The Fragile X Clinic and Research Program at Rush University Medical Center

The Fragile X Clinic and Research Program at Rush University Medical Center in Chicago is a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC).

The Team

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 the development of outcome measures and 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), the relationship of FMR1 genotype and FMRP to phenotypes (clinical characteristics), and the optimization of genetic testing methods. Dr. Berry-Kravis is currently the primary investigator 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 who had special needs, which eventually drew her to the Fragile X world. Angel is a licensed clinical social worker and holds a master’s in social work and in human and community development. She enjoys spending time with her two young children, learning, 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’s degree in psychology. Previously, she spent her summers as an inclusion companion with the Northern Suburban Special Recreation Association, which sparked a passion for working with kids with disabilities. She enjoys spoiling her border collie pup, spending time outdoors, and watching movies and new shows.

Services

The clinic provides personalized care and evaluation of Fragile X syndrome, including:

• Medical assessments of associated neurological issues, including seizures.
• Treatment to manage symptoms, such as medications, and referrals for complementary therapies.
• Family counseling and education.