The Lupus Alliance of America LI/Q Affiliate,
a member of the Lupus Research Institute National Coalition recently sent Long Island patient advocates, Silvia Heredia, Violet Regan, J.C. VanderPutten-Bonner, and Carole-Anne Bonner, a 16 year-old North Babylon High School Junior who has had lupus since she was 12, to Washington, DC to participate in the first ever congressional briefing on Lupus research, advocacy events and visits with local representatives last week to promote awareness of the need for more research on lupus, a chronic autoimmune disease which affects over 1.5 million Americans.
At a congressional briefing held on September 22, members of the U.S. House of Representatives and Congressional staff were updated about the magnitude and impact of lupus, sponsored by Congressman Sherwood Boehlert (R-NY) and presented by the Lupus Research Institute National Coalition. The briefing uncovered some of the dismal facts; lupus has no known cure; no new treatments have been approved for lupus in 40 years; Ninety percent of the people with lupus are women, who are usually diagnosed between the ages of 15 and 44; and existing treatments are often as toxic and dangerous as the disease itself.
Dr. Stuart Kassan, LRI board member and clinical professor of medicine at the University of Colorado Health Sciences Center explained at the briefing that Lupus is the most fundamental example of the immune system gone awry, creating auto-antibodies that attack the body’s own normal tissues and vital organs including the kidneys, heart, lungs, blood, skin and joints.
Last year the Lupus Research Institute National Coalition proposed an initiative to develop a five-year research plan on lupus across multiple institutes of the National Institutes of Health. The four Long Island Advocates from the Lupus Alliance met with several Long Island/Queens representatives on the Hill, to ask them to support the passing of this research plan in the Fiscal year 2007 Labor Health and Human Services Appropriations Bill.
Among the many representatives and Legislative Aides that the Long Island group met, was Congressmen Timothy Bishop (D-NY) from Suffolk County. Congressmen Bishop pledged support for the Bill as well as to helping the Lupus Alliance LI/Q with their mission to support the people with lupus and their families in the Long Island area. Legislative aides to Congresswoman Carolyn McCarthy, (who heard the lupus advocates were in town and tried extremely hard to see them), Congressman Gary Ackerman, Congressman Ed Towns, and Congressman Steve Israel were all interested and supportive, and promised to express the importance of the Bill to the representatives.
The Lupus Alliance of America LI/Q Affiliate is celebrating its 50th Anniversary this year. Since 1955, the Alliance has been helping those with lupus and their families with quality of life programs, including support groups, kids programs, financial assistance, education and awareness and more. You can contact them at 1-800-850-9000.
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