Going strong at 20: MIND Institute hits a milestone
Twenty years ago a small group of frustrated but determined Sacramento-area parents of children with autism decided it was time to fill a glaring hole in medical research: understanding and treating autism and other neurodevelopmental disorders.
Within a year, these parents had helped secure funding and passage of a bill in the California legislature establishing the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute. With the medical center's $1.5 million contribution - and a commitment to house the center on the health system campus, the MIND Institute was born.
Since that time, the MIND Institute has built a vast and multidisciplinary team of experts and achieved international recognition as a leader in research and innovative approaches to treating a broad range of disorders, including autism spectrum disorder, fragile X syndrome, ADHD, 22q11.2 deletion syndrome and Down syndrome. More than 50 faculty from five UC Davis schools and colleges work to advance the mission of the Institute. These innovative faculty members study everything from cellular processes to community programs, all with the goal of turning research into better lives for people with neurodevelopmental disorders and their families.
When the founding families established their vision, autism awareness and research was in its relative infancy; even the definition of autism spectrum disorder had not been definitively established. Temple Grandin, an amazing woman with autism and a renowned advocate, had only recently published her groundbreaking Thinking in Pictures: My Life with Autism.
Much has changed since then and those changes are reflected in the work taking place every day at the MIND Institute.
In the past 20 years, MIND Institute faculty members have helped identify the biological bases of neurodevelopmental disorders using animal models, discovered biomarkers for autism, including larger brains in some infants, identified genetic and environmental factors that increase risk of autism and other disorders, including the mother's health. They have elucidated the critical role of the immune system in autism, tested pharmaceutical treatments, and developed and helped implement educational and behavioral interventions and innovative technologies to improve outcomes for children with autism and other neurodevelopmental diagnoses. MIND Institute researchers have led research that has advanced treatments for fragile X syndrome, the most common cause of inherited intellectual impairment, and identified related but previously unrecognized disorders including primary ovarian insufficiency and fragile X-associated tremor/ataxia syndrome (FXTAS). MIND Institute scientists also have developed widely used biological and behavioral assays used to characterize and track the course of various disorders and their responsiveness to new therapeutics.
The MIND Institute's clinical enterprise, which began with a handful of providers, has since grown to include genomic medicine physicians, psychiatrists, developmental behavioral pediatricians, clinical psychologists, genetic counselors, social workers, and behavioral analysts. The Institute's clinics had 6,100 patient visits in 2017 for diagnosis, treatment, testing and parent education.
And all of this work has been done in a carefully designed environment that relies on collaboration among experts from numerous disciplines, both at UC Davis and at other universities from around the world. And because it was founded by parents, families continue to play an essential role in setting the MIND Institute's research priorities, and helping scientists carry out that work through participation in research projects and clinical trials, among other activities. Today the MIND Institute serves as a hub of activity for families, educators, researchers and the community to learn, share and collaborate. Together they are working to better understand and find the answers those founding families ̶ and every other parent with a child facing a neurodevelopmental diagnosis - are seeking.