SCLERODERMA
EXCHANGE
Published by Scleroderma Foundation/Tri-State, Inc. Chapter Binghamton, New York Volume 2, 2015 www.SclerodermaTriState.org
To provide educational and emotional support to people with scleroderma and their families
M I S S I O N
To stimulate and support research designed to identify the cause of and cure for scleroderma as well as to improve methods of treatment To enhance the public’s awareness of this disease
New Scleroderma Legislation The Scleroderma and Fibrosis Research Enhancement Act of 2015 With the 114th Congress now underway and both the Houses of Congress under new leadership, our advocacy efforts must adjust to the current political climate in order to best advance our advocacy goals. With that in mind, the Scleroderma Foundation’s Advocacy Program is reshaping the approach by which we seek to advance our core message: more needs to be done to find better therapies, the cause, and a cure for scleroderma. The Advocacy Committee has worked with scleroderma champions in both Houses of Congress to draft legislation that can advance our community’s needs and be acceptable in the current political climates. “The Scleroderma and Fibrosis Research Enhancement Act of 2015” is the title of the bill we are seeking to introduce. 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 and NIH adopt a multi-discipline approach to research that can have a high impact not only on scleroderma, but on numerous other conditions and millions of lives. Additional background behind this approach as well as instruction on how to take action is available on the Scleroderma Foundation’s Advocacy page which is found at www.scleroderma.org/ advocacy.
Join us on facebok, twitter and instagram in spreading the word about scleroderma during the month of June.
Scleroderma Awareness: Hard Word. Harder Disease. During June Scleroderma Awareness Month, the Scleroderma Foundation, along with the Scleroderma Research Foundation and the Scleroderma Society of Canada will again join forces to heighten awareness of scleroderma. The 2015 awareness campaign continues with the theme: Scleroderma: Hard Word. Harder Disease. At the heart of the campaign is social media. In particular, we are engaging with professional bloggers who write on life and medical/healthcare issues. These bloggers have international followers – literally thousands of people across North America and the globe – who will read about scleroderma possibly for the first time, thus extending awareness about the disease to new audiences. Additionally, the campaign will engage in sending out messages via Facebook and Twitter, utilizing pictures as well as infographics and written messages. Several patients from the Scleroderma Foundation Rocky Mountain Chapter will serve as the
face of the campaign reinforcing the personal nature of scleroderma. Throughout the month we encourage TriState members and friends who use social media to share these blog posts, Twitter messages and Facebook posts. Keep an eye out on our Facebook (www.facebook.com/ SFTriState) and Twitter (@sclerodermaTS) pages, as sharing is a simple way to educate your friends. Each message will direct people back to a special website created for the campaign, SclerodermaAware.org where people can learn more about scleroderma. Key to the campaign, as it was last year, is driving people to the Web site to “take the pledge” to tell at least one other person about scleroderma, either through conversation, or sharing the campaign messages to their social media followers, friends and family. We’re excited to roll this campaign to the local, national and international social media world.
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