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Faces of Scleroderma

In This Issue
SRF Webinar Series
32 Million Americans Have Autoantibodies
Cure Crew - An Inspired New Year!
Top 10 Medical Research Trends
Rare Disease Day

Quick Links

Insights eNewsletter


Dear ,

Everyone affected by scleroderma has a story to share and a picture that says much more than a thousand words. In this issue, we're inviting you to share an image to be included on our Virtual Hero Wall, which can be found on our website beginning next month. We'll also share some of your photos and captions on our Facebook page as an inspiration to others who are struggling with scleroderma or may have lost a loved one to its complications.


To become a part of our growing Hero Wall, just click here to upload a photo and be sure to include a caption of 20 words or less.

Join SRF's Webinar - Friday, February 10, 2012

Please join us along with Dr. Antonios Aliprantis online Friday, February 10, 2012 at 9 AM Pacific Time for the SRF's Webinar: Understanding Scleroderma Research: A Look Inside the Toolbox. 


The third in our series of live webinars, Dr. Aliprantis, Assistant Professor of Medicine in the Rheumatology Division at Brigham and Women's Hospital (BWH) and Harvard Medical School, will take participants on a tour inside the toolbox researchers use to better understand this complex disease.
Register now. 

If you were not able to join us for our previous webinars please visit our site to listen to the recorded sessions.     

32 Million Americans Have Autoantibodies That Target Their Own Tissues  
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More than 32 million people in the United States have autoantibodies, which are proteins made by the immune system that target the body's tissues and define a condition known as autoimmunity, a study shows.

The first nationally representative sample looking at the prevalence of the most common type of autoantibody, known as antinuclear antibodies (ANA), found that the frequency of ANA is highest among women, older individuals, and African-Americans. The study was conducted by the National Institute of Environmental Health Sciences (NIEHS), part of the National Institutes of Health. Researchers in Gainesville at the University of Florida also participated. Read more... 


Click here to read more news regarding scleroderma related research.  

Cure Crew Happenings - An Inspired New Year!


For many, the New Year brings inspiration and resolutions to get in better "shape" - be it physical, financial, emotional or [insert just about anything else we strive to improve upon here]. For this eNewsletter editor, it's a promise to keep his desk more organized!


Despite best intentions to improve ourselves and the world around us, even our best-laid plans sometimes don't come to fruition. Here's a way to take smaller steps, keep your resolutions and have a good time in the process...


SRF staff member Amy Hewitt began the year with a plan: transform her New Year's resolutions into what she's calling her "Inspired New Year". By sticking to her plan, she'll get in better shape, meet new people, have fun and raise both funds and awareness for scleroderma. She's taking a new approach to the classic win-win scenario and making it a 5x winner! Find out how she plans to do it...  


Also, check out volunteer marathon runner Barbara Sheets and learn about her "Amazing Race". Now, she is REALLY inspired.  


This month we are introducing our new Cure Crew eNewsletter. It is specially designed for those wanting to learn more about awareness-building and fundraising. Read about Crew Members who are making a difference. Click here to sign-up!    

'The Doctor Will Call You if Anything Is Wrong'

That's still a common phrase you might hear from the doctor after you've have some lab test, biopsy or imaging study like a CT scan. Sometimes the doctor will say "If you don't hear from me, everything is fine." Well, given the complexity and comprehensiveness of medical exams nowadays, that's probably not a good idea. And honestly, it's never been a good idea to assume no news is good news.

Nearly every physician knows some instance where he/she or a colleague missed an important lab result. Either the report never came to them, or it was misfiled, or they simply didn't notice the abnormal result. In fact, it happens nearly 8 percent of the time. Read more...
Top 10 Medical Research Trends to Watch in 2012

This year, the National Institutes of Health will establish its new National Center for Advancing Translational Sciences (NCATS), created to speed the translation of basic discoveries into therapies that will improve public health. In light of our current fiscal reality (and limitations), we breathed a sigh of relief to see it up and prioritized in the appropriations process.  


Solutions can be tough to develop, and tougher to implement. How will NIH translate its translational focus to its cadre of basic research-focused scientists? Will NCATS strengthen and streamline existing efforts at the 26 other institutes and centers? Will it help to move discoveries out of the lab and to patients more quickly? Read more...  


Visit the Patient News section of our site for more articles to keep you informed.    

SRF Supports Rare Disease Day    


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Join us along with others in the rare disease community in supporting Rare Disease Day - February 29, 2012. This year marks the fifth International Rare Disease Day coordinated by EURORDIS and supported by rare disease national alliances in more than 40 countries worldwide.   


Rallying around the slogan "Rare but Strong Together", activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada and as far as New Zealand! Get involved! 

Respectfully yours,

Amy Hewitt
Executive Director
Scleroderma Research Foundation
Make a Donation 1-800-441-CURE (2873)