When your organization is built around helping people cope with a disease few understand, getting public attention is critical. It’s the first step toward promoting research for new treatments, building public awareness of the disease and its impact, and securing support for fundraising.
The Lupus Foundation of America Inc., (LFA) has been aggressively marketing its cause. The organization pushes for media coverage and sponsors events to raise awareness, both aimed at generating public interest and securing corporate sponsorship.
Lupus is a chronic autoimmune disease that strikes mainly young women, especially women of color, causing a variety of symptoms from mild to severe. These include inflammation of various parts of the body, especially the skin, joints, blood, kidneys, heart and brain. But so little attention has been paid to the disease that no new drugs have been developed during the past 40 years, says Sandra C. Raymond, Lupus Foundation president and CEO.
Raymond says the organization is in the midst of an all-out battle to get its messages heard – and there are some signs that it’s getting through. A number of national publications have written stories on the illness.
Recently, the LFA hosted a public policy summit in Washington, D.C., that brought together health care workers, representatives from federal agencies, medical experts and congressional staffers to discuss the state of lupus research and care, and search for legislative measures that could help.
Supporting this entire effort is the LFA’s custom publication, Lupus Now®, that provides insight into the reality of living with the illness, as well as the latest medical research and treatment options.
The 48-page consumer-focused magazine is designed to connect the non-profit with its members and help it reach out to other influential parties, such as corporate sponsors and the media. “This magazine says loud and clear that lupus is a significant public health issue that deserves attention,” says Raymond. “The magazine is part of the total tapestry of our comprehensive national program.”
In fact, a number of nonprofit health advocacy organizations are finding that publishing a custom magazine helps them raise awareness and promote advocacy, says Jane Ottenberg, president of The Magazine Group, which produces Lupus Now.
