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:2/16/2017)... ... February 17, 2017 , ... Harsha Chigurupati knows the meaning ... development and clinical trials, the founder of Chigurupati Technologies has invented India’s first ... approved ingredients that when infused into alcohol, protect the consumer’s liver and DNA, ...
(Date:2/16/2017)... , ... February 17, 2017 , ... Teaching nursing care ... program, now in development. ACE.P (pediatrics) is being created with the support of the ... of Vulnerable Populations , ACE.P will address what has been identified as a critical ...
(Date:2/16/2017)... Kisco, New York (PRWEB) , ... February 16, ... ... Hospital’s (NWH) nursing professionalism, teamwork and superiority in patient care, NWH has ... of the Commission on Magnet on Tuesday, January 31, 2017. The American Nurses ...
(Date:2/16/2017)... ... February 16, 2017 , ... ... doegedevelopment.com/contact/ , doegedevelopment.com , David A Doege is excited to announce ... commercial tenant improvements, ground up new builds, design build, and site improvements. , ...
(Date:2/16/2017)... ... February 16, 2017 , ... A February 6 article ... freezing or CoolSculpting, noting that some 425,000 procedures were performed with the new technology ... clinic is, in fact, seeing a great deal of interest from area patients who ...
Breaking Medicine News(10 mins):
(Date:2/16/2017)... -- Express Scripts (NASDAQ: ESRX ) was recognized today by ... the Health Care: Pharmacy and Other Services category. "Express ... Admired Companies," said Tim Wentworth , CEO and President, Express ... our 26,000 employees to make medicine more affordable and accessible for ... ...
(Date:2/16/2017)... and SCOTTSDALE, Ariz. , Feb. 16, ... Health Information Exchange (HIE), announced today it is partnering with ... HealthInfoNet,s HIE contains 98% of all Maine ... Maine hospitals and over 500 ambulatory care ... Directors, HealthInfoNet plans to deploy Orion Health,s Amadeus , ...
(Date:2/16/2017)... and TEL AVIV, Israel ... a global interventional cardiology device company, today announced ... M.D., founder and past Chairman and Chief Executive ... created position of Executive Chairman of Medinol US ... Medinol,s global management in the areas of business ...
Breaking Medicine Technology: