Advocates Band Together for Lupus and Double the Number of Contacts Made on Capitol HillMarch 19, 2010
On March 16, the need to bridge the gaps in lupus research and understanding was communicated by lupus advocates through close to 2,000 emails and personal visits to Members of Congress and their staff during the Lupus Foundation of America’s (LFA) Twelfth Annual Advocacy Day.
Kathryn Witmer and her son Christopher (left) and Susan Trainor (right) meet with Rep. Glenn Thompson Jr. (PA) at the 2010 LFA Advocacy Day.
Advocates shared their personal stories of how existing gaps in research and understanding have personally affected them, including waiting years for an accurate diagnosis, and suffering devastating side effects from current therapies available to treat lupus. Their stories demonstrated the need for more funding for lupus research, awareness, and health care provider education.
Advocates in Washington, D.C. first participated in a half day-long training program that began with a special public service announcement (PSA) from Julian Lennon and partnering musician James Scott Cook. The musicians have banded together to support lupus research by donating a portion of the proceeds from their new song "Lucy" to the Lupus Foundation of America and the St. Thomas’ Lupus Trust in the U.K.
The training helped advocates formulate their case for support to legislators about the need for increased lupus research, awareness, and health care provider education. Dr. Susan Manzi, a member of the LFA’s Medical-Scientific Advisory Council and an Associate Professor of Medicine at the University of Pittsburgh, served as the moderator for the training, which included representatives from the LFA; Dr. Gary Gilkeson, Vice Chair, Department of Medicine for Research, Medical University of South Carolina, and chair of LFA’s Medical-Scientific Advisory Council; and lupus advocate Wendy Rodgers. Advocates also had time to get to know each other, and offer support. Advocates who participated previously in Advocacy Day helped first-time advocates "learn the ropes" of Capitol Hill and provided encouragement.
Advocates wore purple scarves and ties, as well as "Band Together for Lupus" stickers to reinforce the message of the day. It was a beautiful spring day in Washington, D.C., which reflected the mood of hope and determination among the advocates. Advocates asked Members of Congress and their staff to band together with them in supporting increased funding for lupus research, awareness, and health provider education programs. Many legislators who have already supported lupus pledged their continued support, and other Members and staff listened with concern as advocates shared their stories and indicated their desire to learn more about lupus and ways they could support the efforts to find a cure for lupus and help those affected by the disease.
Congressmen Tom Rooney (R-FL, 16th) and James Moran (D-VA, 8th), received the LFA Distinguished Leadership Award during the Advocacy Day Luncheon in recognition of their support for people with lupus. Both Congressman Rooney and Congressman Moran were generous with their time and greeted advocates for the duration of the luncheon.
Many who could not join the lupus advocates on Capitol Hill also made their voices heard. It’s not too late to take action. Spread the word among friends and family. To send an email to your Members of Congress, visit www.capwiz.com/lfa.
The LFA wishes to thank everyone who took part in making this year’s Advocacy Day a huge success, whether you came to Capitol Hill or sent an email to your Members of Congress. Together, we can keep the momentum going. It’s because of lupus advocates like you that LFA has been able to begin to raise lupus on the nation’s health agenda, and secure new sources of federal funding for lupus, and will continue to do so. With ongoing support of lupus advocates across the nation, we can change the future for people with lupus and find new, safer, and more tolerable, treatments, increase public and health provider awareness, and close the gaps in research and understanding of the disease.
Overheard at the LFA's Twelfth Annual Advocacy Day
- "There is hope for all of us. We can band together. We can raise awareness and do something." -- Jeanette Soto, Jacksonville, FL
- "I feel camaraderie; I feel somebody understands. There are people here who have the same symptoms that I have, and understand the disease." -- Tiffani Stokley, Canton, MI