Member Spotlight: Lupus Foundation of America
July 15, 2019
By Kelly Garrity, Senior Director, Membership Services and Development
The Lupus Foundation of America works to improve the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. They are devoted to putting an end to lupus, a chronic and potentially fatal autoimmune disease while giving caring support to those who suffer from its brutal impact.
The Foundation is dedicated to achieving three disease-specific outcomes: reducing diagnosis time, ensuring people with lupus have an arsenal of safe and effective treatments, and expanding direct services and access to treatment. Expanding medical research on lupus is critically important to achieving these outcomes.
The Lupus Foundation of America’s research efforts expand beyond just funding research grants. This method alone has not proven successful. The Foundation’s approach is innovative. It addresses the root problems that have interfered with progress and has set a course to solve them. Their research focus is centered in three critical areas: identify the causes of lupus, discover better ways to control symptoms and, ultimately, find pathways to cure lupus.
Not only do they directly support research initiatives to deliver the most significant impact on peoples’ lives in the shortest time possible, the Foundation also leads sustained advocacy efforts. They recognize the federal government as one of its most valuable partners in the fight against lupus, and work tirelessly to leverage the government’s resources and push them to be more responsive to the needs of the lupus community. This includes working with Congress, the administration, and state and local governments to ensure the voice of those living with lupus is included in all of their legislative and regulatory decisions. In the past five years alone, the Foundation’s advocacy has generated more than $550 million in federal funding for lupus research and education initiatives throughout the U.S.
In addition to supporting research, the Lupus Foundation of America provides programs and services to help people living with lupus now. The Foundation delivers education programs and vital support services through a national network of local chapters, regional offices, a highly trained health-educator team, and an online National Resource Center on Lupus to guide people through the complexities of living and coping with lupus.
Just as solving the cruel mystery of lupus requires a united effort by all stakeholders, protecting the interests of the millions of Americas with chronic diseases or disabilities, and their family caregivers, needs a reliable and credible voice on the national level to lead the charge before Congress and the Administration. The National Health Council fulfills this vital role on behalf of nonprofit health organizations such as the Lupus Foundation of America.
The Lupus Foundation of America values collaborative initiatives and partnerships with organizations that share our priority for serving the needs of our respective constituencies. With health policy issues front and center of our national political debate, the Foundation believes that it is essential to support the NHC’s ability to respond to both legislative and regulatory threats as well as opportunities.
Consequently, the Lupus Foundation of America is proud of its affiliation with the National Health Council and values its contributions to ensure all Americans have access to quality, affordable, and effective health care.
For more information on becoming an NHC member, email me.