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The Scleroderma Foundation Applauds Introduction of First Bill in the Senate Promoting Research and Awareness of Scleroderma
Date:8/4/2009

DANVERS, Mass., Aug. 4 /PRNewswire-USNewswire/ -- The Scleroderma Foundation applauds Senator Kirsten Gillibrand (D-NY) for introducing S. 1545, the "Scleroderma Research and Awareness Act" in the United States Senate. This important legislation, co-sponsored by Senator Charles Schumer (D-NY), 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.

"The Scleroderma Foundation is proud to be at 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. We are extremely grateful to Senator Gillibrand and Senator Schumer for their leadership on our behalf. We are also grateful for the efforts of many volunteers who comprise the Foundation's Advocacy Committee who have dedicated a great deal of time and energy to champion these efforts."

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; the Foundation is also the largest nonprofit provider of funds supporting peer-reviewed scleroderma research in the United States.

    Media Contacts:

    Robert Riggs,
    Chief Development Officer
    Scleroderma Foundation
    800-722-4673, ext. 11
    rriggs@scleroderma.org

    or

    Brian Ross Adams
    Executive Director
    Scleroderma Foundation, Southern California Chapter
    310-477-8225
    badams@sclerodermasocal.org


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SOURCE Scleroderma Foundation
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