The Lupus Foundation of America Unlocks the Mystery of Lupus
This article is the third in a series highlighting the accomplishments of Research!America’s 2017 Advocacy Award honorees who will be saluted at a dinner in Washington, D.C. on March 15. More details can be found here.
“It started off fairly minor with just the classic butterfly rash,” Maurissa Tancharone Whedon explained in a public service announcement for the Lupus Foundation of America. “Over the years as I neared my twenties [lupus] started to attack more major organs. I’ve had a lung flare, central nervous system flare, two kidney flares.” The central nervous flare was the most debilitating for Whedon, who could not see, talk or walk for six months.
Whedon is one of an estimated 1.5 million Americans living with lupus. More than 16,000 people are diagnosed with lupus annually in the United States. Minorities are disproportionally affected by lupus; African-American women are two to three times more likely to develop lupus than white women, and Hispanic, Asian and Native American populations have an increased risk of developing lupus as well.
The Foundation, which is devoted to solving the cruel mystery of lupus, raises public awareness of this unpredictable disease using social media campaigns like Whedon’s public service announcement. The Foundation also provides valuable funding for lupus researchers and offers education programs at local, state and national levels.
This year, the Foundation is the recipient of the Paul G. Rogers Distinguished Organization Advocacy Award, which honors a public or private organization that is a strong advocate for medical or health research.
A chronic autoimmune disease, lupus cycles between flares and remission, much like Whedon described. There is no simple set of symptoms, which vary from patient-to-patient. Because of this variability, lupus can mimic a number of diseases and is often referred to as “the great imitator”.
Unraveling the mystery of lupus is challenging, especially when it can take on so many forms. The immune system is overactive in lupus patients and can attack multiple organs and organ systems in the body. At the Capitol Conversation on 21st Century Cures hosted by the Foundation in 2015, NIH director Francis Collins, M.D., was optimistic about advances in research, “Immunology is being revolutionized in ways that are really breathtaking. If you want to understand lupus, obviously, immunology is a big part of the answer.”
The Foundation supports the scientific community by providing research grants to scientists across the U.S. and Canada. Investigator Kathleen Sullivan, M.D. Ph.D., at the Children’s Hospital of Philadelphia was awarded a multi-year grant from the Lupus Foundation of America through the Michael Jon Barlin Pediatric Research Program to detect lupus nephritis biomarkers. Her research is helping lay the groundwork for a diagnostic tool that could detect lupus nephritis in children. Sullivan said she owed the Foundation a debt of gratitude for their support of her research program.
Advocacy is a key strategy to achieving the Foundation’s key goals: reducing time to diagnosis, ensuring safe and effective treatments and expanding access to care. Because of the Foundation’s efforts, nearly $75 million in federal funding has been dedicated to lupus research, professional training and education. In addition, they helped obtain congressional support for the Federal Working Group on Lupus at the National Institutes of Health and were instrumental in getting $44 million for the National Lupus Patient Registry Program at the Centers for Disease Control and Prevention (CDC).
The Foundation is hosting the National Policy Summit Advocacy in Action on June 26-27, 2017. For more information, click here.
Anna Hatch is a Research!America Communications intern.