Extensive Research and a Separate Treatment Clinic

A member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)

The UC Davis MIND Institute in Sacramento, California, has been operating since 2000. As part of the California university system, it conducts extensive research on Fragile X syndrome and numerous other neurodevelopmental disorders. In addition, a separate treatment clinic sees patients who are not part of a research project.

An interdisciplinary staff and faculty are involved with the Fragile X Research and Treatment Program, including specialists in pediatrics, molecular genetics, psychiatry, psychology, neurology, neurobiology, pathology, and social work.

Staff photo of UC Davis MIND Institute.

From left to right: Courtney Clark, MSN, RN, CNL (Clinical Research Coordinator); Ellery Santos, M.D., M.P.H. (Clinical Research Coordinator); Abigail Borbe, B.S., B.A., CCRP (Senior Certified Clinical Research Coordinator); Hazel Biag, M.D. (Staff Research Associate II); Melissa Heys (Assistant Clinical Research Coordinator); Hasan Hasan (visiting international scholar); Dr. Randi Hagerman, MD (Medical Director); Andrea Schneider, PhD. (Licensed Psychologist); Aminath Fazna (visiting international scholar); Lisa Makhoul (Clinical Research Coordinator). Not pictured: David Hessl (Clinical Professor, Department of Psychiatry and Behavioral Sciences, School of Medicine).

 

Meet the Team

Randi J. Hagerman

Dr. Randi Hagerman, MD
Medical Director

Randi is a developmental and behavioral pediatrician, a distinguished professor of pediatrics, and the medical director of the MIND Institute at UC Davis.

She is internationally recognized as both a clinician and researcher in the Fragile X field. Randi received her doctorate from Stanford University, where she also carried out her pediatric residency. She completed a fellowship in learning and disabilities and ambulatory pediatrics at UC San Diego, then led the Department of Pediatrics Section of Developmental Pediatrics for 20 years.

Randi co-founded the National Fragile X Foundation in 1984. In 2000, Randi joined the MIND Institute. There, she and her team discovered the Fragile X-associated tremor/ataxia syndrome (FXTAS). Hagerman’s research involves genotype-phenotype correlations in Fragile X and she collaborates on this research with her husband, Paul Hagerman.

Randi has written over 400 peer-reviewed articles and numerous book chapters on neurodevelopmental disorders, as well as edited several books on Fragile X including a 2020 book edited by Paul J. Hagerman and Randi J. Hagerman titled Fragile X Syndrome and Premutation Disorders: New Developments and Treatments.

Randi has received numerous awards for her research including the Jerrett Cole Award from the National Fragile X Foundation for unselfish dedication in working with children and adults with FXS, the Bonfils-Stanton Foundation Award for Science including Medicine, the IASSID Distinguished Achievement Award for Scientific Literature, the 2005 and 2014 Distinguished Scholarly Public Service Award from UC Davis. In 2004, to honor both Randi and Paul Hagerman in recognition of their work in FXTAS, the National Fragile X Foundation established the Randi J. Hagerman Summer Scholars Award, which recognizes research accomplishments in the field of FXTAS and is given at the biennial International Fragile X Conference.

In 2008, the National Fragile X Foundation again honored Randi with a Lifetime Achievement Award. In 2014 she received the C Anderson Aldrich Award for Outstanding Career Achievement from the AAP; in 2014 the International Sisley-Jerome Lejeune Award in France, and 2017 the Emil M. Mrak International Award from the Cal Aggie Alumni Association.

Randi has worked internationally to establish Fragile X clinical programs and research programs throughout the world. She is currently carrying out multiple targeted treatment trials in FXS.

Courtney Clark, MSN, RN, CNL
Clinical Research Coordinator

Courtney is a Clinical Research Coordinator who joined the Fragile X Research and Treatment Program in 2019. Having a twin brother with Fragile X syndrome and a grandfather with Fragile X-associated tremor/ataxia syndrome (FXTAS) inspired her passion for working with those affected by Fragile X. Courtney graduated from UC Davis in 2020 with degrees in neurobiology and Spanish and obtained a master’s degree in nursing from the University of San Francisco. Courtney is thrilled to be a part of a team that serves patients and their families just like hers.

Ellery Santos, MD, MPH
Clinical Research Coordinator

Ellery joined the Fragile X Research and Treatment program in 2018 administering neurocognitive assessments and coordinating research study visits. Ellery graduated from UC Davis in 2004 with a degree in biological sciences, obtained a master’s degree in public health from Touro University, and a medical degree from St. George’s University, West Indies. His research has focused on Fragile X-associated tremor/ataxia syndrome (FXTAS) and following those affected with FXTAS over time.

Abigail Borbe, BS, BA, CCRP
Senior Certified Clinical Research Coordinator

Abigail is a senior clinical research coordinator supporting the Hagerman team and Genomic Medicine. She earned a bachelor’s in marine coastal sciences and one in sociology from the University of California, Davis. She has worked for the MIND Institute since 2016 and has been driven by a need to enrich the lives of research participants by providing them with all the tools and resources they need to make a difference in the world. She is a certified clinical research professional (CCRP) through the Society of Clinical Research Associates.

Hazel Biag, MD
Staff Research Associate II

Hazel administers neurocognitive assessments for several clinical trials and research studies focusing on Fragile X syndrome and Fragile X-associated tremor/ataxia syndrome (FXTAS). Hazel graduated from the University of California, San Diego (UCSD) with a bachelor’s in human biology and went on to receive her medical degree from the University of the East, Ramon Magsaysay (UERM). In the future, Hazel plans to further her medical training by pursuing a residency in general pediatrics and to further subspecialize in developmental and behavioral pediatrics.

Melissa Heys
Assistant Clinical Research Coordinator

Hasan Hasan
Visiting International Scholar

Andrea Schneider, PhD
Licensed Psychologist

Aminath Fazna
Visiting International Scholar

Lisa Makhoul
Clinical Research Coordinator

Lisa has been working with professor Paul Hagerman since 2001 and joined MIND Institute medical director, Randi Hagerman, in 2012.

Lisa plays a vital role as a connection between the faculty and their departments of biochemistry & molecular medicine and pediatrics, as well as the MIND Institute, School of Medicine, and others. Her main focus is to provide support for their research programs, both in basic and clinical fields. As a clinical research coordinator, she handles various responsibilities, including communicating with participants for the Fragile X tissue repository and doing regulatory work for different clinical trials and research studies at the MIND Institute. Additionally, she takes charge of several administrative tasks, such as coordinating and submitting grant proposals, hiring staff for studies, collaborating with finance teams, and editing.

David Hessl

David Hessl, PhD (not shown)
Clinical Professor, Department of Psychiatry and Behavioral Sciences, School of Medicine

David is a licensed psychologist. His clinical interests involve cognitive, emotional, and behavioral evaluation of children, adolescents, and adults with neurodevelopmental disorders including Fragile X syndrome and autism. David is currently the director of the Translational Psychophysiology and Assessment Laboratory (T-PAL). His research focuses primarily on genetic, brain, environmental, and neuroendocrine factors affecting cognition and behavior in individuals with Fragile X-associated disorders.

One important focus of the work in T-PAL is to develop and evaluate novel behavioral, cognitive, and psychophysiological outcome measures of individuals with neurodevelopmental disabilities. Other recent studies have been aimed at improving aberrant behavior and cognitive measurements in individuals with Fragile X syndrome and other neurodevelopmental disorders.

A second focus of Dr. Hessl’s work is the study of Fragile X premutation carriers. David co-directs an NIMH-funded project examining the trajectory of changes over time in brain structure, neuropsychology, and neurological/motor functioning in these FMR1 premutation carriers.

David earned his doctorate in clinical psychology from the University of Washington. He went on to a clinical internship at the Department of Psychiatry and Behavioral Sciences and the Lucile Packard Children’s Hospital at Stanford University. He also completed a MacArthur postdoctoral fellowship in psychophysiology at the Institute of Human Development at UC Berkeley. His training continued at the Behavioral Neurogenetics Research Center at Stanford where he began his work on gene-brain-behavior studies in Fragile X syndrome with Allan Reiss, MD. He obtained an NIMH Career Development Award to examine the association between anxiety and autism symptoms in children with Fragile X syndrome and the physiology underlying social anxiety problems such as gaze avoidance in these individuals.

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