World premiere of documentary about rare disease set July 25

A project chronicling a daughter’s passion and potentially opening the door for more understanding of a rare disease comes to completion in late July with the world premiere of a documentary produced by two Penn State alumni.

“Project Scleroderma: Beneath the Surface” will premiere 7:30 p.m. July 25 at the Ritz East Theatre, located at 123 S. Second St. in Philadelphia. Tickets may be purchased online.

Bill Connell and JC Costa have worked for more than two years with Christy McCaffrey to conceive, garner support for and produce the documentary. McCaffrey’s mother died from scleroderma in 2009. According to the Scleroderma Research Foundation, the disease is a chronic connective tissue disease with hardening of the skin as one of its more visible manifestations. The disease, which is not cancerous, contagious, infectious or malignant, impacts about 300,000 people in the United States.

“Still, not a lot of people know about the disease. There’s an active and engaged community of those impacted, but the disease is not all that well known in the general public,” said Costa, who earned his telecommunications degree in 2007. “The film shows Christy’s journey to learn more about the disease that took her mother, while giving many patients a platform to tell their stories.”

Costa and classmate Connell, who earned his film-video degree in 2007, are the co-founders of New Pace Creative and New Pace Productions, both in Ardmore, Pa. They have been working on the project since 2011, when McCaffrey told Costa, a high school classmate, she wanted to do something to raise awareness of scleroderma.

“She knew we had a video production company, but I knew it was not going to be easy,” Costa said. “We were going to need to conduct research, determine the storyline, raise money … even then I told her it seemed like it could take two years to really do it right.”

It turned out Costa was correct. Almost two years later, the world premiere has been set.

The project that started with brainstorming meetings to build ideas for a film eventually included connections with people impacted by the disease all over the world, some social media savvy, trips to Los Angeles and New York and valuable support from a recognizable entertainment and TV personality who was quite familiar with the disease.

“It’s been quite a journey,” Costa said. In some ways it’s a journey that ended where it began.

As Costa and Connell conducted research and crafted a plan, they reached out to comedian and TV personality Bob Saget, a Philadelphia native whose sister had died from scleroderma. While they waited for a response, they moved forward on several fronts, including an online crowdfunding effort. They hoped to raise $30,000 to help with expenses for the film, and they attracted the attention of the San Francisco-based Scleroderma Research Foundation in the process.

“We were still about $7,000 short with seven days to go when they contacted us,” Costa said. “As we were talking, we mentioned how we're trying to reach Bob Saget, and they told us he was on their board -- which seemed kind of like a sign. They told us if we reached our goal Bob and the foundation would come on board and bring their expertise and support to the project. That was huge.”

From there the project move ahead a little more quickly. They connected with people impacted by the disease all over the world and they did so in an efficient and ingenious manner -- sending small portable cameras to people in Argentina, Australia, Guatemala, the Netherlands, Spain and the United Kingdom.

They also made connections in Los Angeles and New York through Saget’s “Cool Comedy Hot Cuisine” charitable events that benefit scleroderma.

“It was all pretty exciting,” Costa said.

The resulting documentary focuses on McCaffrey’s search for additional information and understanding about the disease that took her mother. It’s told by many others impacted by the disease and narrated by Saget.

Along with its raising awareness and spreading information about the disease, Connell and Costa plan to submit the documentary for film festivals and hope to secure a distribution deal. Those remain secondary goals, though. They’re happy to have taken the project from concept to completion.

“It was truly a labor of love," Costa said. "The satisfaction from the way the patients and research foundation have reacted -- their appreciation, love and thankfulness -- there’s no monetary value for that. It’s just great to help make a difference.”

Last Updated July 17, 2013