The Scleroderma Research Foundation’s government affairs program is a strategic bipartisan effort to educate government officials and representatives as to the seriousness of scleroderma. The program advocates for heightened awareness and increased government spending on scleroderma research to improve patient quality of life and expedite the search for a cure. The SRF is committed to ensuring lawmakers understand and appreciate the disease’s significance when debating issues on Capitol Hill. Scleroderma afflicts as many people as muscular dystrophy, multiple sclerosis, cystic fibrosis, or ovarian cancer, yet research is vastly underfunded in comparison. SRF’s government affairs program aims to eliminate the research gap and increase funding to more equitable levels.

Guided by information from constituents and their own personal convictions, members of Congress use the President’s budget to appropriate funding to U.S. Health and Human Services programs, including the National Institutes of Health (NIH). The NIH consists of 27 separate components, mainly institutes and centers, and is the world's premier medical research organization, supporting some 35,000 research projects nationwide in diseases like cancer, Alzheimer's, diabetes, arthritis, heart ailments, AIDS and scleroderma.

One such institute, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), is responsible for the bulk of nationally-funded scleroderma research. NIAMS funds both public and private scleroderma research (including some of SRF’s scientists) and works specifically to support research into the causes, treatment, and prevention of diseases like scleroderma, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress.

The Scleroderma Research Foundation works to build meaningful relationships with the NIH, NIAMS, and the executive and legislative branches of government to build a partnership in the search for a cure.

The need for a more aggressive approach to Capital Hill is high.  In the past, there have been meetings with Congressional leaders and U.S. Presidents that resulted in increased spending and a National Scleroderma Awareness Month.  Scleroderma is still seriously underfunded compared to other diseases with similar size patient populations and visibility needs to be increased. 

The long-term success of SRF’s Government Affairs program is dependent upon you – the American citizen who is disturbed and moved to action by this tragic disease.

The right – and responsibility – of individuals to openly express their views and opinions regarding legislation and public policy is fundamental to representative democracy. If scleroderma is to become a solvable problem, more people must come forward and a consensus must be reached so that increased funding can be made available to support the highest quality research.

You can help pave the road to a cure by contacting your representatives at the local, state, and federal levels to ensure scleroderma research develops into one of many important priorities on the scientific/political agenda.

Even in today's high-speed, high-tech world of communications, the letter is still the most frequently used, and effective, method of communication with public officials. Governors, mayors, senators and representatives pay close attention to their mail, not only because they are interested to hear what their constituents have to say, but also because they know that each letter represents a vote!

The most effective letter is a personal one, not a form letter – and not one outlining your personal hardship with scleroderma (or another issue). The letter should be concise, informed and polite, stating clearly the need for increased federal funding of scleroderma research.

The Scleroderma Research Foundation welcomes your comments and participation in the effort to educate our nation’s leaders about this devastating disease.  Write your representatives or call the Scleroderma Research Foundation for additional information about the SRF’s government affairs program.