Project Scleroderma: Beneath the Surface has recently gained popularity, it was presented on the Oprah show and is highly anticipated by the scleroderma community. But what is this project and how was it started? Christy McCaffrey lost her mother to scleroderma in September of 2009 and she began to think about what she could do to help fight the disease. As time went by, the idea to produce a documentary film started to mature with the help of other people involved in the scleroderma community.
Christy watched her mother struggle with this chronic and incurable disease which causes scarring of the skin and internal organs. The fight was fast and aggressive for Christy’s family and after the death of her mother, she started interacting with other patients to better understand the disease and what it involved. McCaffrey learned about the complexity of scleroderma and how difficult it is for patients to deal with it, both physically and emotionally.
In addition, she noticed a lack of awareness and understanding about scleroderma, but patients were eager to be heard and share their stories with scleroderma. This was the inspiration for Christy to start an organization focused on increasing global awareness for scleroderma. Project Scleroderma was born, with its first big commitment being to produce a documentary, in which patients could share their stories and experiences of scleroderma while educating others about the disease.
“Narrated by Bob Saget, Project Scleroderma: Beneath The Surface is a film that documents the grassroots mission of a young woman from Philadelphia working to raise awareness for a scarcely known disease that took her mother’s life. In this highly inspirational and hopeful story, viewers follow Christy McCaffrey as she works diligently to create a global movement to rally behind the patients who are suffering from this terrible disease,” explains the project’s website.
The documentary film Beneath The Surface was produced with the help of New Pace Productions in June 2011, after an online fundraising campaign. The team secured the funds needed for the production of the film and began to interview patients from all over the world. The scleroderma investigator Dr. Frederick Wigley, MD (who is the director of the Johns Hopkins Scleroderma Center in Baltimore), was also an important part of the documentary team.
In December 2014, the documentary was completed and released and is now available online. “Project Scleroderma’s vision and commitment to the scleroderma community does not begin and end with the production of the documentary film, “Beneath The Surface.” Rather, this film was simply the first step in an extensive, on-going plan to create new and innovative ways to raise awareness of scleroderma,” added the organization.
Throughout June, our resident blogger and scleroderma patient, Nicola Whitehill, posted daily information and facts on scleroderma to celebrate the Scleroderma Awareness Month.
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