Providing Answers, Support and Hope in Kansas, Missouri, and Central & Southern Illinois
Throughout our 40+ year history, the Lupus Foundation of America has made pioneering contributions toward ending the brutal impact of this misunderstood and unpredictable disease.
We are:
- The first U.S. nonprofit organization to fund research on adult stem cells as a potential new treatment for lupus.
- The only organization with a dedicated program to fund research on childhood lupus.
- The first lupus organization to fund research into cardiovascular disease in lupus.
- The only nonprofit health organization with a dedicated focus on unlocking the mysteries of lupus and its impact on the brain and kidneys.
New roadmap for removing barriers to drug development
We commissioned the seminal independent national report by one of the nation’s most respected health policy organizations entitled, “Overcoming the Barriers to Drug Development in Lupus.” The report serves as a roadmap for industry, the Foundation’s national research program, and the federal government toward removing obstacles to the development of new lupus treatments.
Improving clinical trial design with industry to drive new therapies
We marshaled the resources of ten biopharmaceutical companies to unlock clues hidden in data from early trials of potential lupus treatments. This data will improve future trials and stimulate development of new treatments. Some of the field’s most influential thought leaders have called this accomplishment a "major breakthrough."
Global standardized lupus disease instrument training
We created a worldwide portal now used by 3,000 clinical investigators in 50+ countries for training on clinical instruments to uniformly assess the effectiveness of potential new lupus therapies in global pharmaceutical trials. This standardization greatly increases the probability of obtaining positive trial results.
Over the past four decades, we have supported more than 400 lupus research studies conducted at 100+ medical institutions. Investigators we funded have contributed to many of the major advances in lupus research over the past forty years.
These studies have:
- Supported development of the first diagnostic test for lupus.
- Led to the first U.S. based clinical trial of mesenchymal stem cells (MSC) as a potential new treatment for lupus.
- Identified specific risk factors for cardiovascular disease in African American women with lupus.
- Created urgently needed treatment plans for children with lupus, especially those with kidney disease.
- Stimulated the first study on cognitive issues in diverse populations with lupus, raising awareness of cognitive dysfunction and its relationship to employment and disability.
- Discovered biomarkers to identify people at higher risk for lupus kidney disease.
- Secured more than $550 million in federal funding within the past five years for lupus research and education.
- Stimulated formation of the Federal Working Group on Lupus to coordinate the efforts of all federal agencies with an interest in lupus.
- Opened the Department of Defense (DoD) Congressionally Directed Medical Research Program to support studies on lupus.
- Secured a dedicated $5 million annual commitment from the DoD to fund lupus research that hold promise for potential medical breakthroughs.
- Helped establish the first Congressional Lupus Caucus in the U.S. House of Representatives to educate Congress about the needs of people affected by lupus, their caregivers and lupus researchers.
- Secured funding to produce the first nationwide Ad Council campaign to promote awareness of lupus.
We are dedicated to unlocking the mysteries of lupus to improve the lives of people with this devastating disease. We are accomplishing this objective by improving:
It can take years for a person with lupus to get an accurate diagnosis. Reducing time to diagnosis helps them get the right treatment sooner and avoid serious outcomes such as organ damage. Research we funded led to the development of the first test that provides a faster and more accurate diagnosis of lupus.
The need for better care is especially critical in certain groups, like children and pregnant women. In response, we funded research that looks at their unique needs to develop ways to spot severe symptoms sooner and to devise enhanced care plans.
People with lupus need an arsenal of effective and targeted treatments that have fewer side effects. One promising new treatment being tested uses a form of adult stem cells called mesenchymal stem cells. We were the first lupus organization to fund this type of research in 2007, and we continue to fund studies in this area.
RAY: Research Accelerated by You is a lupus data platform where people with lupus and caregivers share information about their lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes. You can be a ray of hope to ensure a bright future for lupus research by sharing your lupus experience.