RAISING SCLERODERMA AWARENESS
MISSION
Project Scleroderma’s two-part mission is to raise the global level of scleroderma awareness as well as to help support the patient community as they work to cope with the challenges presented by this rare autoimmune disease.
THE STORY
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 a diagnosis with Scleroderma can be for patients, both physically and emotionally. She saw that there was a severe lack of awareness and that patients living with Scleroderma truly needed to be seen and heard. Patients were eager to share their stories, they simply needed the outlet to do so. She also came to understand that scleroderma research and the advancements necessary to finding a cure were suffering as a result of this lack of awareness.
With all this in mind, Christy was then inspired to create an organization that would focus primarily on finding new and creative ways of raising the global level of awareness of this disease. Project Scleroderma uses documentary style videos and films as a vehicle for awareness, highlighting the stories of those who suffer from the illness and working to continually garner more attention for the cause. Project Scleroderma also creates patient support video series that are intended to help patients feel a greater sense of
community and support.
Since 2011 Project Scleroderma, in partnership with New Pace Productions, has created over 40 videos for Scleroderma awareness and patient support. The first of which was a feature length documentary film titled, “Beneath The Surface”, which was co-produced and narrated by the late Bob Saget and in partnership with the Scleroderma Research Foundation. Click here to watch “Beneath The Surface”.
Project Scleroderma’s most recent film titled, “Run Greg Run”, is currently being shared on the film festival circuit with plans for a wider release in 2023. For more information and updates on this film, click here. Aside from these two larger film projects, Project Scleroderma has produced a wide range of awareness and patient support videos that can be viewed and shared via The Project Scleroderma Patient Support and Awareness YouTube Channel.
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