About the Presenters
These are just some of the people you’ll hear from in this video.
Randi J. Hagerman
Developmental pediatrician Randi J. Hagerman, MD, FAAP, is a highly regarded professional within the Fragile X community. She co-founded the National Fragile X Foundation in 1984 and served on the board for 25 years. In 2009, she decided it was time to step aside and let others bring their expertise to the board, though she continues to help guide the foundation to this day.
There is no aspect of the NFXF that Randi has not helped shape. Her strength as both a clinician and researcher has informed the NFXF mission and strategic plan. She and her husband, Dr. Paul Hagerman, generously support the NFXF mission. While Randi is no longer a board member, she is active on the NFXF Scientific & Clinical Advisory Committee and the Fragile X Clinical & Research Consortium where she represents the UC Davis Medical Center’s MIND Institute as medical director of the Fragile X Clinic.
Randi continues to be a sought-after speaker and her work has expanded from Fragile X syndrome to all Fragile X-associated disorders. Randi is continually on the go as an international spokesperson for Fragile X. Fortunately, she’s only seconds away by phone when we need to call upon her for her guidance, advice, and wisdom.
Elizabeth Berry-Kravis
Elizabeth Berry-Kravis, MD, PhD, established the Fragile X Clinic and Research Program at Rush University Medical Center in 1992. She studies Fragile X syndrome medical issues, epilepsy, and psychopharmacology and provides care to over 700 patients with FXS. She has been a leader in translational research, including the development of outcome measures and biomarkers, natural history studies, newborn screening, and particularly clinical trials of new targeted treatments.
Dr. Berry-Kravis’s laboratory studies the cellular roles of the Fragile X protein (FMRP), its relationship to phenotypes, and the optimization of genetic testing methods. She is a longstanding member of the NFXF Scientific and Clinical Advisory Committee, and Clinical Trials Committee, and is the principal investigator of the CDC-funded FORWARD-MARCH natural history project for Fragile X.
Dr. Berry-Kravis attended the University of Notre Dame for her undergraduate studies and the University of Chicago for her doctoral degrees (MD and PhD) and training in pediatric neurology.
David Hessl
David Hessl, PhD, is a licensed clinical psychologist and the head psychologist at the Fragile X Research and Treatment Center at UC Davis, where FXTAS (Fragile X-associated tremor/ataxia syndrome) was first discovered and reported in 2001. His clinical interests involve cognitive, emotional, and behavioral evaluation of children, adolescents, and adults with neurodevelopmental disorders, especially those with Fragile X syndrome, autism, ADHD, and learning disabilities. He also has expertise in developmental psychopathology, particularly mood and anxiety disorders, in infants and young children.
He directs the Translational Psychophysiology and Assessment Laboratory (T-PAL) at the MIND Institute to investigate the emotional psychophysiology of children with neurodevelopmental disorders, and to develop novel outcome measures for clinical trials. His work currently concentrates on autism, Fragile X syndrome, Down syndrome, and Fragile X premutation carriers, who are at risk for neurodegenerative disease.
He received his PhD in Child Clinical Psychology from the University of Washington in 1997, which included a clinical internship at Stanford University, and received postdoctoral fellowship training at the UC Berkeley Institute of Human Development during 1997-1998.
Dr. Hessl’s career has focused on Fragile X-associated disorders since 1998, having published 114 peer-reviewed journal articles on these topics to date. Dr. Hessl also serves on the National Fragile X Foundation’s Clinical Trials Committee.
Linda Sorensen
Linda has been a member of the NFXF team since 2004, including as executive director. She has over 25 years of experience in non-profit programs, operations management, and board and volunteer development. She earned a bachelor’s degree in psychology and a master’s in adult education and organizational development.
Jayne Dixon Weber
Jayne served as the NFXF director of community education (and other positions over the years) from 2007 to 2023. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.
