Lupus Foundation of America Advocacy Generates Over $2 Million for Childhood Lupus Research Initiative
CDC Grant Will Support Registry to Understand Characteristics of Childhood Lupus and Other Disorders
The U.S. Centers for Disease Control and Prevention (CDC) has awarded a three-year $2.4 million grant to the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a partner of the Lupus Foundation of America’s (LFA) childhood lupus research program. The grant will support CARRA’s natural history studies to determine the lifetime impact of lupus on children and teens who are living with the disease.
“We are thrilled to receive this funding from the CDC that will further our mission of advancing meaningful research in pediatric rheumatic diseases,” said Aimee Hersh, MD, a pediatric rheumatologist at the University of Utah, one of the study’s principal investigators and Chair of the CARRA Lupus Committee. “More specifically, this grant will be used to support the CARRA Registry, which collects disease and patient-reported information on thousands of children, adolescents and young adults with pediatric-onset rheumatic diseases, including lupus. Our goal is to recruit more than 1,000 pediatric lupus patients who will be followed in the CARRA Registry for at least 10 years.”
The LFA and lupus advocates nationwide played key roles in securing the funding that made the grant possible as we worked with Congress to increase funding for the lupus registry program at CDC, which is the source of the grant. The Foundation also worked with Congress and CDC to recommend that the program increase its focus on childhood lupus.
“The funds to support this CDC grant to CARRA are a direct result of the tireless efforts of lupus warriors who participate in year-round Lupus Foundation of America advocacy initiatives,” said Stevan W. Gibson, Lupus Foundation of America president and CEO. “Within the past five years alone, Foundation-led advocacy efforts have generated a half-billion dollars for lupus research. We want to thank Senator Richard Shelby (AL) and Senator Richard Durbin (IL) for their support in the U.S. Senate for this important achievement. We also want to thank last year’s co-chairs of the Congressional Lupus Caucus, Representatives Tom Rooney (FL, since retired), Ileana Ros-Lehtinen (FL, since retired), Bill Keating (MA), and Eddie Bernice Johnson (TX), who were instrumental in generating support among their colleagues for this important childhood lupus research initiative.”
Thousands of children and teens in the U.S. are living with lupus. In children, lupus tends to be more aggressive and severe than it is in adults. The symptoms are more intense, and the disease can have long-term effects on a child’s growth, quality of life, and even how long they live.
The LFA recognized these challenges and in 2006 established the first and only national childhood lupus research program, the Michael Jon Barlin Pediatric Lupus Research Program. In 2017, the Foundation started a partnership with CARRA to bring together advocacy for and research on childhood lupus.
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