Advocates on Steps of Congress 2013
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What is Advocacy?

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Tell your senators and representatives that scleroderma is important to you!

become an advocate buttonAdvocacy is the act of educating the public about an issue, supporting or defending a cause, and recommending an action.

During an election cycle, all eyes turn to national, state and local politics. The Scleroderma Foundation advocates on the behalf of the entire scleroderma community throughout the entire year, whether there is an election or not. Several times a year, scleroderma patients and family members visit their Congressional leaders in Washington, D.C. This important action has helped us cultivate new relationships with elected officials and strengthen existing relationships with others.

Over the next few months, we will continue to share your scleroderma stories throughout the halls of Congress. This is an exciting time and we hope you will be a part of it! Become a scleroderma advocate today! 

“The Scleroderma and Fibrosis Research Enhancement Act of 2015"


Working with representatives of the Scleroderma Foundation, Congressman Peter King of New York has drafted legislation to organize and advance research in fibrotic illnesses using scleroderma as a prototypical fibrotic condition for research.  This legislation is called The Scleroderma and Fibrosis Research Enhancement Act.

 This legislation will:

  • Create a Commission of leading scientific experts to work together to draft a comprehensive long-range plan for systematic research in this area.
  • Establish a Working Group at NIH to assist with implementing the research plan and coordinate research activities.
  • Help to eradicate millions of deaths each year that are attributed to chronic fibrotic illnesses through focused and timely scientific progress.

Important political facts about this legislation:

  • It is bipartisan (both Democrats and Republicans support it). 
  • It is budget neutral (the bill will not increase federal spending).
  • It is not disease-specific (it would help scleroderma and all fibrotic illness). 

The only way your Congressperson will consider supporting this effort is if a constituent officially asks him/her to do so. The more legislators that support this bill, the better the chance it has to be passed into law



With the advent of each new Congress (an event that happens every two years) there typically comes political changes and the leading parties gain or lose majority control of one or both Houses of Congress.With the 114th Congress now underway, both the House of Representatives and the Senate are under new leadership, including the leadership of all  Congressional committees.  With such changes, the art and process of advocating for important causes must adjust to new political and Congressional priorities.  

The Scleroderma Foundation’s Advocacy Program must also evolve to reflect the mood of the electorate as a whole, as represented by Congress, and adjust the approach by which we work to advance our important message:  that more needs to be done to find better therapies, the cause, and a cure for scleroderma. 

We have worked with our scleroderma champions in both Houses of Congress to draft legislation that can advance our community’s needs and be acceptable in light of changing political climates.“The Scleroderma and Fibrosis Research Enhancement Act of 2015” is the title of the bill we are seeking to introduce.  

Why?  Recent studies suggest that nearly 45 percent of all deaths in the developed world are attributed to some type of chronic fibro-proliferative disease, affecting millions of Americans.  Scleroderma (systemic sclerosis) is a disease that creates fibrosis (scarring/sclerosis) in various organ systems of the body.  Therefore, systemic sclerosis can be considered a “prototypical” disease for study and any insights gained into its cause, or therapies that can address its complications, are likely be applicable more broadly to other forms of organ fibrosis and fibrotic illness, such as pulmonary fibrosis, liver fibrosis, etc.)

The Scleroderma and Fibrosis Research Enhancement Act of 2015” calls for the establishment of a national commission on scleroderma and fibrosis with a membership that includes multiple working groups across medical and research disciplines representing  the various organs and systems impacted by fibrotic illness.  This commission, under the auspices of the National Institutes of Health, will be tasked with creating a long-range plan within 18 month that focuses on opportunities and challenges in scleroderma and fibrosis research with recommendations that act as a blueprint for relevant research activities over the next decade.

With those recommendations from the National Commission, a Scleroderma and Fibrosis Working Group will be formed under the direction of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to facilitate and oversee implementation of the plan’s recommendations and research priorities.The Scleroderma Foundation has modeled this advocacy plan and language of the bill on other disease-specific bills that have successfully advanced through Congress.  This bill does not create any new spending other than what is already appropriated to the National Institutes of Health, but it does encourage and require multiple institutes at NIH to collaborate on research that can have a high impact not only on scleroderma, but on numerous other conditions as well.

Unraveling the mysteries of scleroderma/systemic sclerosis obviously has great benefit to those living with this disease, but we cannot ignore the fact that finding new therapies, the cause, or a cure for scleroderma has the potential to benefit a significant number of fibrotic conditions.  

By leveraging scleroderma/systemic sclerosis as the prototypical disease model to study, as our bill seeks to do, we can bring more people together to work collaboratively with the hope of advancing the science at a faster pace.  Driven by science and where it leads us, as well as our continued commitment focus more research on scleroderma/systemic sclerosis, we are excited about our message to law makers in this Congress.  And once the bill in introduced, we will count on you, the scleroderma community, to help us get our message heard, as we’ve so successfully done in the past. 


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