ultimately I was told that I would die if I didn’t get a heart transplant and I needed it right away. I was in stage D heart failure,” said Hilfiker on WGCU-FM’s “Gulf Coast Life Arts Edition.”
Hilfiker, a father of four, was admitted to Tampa General Hospital in the summer of 2020, where a heart transplant from a 31-year-old man named Daniel saved his life.
“Daniel is with me every day, of course both literally and top of mind. I would not be here without his sacrifice, his gift of life,” said Hilfiker.
“After you go through an experience of heart transplantation, you really want to give back and that starts with the family. I’ve met Daniel’s sister Vanessa Blais, and we’ve had some very exciting journeys. We’ve toured Elton John shows together. I hold a sign saying ‘heart transplant from Daniel.’ She holds a sign saying ‘Daniel’s my brother.’ That’s made a pretty powerful impact on social media.”
In honor of his heart donor, Hilfiker founded the Daniel Foundation for Organ Donation and Sarcoidosis Awareness. He also founded another nonprofit called The Foundation for Early Detection and Sarcoidosis Awareness, Inc.
Hilfiker said getting Bernie Mac’s widow and the Bernie Mac Foundation on board with the film was simply a matter of expressing his personal mission of increasing global awareness of the disease.
“That directly aligned with their mission statement. So, the task was fairly easy once they heard the power, the passion and the intent of our request to film. After that, they welcomed us as family,” said Hilfiker.
In addition to putting a spotlight on Bernie Mac’s decades-long struggle with the disease, the film also includes interviews with people living with sarcoidosis throughout the U.S., in Germany and in Ghana.
“We’ve had some powerful international participation, and participation from major foundations in the United States to gain access to some incredibly meaningful stories,” said Hilfiker.
“Sarcoidosis is not as rare as the literature suggests, and we’re on a mission to raise awareness using the particular film as our first project.”
Hilfiker and Markart’s filmmaking partnership began with the 2021 short documentary “Stoneheart: An Undying Gift” about Hilfiker’s heart transplant experience. That film was screened at the 2022 Cannes Film Festival and garnered an award of excellence last fall from the Global Shorts International Film Competition in Los Angeles.
Even as their newest film “Warriors” makes the rounds of the film festival circuit, Hilfiker says he and Markart are already hard at work on their next film project, which will be a feature-length documentary.
“We have 42 interviews on four continents. I think it’s actually getting closer to 50 interviews now with clinicians, heart transplant survivors. I think our next work is going to focus more on organ donation,” said Hilfiker.
“This is the beginning of some outstanding future films, documentaries, and we’re even working on a narrative drama.”
Through the power of film, Hilfiker is on a mission to increase awareness of sarcoidosis, help advance methods of early detection and reduce misdiagnosis, and increase the pool of organ donors to reduce the number of people who die while waiting in line for a transplant.
“Warriors: The BERNIE MAC disease,” will be screened through the Fort Myers Film Festival Thursday, May 18 at 6 p.m. at the Sidney & Berne Davis Art Center.
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