|
Greetings!
This week's Scleroderma Foundation National Congressional Call-in Day on Wednesday the 15th was a tremendous success and showed us, once again, the collective power of the scleroderma community's voice when we all work together. There is no way for us to accurately count how many Foundation members and people impacted by scleroderma called into their elected representatives in the House and Senate, but our message has been loudly heard.
Leading up to Wednesday's Call-in Day, as well as on the day itself, both national and chapter Facebook pages filled with moving stories of people who have lost loved ones to scleroderma and are advocating in their name and memory. The Foundation's Advocacy Web site pages received tremendous traffic, as members sought information on how to reach out to their elected officials. Hundreds of calls and e-mails were also fielded at the Foundation's national office as well.
A Resounding Success: The "Scleroderma Research and Awareness Act" was unanimously approved by the Energy and Commerce Health subcommittee in the U.S. House of Representatives, and will now go to the full Committee next week, according to current online sources. This moves us even closer to full passage of the bill in the U.S. House.
Brian Ross Adams, Chair of the Scleroderma Foundation Advocacy Committee shares, "We have truly raised awareness of scleroderma and we should all be very proud. Whatever happens going forward on the Scleroderma Research and Awareness Act, we have won."
Robert Riggs, Scleroderma Foundation CEO commented, "The effort to get the Scleroderma Research and Awareness Act through committee - and ultimately passed - has truly galvanized the entire Foundation membership. With 103 bi-partisan co-sponsors in the House supporting the Act so far, we're in a very strong position; but this is not the time to take our eye off the ball. We have to keep making our collective voice heard, and Wednesday's Congressional Call-in Day shows just how loudly we can roar. We need to keep up the noise."
The Scleroderma Foundation will continue to keep you updated on this important initiative. |
| Targeted Therapy for Systemic Sclerosis: How Close are We? | |
Despite recent etiopathogenetic advances, systemic sclerosis continues to be one of the most complex systemic autoimmune disease in terms of its therapeutic management.
To read more from this important abstract published in M edscape Medical New - click here.
Manuel Ramos-Casals; Vicent Fonollosa-Pla; Pilar Brito-Zerón; Antoni Sisó-Almirall Posted: 09/14/2010; Nat Rev Rheumatology. 2010;6(5):269-278. © 2010 Nature Publishing Group |
| UTHealth scientists zeroing in on genes tied to two immune disorders | |
HOUSTON - (Sept. 7, 2010) - A new study designed to test suspected links between genes and two immune disorders could open the door to better ways to diagnose and treat the conditions that affect a combined total of approximately 2.5 million people in the United States, report scientists at The University of Texas Health Science Center at Houston (UTHealth).
 TARGETED RESEQUENCING OF IMMUNE-ASSOCIATED GENES - UTHealth researcher and past Scleroderma Foundation Research Grant Recipient, Xiaodong Zhou, M.D., will perform a study of the human leukocyte antigen (HLA) genomics of ankylosing spondylitis and scleroderma.
|
| Screening and therapy for malnutrition and related gastro-intestinal disorders in systemic sclerosis |
Recently, the Canadian Scleroderma Research Group convened a meeting of experts in the areas of nutrition, speech pathology, oral health in SSc, SSc and gastroenterology to discuss the nutrition-GI paradigm in SSc. This meeting generated a set of recommendations based on expert opinion.
Posted Sep 02 2010 12:00am |
|
|
|
|
|
2010 National
Gold Sponsor | |
|
|
2010 Platinum Conference Sponsor | |
|
|
|
2010 Bronze Conference Sponsors | |
|
|
| Donate Now! |
 |
|
|
