Shafali Spurling Jeste, MD, a child neurologist and Chair of the Department of Pediatrics at UCLA, is driven by a belief that behavioral intervention can be life-changing for children with tuberous sclerosis complex (TSC). Dr. Jeste’s research focuses on identifying early brain-based and behavioral markers that might predict autism or other neurodevelopmental disorders. “We’ve been studying babies with TSC for many years, and found that by age one, we could identify differences in both brain and behavior in those who went on to have autism.” The discovery led to JETS (JASPER Early Intervention for TSC), the first behavioral intervention clinical trial for toddlers with TSC. The results showed that “both groups overall made gains in their social communication skills, whether or not they got the treatment right away or were in the waitlist comparison group.” These results suggest that developmental surveillance – following these children early in development – is really important. And it’s something that is not being done consistently in clinics.”
The overarching mission of Dr. Jeste’s lab is to improve precision health and clinical trial readiness in neurodevelopmental disorders. “There are two types of precision health. One is precision in timing of when we diagnose and treat. That’s where early detection and intervention comes in. The second is precision in the target of treatment. We diagnose conditions in which we identify the genetic cause, and we need to find the right biomarkers and outcome measures that can be used in clinical trials to test targeted, disease modifying treatments.”
In the JETS, the parent of a child with TSC is trained in JASPER, an intervention that is parent mediated and bolsters nonverbal communication skills. It was developed by Dr. Connie Kasari at UCLA. JASPER has been shown to improve social functioning and language in children with autism, but it had never been tested in TSC before this trial. Dr. Jeste states that there also are therapies that are being tested that can really improve the challenging behaviors, such as aggression or self-injury. For Dr. Jeste, these interventions represent an additional tool in the treatment toolbox. “You’re not relying solely on medications – you’re using strategies to help improve behavior.”
A member of the TSC Alliance Board of Directors, Dr. Jeste served on the panel that decided which TSC research grants for would be funded by the Defense Department’s Tuberous Sclerosis Complex Research Program (TSCRP). “The TSC Alliance has funded many initiatives that have been transformative, and the alliance was instrumental in securing DoD funding for TSC. They are truly are the drivers of all TSC research.”
Dr. Jeste is known for her innovative approach to treating TSC, and for her care and compassion for those with the disease. More than anything, she wants to find a new way to treat neurodevelopmental disorders. “My greatest hope in the near term is that we not only continue, but expand the funding for research. The impact would be a future in which there are treatments that we can offer families at every stage of development that will improve outcomes in children and adults with TSC.”
Help the TSC Alliance accelerate TSC research by donating to the 50 Forward Fund!