As a community, scleroderma advocates are focused on outreach to United States Senators and Representatives to increase their understanding of scleroderma and its dramatic impact on the health of individuals and families. Symptoms of scleroderma can derail a person’s life and end a career or cause isolation from peer groups and society.
Congressionally Directed Medical Research Program
Most recently, volunteer scleroderma advocates have contacted their Senators to encourage them to support the $5 million line item for scleroderma peer-reviewed research program in the Congressionally Directed Medical Research Program (CDMRP) of the Department of Defense in the Senate’s FY2022 bill. Military service-associated environmental triggers, particularly silica, solvent, and radiation exposure are believed to be linked to the onset of scleroderma in individuals who are genetically predisposed to the condition.
In the past, with enthusiastic leadership from former U.S. Representative Peter T. King (R, NY 2nd), Foundation advocates worked to build support for a bill called the National Commission on Scleroderma and Fibrotic Diseases Act of 2019. The purpose of the bill was to establish a National Commission on Fibrotic Diseases within the National Institutes of Health that would recommend improvements regarding fibrosis and fibrotic disease research.