When a child close to them showed a sudden, dramatic, and seemingly inexplicable behavior change, Tara and Dave Dollinger were surprised by how difficult it was to get a diagnosis to explain the abrupt transformation.
After struggling for 10 years to comprehend and treat this sudden-onset psychiatric disorder, the Dollingers’ loved one arrived at Stanford University and met Jennifer Frankovich, MD, MS, who identified the illness as pediatric acute-onset neuropsychiatric syndrome (PANS). A pioneer in PANS research, Frankovich co-founded the Immune Behavioral Health Clinic at Lucile Packard Children’s Hospital Stanford in 2012, the first clinic of its kind in the country. She and her team have gained a better understanding of PANS since then, but much remains unknown.
In response, Tara and Dave Dollinger recently donated $2.4 million to assist the efforts of Frankovich and collaborating scientists, who are searching for answers to better understand the triggers and disease course, and to hopefully develop more effective treatments for this debilitating disease. The couple hopes that this gift will lead to faster diagnosis and treatment for other families.
“Families are looking for answers,” Dave says. “Doctors are quick to put them on medicines, but no one has pulled it all together. Dr. Frankovich is a wonderful human being and a great clinical scientist. She has researchers from multiple disciplines working to understand this illness.”
Children with PANS have sudden onset of obsessive-compulsive behaviors and/or restricted eating, along with many other neuropsychiatric changes (such as anxiety, exaggerated mood changes, behavior regression, movement abnormalities, cognitive and memory difficulties, sensory disturbances, sleep disruption, and bed wetting). These symptoms usually occur after an infection that leads to a neuroimmune response. Because PANS is not widely recognized in the medical community, these symptoms are often attributed to other conditions.
The generous gift will establish the Tara and Dave Dollinger PANS Biomarker Discovery Core, an expanded biorepository of data, blood, and tissue samples from patients at the Stanford PANS clinic. The PANS biorepository will be open to all basic science researchers—even those outside of Stanford—who will use these samples to build a molecular map of PANS. The data they collect will lead to better diagnostic and treatment strategies.
“We are thrilled about the opportunity to expand our clinical database and biorepository,” says Frankovich. “It will enable us to advance patient care and produce research to guide clinicians around the world as they care for patients with PANS and related disorders. Thank you to Tara and Dave for this significant investment in our work.”
The Dollingers are optimistic that discoveries made through this biorepository will also bring PANS to national attention—especially among health care and insurance providers.
“Just by recognizing PANS as a disease and having a basic understanding of the symptoms and causes,” Tara says, “we can at least let children and their families know they’re being supported while they wait for a cure. Other people are rooting for them!”
The Dollingers live in Atherton. Their foundation, the Tara and Dave Dollinger Foundation, advocates for wildlife and for equal access to education and health care worldwide.
Thank you, Tara and Dave, for supporting research essential to comprehending this illness and providing hope to families who are waiting for answers!