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Our Childhood Lupus Research Program

The Lupus Foundation of America takes a strategic approach to investigating lupus in children by calling on some of the greatest minds in the field to address the most critical issues that have stood in the way of progress, and hold the greatest promise for accelerating our understanding of how lupus affects children and adolescents.

The Michael Jon Barlin Pediatric Lupus Research Program

In 2006, we established the Michael Jon Barlin Pediatric Lupus Research Program with the generous support of the Wallace H. Coulter Foundation. The program is founded in memory of Michael Jon Barlin, who passed away at the age of 24 following a long battle with lupus.  In 2010, the program was expanded to include the Lucy Vodden Research Grant Award established by LFA and a generous gift from Julian Lennon.

To date, the program has funded 15 projects covering a wide range of topics including kidney disease, quality of life, and neuropsychiatric disease.

Here are just a few highlights from researcher’s we have funded:

2014-2018: Detecting Kidney Flares in Children Early On

Kidney disease often goes undetected until it’s too late, and kidney damage in children can result in a lifetime of hospital visits for these young patients. Dr. Kathleen Sullivan of the Children’s Hospital of Philadelphia is researching HER2, a gene that can play a role in the development of breast cancer and investigating whether it can anticipate flares in children with lupus. Results of this research may lead to real-time evaluation of disease activity. Her 5-year project has led to several publications and Dr. Sullivan currently has patents pending.

2013:  An innovative approach for disease management for teens with lupus  

For teens with lupus, mastering disease self-management is a crucial process required to successfully transition to independent, adult care and to prevent worsening of disease severity. Dr. Scalzi, Pediatric Rheumatologist at Penn State Hershey Children’s Hospital and her team developed an 8 week Facebook based program that combined education, disease management and interpersonal support. The program, which published results in 2018 found that it was effective in increasing medication adherence and increasing feelings of empowerment, community and self-efficacy. Read more

2008: Novel methods to detect brain changes in adolescents with lupus

Lupus is a disease that can affect any organ or system, including the brain. Disease effects on the brain in lupus are thought to happen through changes in the brain’s white matter and result in challenges with tasks such as problem solving or organization. When these white-matter brain changes happen in adolescence, the problem is more difficult and important to detect early and treat. Dr. Muscal’s study will be able to better define what changes in white-matter are causing disease. His study was also a first step in establishing how doctors can use brain imaging to detect lupus brain damage early.

Solving the Unique Challenges of Childhood Lupus
Dr. Emily Von Scheven
What's happening in the field of pediatric lupus is that basically, we're getting better at treating children – although, it's quite a challenge still. What we're seeing as they grow up into adulthood is that they're developing a lot of secondary complications.
Dr. Emily Von Scheven
Pediatric Rheumatologist at UCSF
Read her story