Project Scleroderma’s two-part mission is to raise the global level of scleroderma awareness as well as to help support the scleroderma patient community as they work to cope with challenges of life with this autoimmune disease.
After losing her mother to Scleroderma in September of 2009, Project Scleroderma founder, Christy McCaffrey, reached out to patients living with this disease to gain a better understanding of what it was exactly that quickly and aggressively took her mother’s life. Through her interactions with patients, Christy learned more about just how complex this disease is and just how difficult this disease can be for patients, both physically and emotionally. She saw that there was a severe lack of awareness for this disease and that patients living with Scleroderma truly wanted to be heard and were eager to share their stories and champion for their own cause. They simply needed the outlet to do so.
As a result, Christy was inspired to create an organization that would focus primarily on raising the global level of awareness of this disease, and thus Project Scleroderma was born. And the first order of business for this non profit was to produce a documentary film which would allow scleroderma patients to share their experiences and educate the world about this little known disease.
In June of 2011, along with New Pace Productions, Christy set out to produce a documentary film titled “Beneath The Surface”. The intention of this film was not only to allow patients to share their stories, but also to give viewers an accurate medical overview of the disease. After hosting an online fundraising campaign to secure the funds necessary to produce the film, the team went on to interview patients from all over the world as well as leading researcher, Dr. Fredrick Wigley, director of the Johns Hopkins Scleroderma Center in Baltimore, MD. In December of 2014, the team wrapped production on this project and have since released the film (which can be found at www.SclerodermaFilm.com).
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.
Project Scleroderma (a 501 c 3 Non Profit) has a primary mission to raise the global level of scleroderma awareness.