Navigation Links
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.


'/>"/>
SOURCE The Scleroderma Foundation
Copyright©2009 PR Newswire.
All rights reserved

Related medicine news :

1. New Source of Information on Scleroderma Medications
2. Tissue-Growth Gene Tied to Scleroderma
3. The Larry King Cardiac Foundation Achieves Record Life-Saving Pace With Help From New Friends and Partners
4. Dr. Emily Abrams Massey of Atlanta Honored as Healthy Hero by the AMERIGROUP Foundation
5. Bonnie Hunt, Melina Kanakaredes and Dr. Ruth Westheimer Lend Their Support to Childrens Brain Tumor Foundation Benefit
6. Fisher Center for Alzheimers Research Foundation Names Kent Karosen to Serve as President and CEO
7. ADA Foundation Hosts Second Give Kids A Smile Awards Gala
8. Cystic Fibrosis Foundation Rings Bell to Close New York Stock Exchange
9. Take a Walk in the Great Park to Benefit the Arthritis Foundation
10. AMA Foundation Names Minority Scholars Award Recipients
11. Mary Wilson Brings the Crowd to Their Feet at the Sixth Annual Lupus Foundation of America Awards Gala
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/26/2016)... ... 2016 , ... Quality metrics are proliferating in cancer care, and are derived ... eye of the beholder, according to experts who offered insights and commentary in the ... Care. For the full issue, click here . , For the American Society ...
(Date:6/26/2016)... (PRWEB) , ... June 26, 2016 , ... ... fertility once they have been diagnosed with endometriosis. These women need a treatment ... also require a comprehensive approach that can help for preservation of fertility and ...
(Date:6/25/2016)... ... June 25, 2016 , ... First Choice Emergency ... named Dr. Sesan Ogunleye, as the Medical Director of its new Mesquite-Samuell Farm facility. ... Director of our new Mesquite location,” said Dr. James M. Muzzarelli, Executive Medical Director ...
(Date:6/24/2016)... ... June 24, 2016 , ... A recent article ... are unfamiliar with. The article goes on to state that individuals are now more ... these less common operations such as calf and cheek reduction. The Los Angeles area ...
(Date:6/24/2016)... ... ... Global law firm Greenberg Traurig, P.A. announced that 20 Florida attorneys are recognized ... this recognition are considered among the top 2 percent of lawyers practicing within the ... this year’s Legal Elite Hall of Fame: Miami Shareholders Mark D. Bloom, Burt ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... , June 24, 2016 Research ... World Market for Companion Diagnostic Tests" report to their ... Market for Companion Diagnostics The World Market ... and personalized medicine diagnostics. Market analysis in the report includes ... Test Market (In Vitro Diagnostic Kits) by Region (N. America, ...
(Date:6/23/2016)... , June 23, 2016  MedSource announced today ... its e-clinical software solution of choice.  This latest ... possible value to their clients by offering a ... preferred relationship establishes nowEDC as the EDC platform ... MedSource,s full-service clients.  "nowEDC has long been a ...
(Date:6/23/2016)... June 23, 2016 Roche (SIX: RO, ROG; ... for its Elecsys BRAHMS PCT (procalcitonin) assay as a ... septic shock. With this clearance, Roche is the first ... integrated solution for sepsis risk assessment and management. ... infection and PCT levels in blood can aid clinicians ...
Breaking Medicine Technology: