The MIND Institute marks 20th anniversary
Sacramento, Calif. – 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.
The result was the creation of the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, now an internationally renowned clinical and research powerhouse on the campus of UC Davis Health. The MIND Institute is marking its 20th anniversary with an open house on April 7 and a series of public lectures throughout the year.
The influential parent group, which included KCRA TV anchor Sarah Gardner and her husband Chuck, Sacramento cardiologist Lou Vismara, and Rick Rollins, former secretary of the California Senate, secured private and state funding and passage of a bill establishing the MIND Institute at UC Davis. The medical center chipped in an additional $1.5 million and a commitment to house the center on the health system campus. Two years later, the state approved $30 million to build the MIND Institute, a modern and family-friendly center with both clinical space and research laboratories.
Since its founding, 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 environmental factors and 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, and 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 investigators 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. In 2017, the Institute’s clinics had 6,100 patient visits 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.
The MIND Institute has two public lecture series, Minds Behind the MIND, featuring presentations by MIND Institute researchers, and the Distinguished Lecture Series, which showcases work in the field of neurodevelopmental disorders by scientists and other leaders around the country. The open house, which is free, on April 7 will feature behind-the-scenes tours of the clinic and research areas, talks by key faculty members and more.
MIND 20th Anniversary Milestones
1998: At the instigation of several Sacramento families, the UC Davis Medical Investigation of Neurodevelopmental Disorders (MIND) Institute is established
1999: California State Legislature allocates funds to build the MIND Institute on the UC Davis Health campus
2000: MIND Institute Evaluation Clinic (now the Massie Family Clinic) opens in the Ellison Ambulatory Care Building at UCDMC
2001: Ground is broken on two buildings that will comprise the MIND Institute on 50th Street in Sacramento
2001: MIND Institute partners with Cure Autism Now and the National Alliance for Autism Research to launch the first annual International Meeting for Autism Research (IMFAR)
2001: Center for Children’s Environmental Health is established with a grant from the National Institute of Environmental Health Sciences and the Environmental Protection Agency under the leadership of Isaac Pessah
2002: Sally Rogers initiates the NICHD Collaborative Program of Excellence in Autism
2003: 110,000-square-foot MIND Institute complex opens
2003: Distinguished Lecturer Series launches bringing world leaders in neurodevelopmental research to the UC Davis campus
2003: CHARGE (Childhood Autism Risks from Genetics and the Environment) study begins, led by Irva Hertz-Picciotto
2004: Autism Phenome Project, a multidisciplinary, longitudinal exploration of different types of autism, launches under the leadership of David Amaral
2004: Randi and Paul Hagerman discover FXTAS (fragile X-associated tremor/ataxia syndrome)
2004: Autism Research Training Program for postdoctoral fellows launches with funding from NIMH and led by Sally Rogers and David Amaral
2006: MIND Institute launches MARBLES study to investigate the role of genetics and environmental exposures in autism, led by Irva Hertz-Picciotto
2006: UC Davis designates a University Center for Excellence in Developmental Disabilities by the U.S. Health and Human Services Administration led by Robin Hansen
2007: Minds behind the MIND program launches with public lecture series
2007: MIND study shows babies who do not respond to their names may be at risk for developmental delay, autism
2008: Early Steps, an ACE Network Treatment Study, launches under the leadership of Sally Rogers
2008: MIND research shows that some cases of autism may be traced to immune systems of mothers during pregnancy
2009: MIND study shows that California’s dramatic autism increase not solely due to better diagnosis or diagnostic substitution
2009: UC Davis researchers develop newborn test for fragile X syndrome
2010: MIND study confirms link between maternal age and autism
2011: MIND study finds women who start prenatal vitamins before pregnancy are less likely to have a child with autism
2011: Boys with regressive autism, but not early-onset autism, have larger brains, MIND Institute research shows
2012: TIME magazine names research by Sally Rogers, who created ESDM autism intervention, a top-10 medical breakthrough of the year
2012: MIND research finds that participation in ESDM normalizes aspects of brain activity in young children with autism
2012: Study by MIND researcher shows higher anxiety associated with poorer functioning in children with 22q11.2 deletion syndrome
2013: MIND Institute joins the Intellectual and Developmental Disabilities Research Center (IDDRC) Network, one of 15 such centers in the U.S, led by Leonard Abbeduto
2012: MIND research Folic acid intake associated with reduced risk of autism, MIND Institute study finds
2013: MIND research indicates that children as young as 6 months of age have excessive cerebrospinal fluid – a possible predictor of autism
2013: Sally Rogers leads an NIH ACE Network Treatment Study to study effects of intervention intensity and delivery style
2014: MIND study shows that training parents of infants at risk for autism in ESDM may prevent later development of autism symptoms
2016: MIND Institute funded as the Northern California Leadership and Education in Neurodevelopmental and Related Disabilities training program under the leadership of Sally Rogers, Aubyn Stahmer and Janice Enriquez
2016: MIND Institute helps launch new paradigm for clinical trials in neurodevelopmental disorders with multi-site NeuroNEXT grant under leadership of Randi Hagerman and Leonard Abbeduto
2017: Research from the Autism Phenome Project indicates that the “big-brained” form of autism is seen in 15% of boys but not in girls and that boys with this type of autism have more difficulties than other autistic boys
2017: MIND research shows that up to 75% of children with autism have improved IQ over time, but 25% do not
2017: The Center for the Development of Phenotype-Based Treatments of Autism Spectrum Disorder, established with an Autism Center of Excellence (ACE) grant from the National Institutes of Health, under the leadership of David Amaral
2017: MIND Institute becomes site of National Fragile X Foundation Biorepository under leadership of Flora Tassone