LRI Coalition Members - Including the SLE Lupus Foundation- Achieve Unprecedented Advocacy Success

May 2012 LRI Coalition Members - Including the S.L.E. Lupus Foundation - Achieve Unprecedented Advocacy Success Dear Friend: The S.L.E. Lupus Foundation along with five New York members of the Lupus Research Institute (LRI) Coalition comprising the Lupus Agencies of New York State (LANYS) achieved unparalleled impact on legislation and attention paid to lupus when they gathered in Albany for the 4th Annual Lupus Awareness Day sponsored by Assemblywoman Vanessa L. Gibson and Senator Joseph Griffo. Lupus Awareness Day educates New York State’s elected policymakers, state agency officials, health care professionals, and the general public about lupus and the need for greater program support including research to develop better diagnostic tests and safer, more effective treatments, and ultimately, to discover the cure to eradicate this devastating disease.  Key legislation impacted: Taxpayer check-off to establish voluntary donations for lupus education/prevention/outreach Establishment of Advisory Council to government comprised of representatives of people with lupus, their families and health care providers specializing in lupus Regulation of Step Therapy protocol putting treatment decisions back in the hands of health care professionals rather than insurance companies          IMAGE 1: Assemblywoman Ellen Jaffee, Assemblywoman Annette Robinson, Honi Kurzeja, LAA, UNY, Yasmin Santiago SLE, Assemblywoman Vanessa Gibson, Kathleen Arntsen LFMNNY, Julie Mersereau G Valley, Diane Gross SLE Lupus Foundation, Senator Betty Little Back 2 rows LFMNNY Board Members (except Joann Quinn LI/Queens and Jackie Barry from G Valley) IMAGE 2: Kara Moran, LAA, NYST Affiliate; Honi Kurzeja, LAA, UNY Affiliate; Julie Mersereau, LFGVNY; Senator Joseph Griffo; Kathleen Arntsen, LFMNNY; Assemblywoman Vanessa Gibson; Senator Catharine Young; Assemblywoman Ellen Jaffee; JoAnn Quinn, LAA, LI/Queens Affiliate; David Arntsen, LFMNNY; Diane Gross, SLE Lupus Foundation; Assemblyman Matthew Titone IMAGE 3: Front Row-Senator Diane Savino; Assemblyman Matthew Titone; Assemblywoman Vanessa Gibson Back Row-Pauline Ziatts, LAA, NYST; JoAnn Quinn, LI/Queens; Yasmin Santiago, SLE; Dale Bullock, LFMNNY; Honi Kurzeja, UNY; David & Kathleen Arntsen, LFMNNY; Kathy & Phil Teague, LFMNNY; Julie Mersereau, GV; Gerard Conway, Esq. Medical Society of the State of NY Click here to read a summary of details on the events of Lupus Awareness Day. For greater depth on these critical issues, visit the website of Lupus Foundation of Mid and Northern New York, Inc. led by LANYS spokesperson Kathleen Arntsen. Warmly, Margaret Dowd Executive Director, S.L.E. Lupus Foundation/President, Lupus Research Institute The S.L.E. Lupus Foundation is the preeminent lupus organization providing direct patient services, education, public awareness, and funding innovative research in partnership with the Lupus Research Institute. www.LupusNY.org www.LupusResearchInstitute.org