CommArts Students Produce Feature Video for Nonprofit  

In 2017, Kristie DeMarco's health started to deteriorate and after two years of searching for answers she was diagnosed with Refsum disease. Now she is on a mission to find better therapies and ultimately a cure, which led her to establish the Global DARE Foundation in 2019.

A team of Seton Hall students in the College of Communication and the Arts have produced a feature video for an organization dedicated to educating the public and scientific community about the rare disease known as Refsum Disease, a metabolic disorder caused by a number of faulty genes.

Because Refsum is so rare (1 in 1,000,000), appropriate diagnosis for the disease can be challenging and misdiagnosis for the condition is said to be rampant. The Global DARE Foundation was started in 2019 to spread awareness of Refsum and to provide resources, information and all-important food testing for people with Refsum Disease, who need to avoid eating foods that contain phytanic acid – a type of fat not listed on ingredient labels. Dedicated to finding a cure and better therapies, DARE stands for "Defeating Adult Refsum Everywhere"; Refsum can be fatal if not treated. 

"When it comes to Refsum, not knowing can be a death sentence," said Professor of Visual and Sound Media Thomas Rondinella, M.F.A. "So we were only too happy to be a part of this awareness campaign. The video these students produced could have cost this nonprofit thousands if not tens of thousands of dollars. Instead, our students gained valuable experience and the Global DARE Foundation received a vital tool in combating this debilitating disease."

CommArts students produced the video, which runs about five minutes, as part of their coursework in Visual and Sound Media, which offers concentrations in five areas: Film (Digital Cinema) Production; Media Studies; Sound Production and Engineering; Sports Media; and Television Production.

The students were drawn from the "Video Field Production" classes of Rondinella and William Pace, faculty associate of Digital Media Production, both of whom have extensive experience in filmmaking beyond the classroom.  

The Lead Producers on the project, "Refsum Disease - We DARE to Believe," were students Joseph Nardone and Claire Wolfe and the Lead Editor was Blaise Cauvin. Camera, lights, audio and interviews were handled by Brian Apicella, James Bliss, Joseph Camarota, Zamantha Florez, Nick Foti, Brandon Harley, Connor Hester, Sean Houston, Ryan Johnston, Michael Leniart, Holland Loghing, Sam Mirzaaghasi, Justin Nunez, Louis Pasculli, Dominic Perri, Matthew Quarles, Jaylyn Smith and Haley Zemek.

"This project was essentially a hallmark of a Seton Hall education in visual and sound media," said Pace. "In our classes each year students learn to write, produce and cut a film of their own creation. Often, I'll bring a project in and we'll work on a short film as a class, later entering it in festivals throughout the country. In this class, we had a client, and that too is an important lesson: corporate and commercial videography is a multi-billion-dollar industry and presents a viable and rewarding career path for many."

Global Dare Foundation President Kristie DeMarco, a former triathlete and current Global Head of AML Operations for TD Bank, said, "In 2017 my health started to deteriorate and after two years of searching for answers I was finally diagnosed correctly with Refsum disease." She continued, "In those two years I could have been receiving treatment. No one should have to go through that and I founded this organization so no one would have to. This video will go a long way in raising awareness and making that a reality."

View the video, "Refsum Disease - We DARE to Believe."

Categories: Arts and Culture