The Fragile X Clinic at Rush University Medical Center in Chicago, Illinois
A member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Elizabeth Berry-Kravis, MD Ph.D. started working on fragile X syndrome during her fellowship in 1988, working on a project that ultimately showed that cyclic AMP signaling is reduced in fragile X syndrome. From meeting families during this project and listening to their need for a fragile X clinic, she started the Fragile X Clinic and Research Program at University of Chicago in 1991 and moved the program to Rush when she moved there in 1992. Since that time the clinic has grown into the second largest clinic in the world, providing clinical care to over 800 patients with fragile X syndrome and enrolling over 350 fragile X patients in clinical trials in the past 20 years. The clinic at Rush has been involved in studies of medical issues, epilepsy and psychopharmacology in FXS, and the Rush program has been a leader in translational research in FXS including development of outcome measures/biomarkers, natural history studies, newborn screening, and particularly clinical trials of new targeted treatments. The laboratory at Rush run by Dr. Berry-Kravis studies cellular roles of fragile X messenger ribonucleoprotein (FMRP), relationship of FMR1 genotype and FMRP to phenotypes (clinical characteristics), and optimization of genetic testing methods. Dr. Berry-Kravis is currently the PI of the FORWARD-MARCH natural history study in fragile X syndrome.
Angel Wang joined the Rush FXS team in 2017. Previously she worked as a coordinator in Early Intervention in the Chicago area. She worked with many families with young children that had special needs, which eventually drew her to the Fragile X world. Angel is a licensed clinical social worker and holds dual Masters in social work and human and community development. She enjoys spending time with her two young children, learning, and trying new foods, and planning her next national park adventure.
Stella Boeckman is the newest addition to the Rush FXS team, joining in August of 2022. Stella recently graduated from Denison University with a Bachelor of Arts in psychology. Previously, she spent her summers as an Inclusion Companion with the Northern Suburban Special Recreation Association, which sparked a passion in working with kids with disabilities. She enjoys spoiling her Border Collie pup, spending time outdoors, and watching movies and new shows.
The clinic provides personalized care and evaluation of Fragile X syndrome, including the following:
- Medical assessments of associated neurological issues (e.g., seizures)
- Treatment to manage symptoms (e.g., medications, referrals for complementary therapies)
- Family counseling and education