Project Scleroderma | Catching Up with Project Scleroderma
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Catching Up with Project Scleroderma

In the beginning, all Christy knew was that she wanted to do something to raise awareness of Scleroderma. But, exactly what – she had no idea. A new and creative approach was of great importance along with as immediate an impact as possible. The answer didn’t come from writing down a list of ideas or scouring the Internet for research on charity campaigns. It came from her living her everyday life.

Around that time, Christy had taken an interest in watching documentaries on a number of different topics. “What I found in watching this style of film,” she says, “is that the way in which documentary stories are pieced together, so raw and honest, connects the viewer to a desire to want to understand more deeply – whatever the content of the film.” And, from here, her vision began to unfold.

“I could see patients telling their stories, sharing their hopes and fears, giving the audience an honest view into their lives with Scleroderma; and, thus, inspiring the viewer to [learn to] understand the disease more clearly.” She envisioned doctors explaining information about the disease and the need for further research. And, she also envisioned a truly personal connection in sharing her story about losing her Mom to the disease. “My vision was to speak to the viewer in a real and honest way and to share the universal truths of life: loss, love, pain, struggle, hope, inspiration…we are a part of it all, the good and the bad.”

When Christy approached JC with her idea, he was glad to help his longtime friend, but wanted to make sure that she knew what the process was going to entail. He told her that they were first going to have to raise funds to get the project up and running and that she should expect the process to take a long time. “I warned Christy that it could end up being a few years to get through,” he says, “I thought it could be shorter, but I wanted to prep her for that.”

JC’s business partner, Bill, agreed that this was an important project for them to get involved in. The pairs’ previous experience with documentary filmmaking was working with a music band to tell the story of how they formed and progressed from there. Project Scleroderma would be much different. “This was much more a documentary about making a documentary,” says JC. “This was a journey we were watching unfold as we went along, so we had no idea what to expect.” Bill feels the same way. “[This time] we were helping form the story – beginning to end – whereas, in the past, some of those components had already been in place.”

As the project began, all three members of the team had vague ideas about what to expect, but all felt, for the most part, like they were heading for the unknown. They wanted to make an impact, to be successful in bringing about more awareness of Scleroderma, but weren’t sure just how far their project could reach. One of the first necessities was fundraising. And, from that early stage, a very promising future was revealed.

During the Indiegogo.com fundraising campaign, the message of support was spread across all social media outlets by patients, family, friends and even complete strangers around the world. Patients also inundated the team with expressions of immeasurable gratitude. “It was beautiful to watch,” says Christy. “It was then that it became clear to me that even if we didn’t reach our goal of $30,000, we had already made a difference. And, if we could reach $30,000 and continue on with the production of this film, that the impact we could make for this disease had the potential to be far greater than I ever could have imagined.”

JC admits that he truly had no idea what to expect from this experience. He also cites the fundraising experience as a real moment of realization. But, of even more significance was when the Scleroderma Research Foundation and Bob Saget joined the project. “My first conference call with Bob and Charles Spaulding was pretty surreal,” says JC. During this conversation, Spaulding talked about the abundance of requests they regularly receive for similar partnerships and explained that Project Scleroderma was the first they were teaming up with. “They took note of what we were doing and were compelled enough to partner with us,” says JC. “That to me blew my expectations away.”

While JC warned Christy in the beginning about the money and time that would be involved in moving forward with the process, she also explained to him and Bill that there would be emotional aspects they should be prepared for. She told them that they would become significantly invested in these patients and their struggles. “That one-hundred percent happened over time,” says JC. “Initially we were just helping a friend with a cause she believed in,” explains Bill, “but it has evolved into much more. I am forever connected to Scleroderma now…I feel like this is something I have to do now and not just something I want to do.”

One particularly memorable experience for Bill occurred while conducting interviews of patients at the Johns Hopkins Hospital. “We were using a lav mic that clips onto the collar of the subject’s shirt to record some of the audio. When we were finished with one patient, I asked him to unclip the mic himself. He was unable to do this because of the condition of his hands…it opened my eyes to the little things these patients had to deal with on a day-to-day basis. These are things you don’t initially realize because they might not show outward signs of being sick.”

It’s moments like these that contribute to the unavoidable reality that becoming so invested in a cause like Scleroderma awareness and going through the process of documenting the lives of so many people affected by disease can’t happen without also enduring much emotional upheaval. The concept of filmmaking may have a certain veneer of romance, but the reality for these three is that they are spending vast amounts of time immersed in a world that is full of pain, struggle and heartbreak. They are people just like the rest of us – only human. And, to avoid any type of emotional breakdown would seem impossible.

Just a few weeks ago, Christy had a moment during filming where her emotional tolerance reached its limit. She talked about just how hard the process was for her – for all of them. Both JC and Bill were glad that she was able to express these honest feelings in this way because it showed the viewer the raw truth about all sides of their experience – the same elements that had initially drawn Christy to the idea of creating a documentary. JC also discusses how emotionally difficult it is to have a main subject of the film who is also such a close friend. “You want to get the best footage,” he says, “but walk a tight rope of wanting to stop the camera and console your friend.”

Although it has been difficult at times, the team has endured and made amazing strides. They have reached a stage in their journey where the visions in their minds will soon be viewed by so many around the world. After gathering the final footage needed, they will start to weave all of the many story threads together to create a powerful representation of the Scleroderma reality. They plan to enter the film into festivals, as well as to have it shown on the Internet and television, so that it can bring about more global awareness. “It is this piece of the plan that I feel will be most impactful,” says Christy. “The more audiences we can expose to Scleroderma [awareness], the better chance we have of fulfilling our true mission.”

Christy’s dream for the impact the film has on the world does not end with those connected to Scleroderma, either. “My hope is that this project can inspire others to focus more on making changes and taking positive action as opposed to being swallowed up by the fear that tells us we are helpless and can’t do anything to change the fact that disease, in general, exists.”

Christy
rachel@missmerkledesign.com
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