Our thanks to the more than 80 individuals who joined us in our travel to the Pennsylvania State Capitol on May 5, 2008. Though we visited with many of our Legislators and their representatives, our job is far from over. Your voice is needed to assure funding continues for patient services throughout the state of Pennsylvania.
Please let your voice be heard. As a voter, your voice does make a difference. Visit your Representative and Senator in
their district office or contact them by letter, phone or email to discuss the importance of funding for Lupus research and programs. Tell them how the disease has affected you, your family, employment and
your health care issues.Take the opportunity to thank members of the Lupus Caucus for their interest and ongoing support for
the Lupus cause.
Information about your State Senator or State Representative is available by visiting the website www.legis.state.pa.us or by calling your local branch office.Legislative Lupus packets are also available. Call today so we can get every
Pennsylvania legislator in the Loop!
Plan to join us in 2009 Travel with us
to Harrisburg to let our State Legislators know the change lupus has had on your life and the need for lupus education and support! Some of the assembly is new, and it will be up to us to describe lupus and make them aware of its impact on the Commonwealth. Once you make your reservation, we will ask you to make meeting appointments with your legislators. Transportation is provided at no charge. As next spring approaches, Advocacy Day 2009 details will be made available online and from your local
Office.
National Advocacy
One of LRI’s primary goals is to sound the siren of need for lupus research among members of Congress, health groups, the pharmaceutical industry, and the public.
LRI advocates for lupus research in numerous ways:
Spearheads National Coalition. In 2004 the Institute increased its breadth and scope by gathering together state and local patient organizations into a National Coalition. This “patient voice for lupus research” has already become a mighty engine for advocacy work. Recent National Coalition-sponsored meetings on Capitol Hill led to a congressional directive to the NIH to develop a 5-year trans-institute research plan for lupus. The National Coalition’s dynamic work continues.
Raises Funds. With current government funding of lupus nearly flat, private sector support for lupus research only rises in importance. Estimated budgets for the NIH report a disappointing 0.9% increase in federal funding for lupus research in 2005 and a 0% increase in 2006. LRI has stepped up to the plate, raising more than $13 million from individuals, foundations, and corporations through its Campaign for a Cure and providing thoughtful donors with guidance on strategies for giving, such as including the LRI in their wills--a gesture that ensures their support for the benefit of generations to come.
Promotes Biomarker Initiatives. The LRI introduced its biomarker research initiative in 2002, prompting the federal government to focus on the biomarker search and contributing to the formation of the Lupus Biomarker Working Group and its committees. The group is a consortium of academic research sites, NIAMS intramural investigators, voluntary agencies, and pharmaceutical developers. Its goal: to validate five promising biomarkers to improve diagnosis, monitoring, and treatment of lupus.
Advocates at the Federal Level. LRI representatives and Coalition members regularly speak out in the name of lupus research and prevalence on Capitol Hill and in other decision-making forums. For example, LRI President Margaret Dowd and others have presented testimony at the FDA on the state of pharmaceutical drug development in lupus. In October 2006, the LRI National Coalition presented a congressional briefing on Racial Disparities in Lupus on Capitol Hill, in cooperation with the office of Rep. Hilda L. Solis (D-CA).
Empowers Patients, Families, and Friends. The time and involvement of caring citizens makes an enormous difference in sounding the call for more lupus research. Some distribute information. Others organize lupus awareness and fundraising events. Many donate. Find out how you can Get Involved.
Broadens Public Awareness. For Americans to understand the pressing need for the kind of work that LRI supports, the public needs to be educated about lupus.
Recent Lupus Research Institute National Coalition programs and initiatives include:
Securing of language in the Fiscal 05 House Subcommittee on Labor, Health and Human Services, Committee on Appropriations Report, that directs the NIH to develop a 5-year trans-institute multidisciplinary research plan for lupus.
A presentation of the first-ever Congressional Briefings dedicated to lupus research (2005) and racial disparities in lupus (2006).
Co-sponsorship, with the Association of Black Cardiologists, of the program “Heart Disease & Lupus: What Women of Color Need to Know” at the Congressional Black Caucus 35th Annual Legislative Conference in September, 2005.
Launch of the “Get into the Loop” national public service TV campaign, in English and Spanish, aimed at alerting young women to the risks, dangers and symptoms of lupus.
Legislative Lupus Caucus Senate of Pennsylvania
Senator Jane C. Orie, Co-chair
Senator Robert J. Mellow, Co-chair
Senator Lisa Boscola Senator Pat Browne
Senator Jay Costa, Jr.
Senator Stewart Greenleaf
Senator Richard A. Kasunic
Senator Gerald J. LaValle
Senator Sean F. Logan
Senator Raphael Musto
Senator Michael A. O’Pake
Senator John C. Rafferty, Jr.
Senator Michael J. Stack, III
Senator Barry J. Stout
Senator Robert C. Wonderling
House of Representatives
Representative Timothy Solobay, Co-chair
Representative Matthew Baker
Representative Robert Belfanti, Jr.
Representative Louise Williams Bishop
Representative Thomas R. Caltagirone
Representative Mark Cohen
Representative Scott Conklin
Representative Paul Costa
Representative Lawrence H. Curry
Representative Camille "Bud" George
Representative Jaret Gibbons
Representative Neal Goodman
Representative Michael K. Hanna, Sr.
Representative R. Ted Harhai
Representative Tim Hennessey
Representative George T. Kenney, Jr.
Representative Deberah Kula
Representative Daylin Leach
Representative Sandra Major
Representative Joseph Markosek
Representative Ronald Marsico
Representative Thomas Murt
Representative Mark Mustio
Representative Scott Perry
Representative Merle H. Phillips
Representative Tina Pickett
Representative Harry A. Readshaw
Representative Carole Rubley
Representative Randy Vulakovich
Representative Jesse White
Representative Rosita C. Youngblood
