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The Scleroderma Foundation Applauds Introduction of First Bill In Congress Promoting Research and Awareness of Scleroderma
Date:5/15/2009

DANVERS, Mass., May 15 /PRNewswire/ -- The Scleroderma Foundation applauds Rep. Lois Capps (D-CA) and Rep. Vern Ehlers (R-MI) for introducing H.R. 2408, the "Scleroderma Research and Awareness Act" in the House of Representatives today. This bipartisan legislation gives hope to the estimated 300,000 Americans and their families living with this devastating disease.

Scleroderma is a chronic and disabling connective tissue disorder resulting from an overproduction of collagen. The word "scleroderma" means hardening of the skin, which is one of the most visible manifestations of the disease. Scleroderma can affect many areas of the body including the heart, lungs, kidneys and gastrointestinal system. There is no known cause and no cure. The disease disproportionately impacts women and minorities. African Americans are at a higher risk of developing systemic scleroderma, and women account for 80% of all diagnoses. The estimated total economic impact of scleroderma in the United States is $1.5 billion annually. The direct cost of treatment for patients is more than $460 million annually.

The "Scleroderma Research and Awareness Act" would:

  • Direct the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma. The legislation authorizes $25 million in FY10, $30 million in FY11, and $35 million in FY12 for this purpose. Priority areas include:
    • Development and evaluation of new treatments.
    • Research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud's phenomenon and Sjogren's syndrome.
    • Establishment of family and "childhood-onset" patient registries.
    • Support for the training of new investigators

  • Direct the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis. The legislation authorizes $2.5 million in FY10, FY11, and FY12 for the awareness initiative.

Mrs. Leticia Cervantes, mother of 13 year-old Cynthia Cervantes, a young scleroderma patient from Huntington Park, California who met Rep. Capps in Washington last year said, "I am so thankful to Congresswoman Capps for taking up our cause. When Cynthia and I met with her, we knew she would do whatever she could to help my daughter and scleroderma patients across the country. She is our angel."

"The Scleroderma Foundation is proud to be in the forefront of advocating for greater research for this devastating disease," commented Joseph P. Camerino, Ph.D., Chair of the Foundation's National Board of Directors. "With the introduction of this landmark legislation, the scleroderma community has renewed hope that a cure will be found."

The Foundation encourages all patients, family members and friends to contact their representatives in Congress and ask them to co-sponsor this important bill. For more information, please visit http://www.scleroderma.org/advocacy/advohome.shtm.

Headquartered in Danvers, Mass., the Scleroderma Foundation is the nation's largest patient organization dedicated to improving the quality of life for patients with scleroderma.


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SOURCE The Scleroderma Foundation
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