The Lupus Alliance of America LI/Q Affiliate joined forces recently with other lupus agencies around the Nation to lobby congress to take action on issues important to those with lupus. Over two days, the lupus advocates attended meetings on the new clinical trials taking place for lupus that featured several top pharmaceutical companies that have thrown their hat into the lupus ring. The Alliance advocates also lobbied the house and the senate for more dollars for lupus research, clinical trials and a definitive plan on how lupus should be studied, what is needed to move forward in research, and how the research should be done. Among the many members of Congress the Alliance met with were local Representatives Peter King, Carolyn McCarthy and Steve Israel all of whom have been staunch supporters for the fight against lupus.

“Our lobbying paid off,” Violet Regan a Board Member of the Alliance gladly stated, “On May 23rd, the National Institutes of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) posted a letter on their website asking for the public’s input on “The Future Directions of Lupus Research,” a planning document aimed at advancing understanding of lupus to help diagnose, treat, and, ultimately, prevent the disease. This is a direct result of our lobbying and we are proud to have helped make this happen,” she added. The document will be posted online at, www.niams.nih.gov or you can click the link provided below.

Many of the most prominent doctors working with lupus today feel that the next ten years will finally show significant changes in lupus diagnostic tools, medications, and even more importantly, a cure. “The Future Directions of Lupus” document is a large first step in achieving that goal. The Lupus Alliance of LI/Q is proud to have assisted in bringing this important document to light, and will continue to fight at the forefront of the battle against lupus. If you have lupus or know someone who does please visit the websites above and leave your comments about the NIAMS Future of Lupus document. If you have questions or need help please call the Alliance at 1-800-850-9000. The time to speak up for lupus is now, let your voice be heard and be a part of the cure!

http://www.niams.nih.gov/an/stratplan/comment_note_lupusplan.htm