What is Advocacy?
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Advocacy 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"
Senator Kirsten Gillibrand (D-NY) is prepared to introduce the Scleroderma and Fibrosis Research Enhancement Act,but she needs a Republican Senator to join her and lead this effort. Any Republican Senator can become a scleroderma champion, but first they need to be educated by the people they represent. Some Senators are particularly well-positioned to lead this legislation based on their positions on key Committees or their leadership on rare disease issues.
If your state is represented by a Republican Senator, the community needs you to make the commitment to reach out to their office on Capitol Hill and aske them to lead this important legislation.
TAKE ACTION! If you live in AL, AK, AR, AZ, CO, FL, GA, ID, IL, IN, IA, KS,KY, LA, ME, MI, MO, MS, NE, NV, NH, NC, ND, OH, PA, SC, SD, TN, TX, UT, WV, WI, WY - PLEASE SEND AN E-MAIL TO YOUR SENATOR NOW! click here
Learn more about THE SCLERODERMA AND FIBROSIS RESEARCH ENHANCEMENT ACT OF 2015
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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