With Dr. Elizabeth Berry-Kravis
Dr. Berry-Kravis joins us to discuss what we’ve learned about the problems that face adults living with Fragile X syndrome from participation in the FORWARD database. She reviews the enrollment of adults in the database, including age ranges and other data we have learned so far about what adults are doing in their community and their living situation.
We also talk about how families of adults can contribute to FORWARD (and now FORWARD-MARCH) and our understanding of adults with FXS by doing a research-only remote visit with a FORWARD clinic to increase the data pool for adults with FXS in the database.
The webinar was recorded live on Monday, December 7, 2020.
about
Elizabeth Berry-Kravis, MD, PhD
Dr. Berry-Kravis is a professor of pediatrics, neurological sciences, and biochemistry at Rush University Medical Center in Chicago. She established the Fragile X Clinic and Research Program in 1991, providing care to over 700 patients with Fragile X syndrome since that time. Her research has included studies of medical issues, epilepsy and psychopharmacology in FXS, neurological problems in FXTAS, and in particular, translational work in FXS including outcome measures and biomarkers, natural history, newborn screening, and clinical trials of new targeted treatments in FXS.
Dr. Berry-Kravis’s laboratory studies the relationship between FMRP and clinical function and methods for optimizing genetic testing in Fragile X-related disorders (FXD). In the past 18 years, she’s been the site or national principal investigator on 24 clinical trials in FXS and numerous NIH- and CDC-funded projects on FXS. She is on the NFXF Scientific and Clinical Advisory Committee and is chair of the Clinical Committee of the FXCRC. She received the Jarrett Cole Award for clinical work in FXS in 2002, the Hagerman Award for excellence in FXTAS research in 2004, the FRAXA Champion Award in 2011, the NFXF William and Enid Rosen Research Award in 2014, the March of Dimes Jonas Salk Research Award in 2015, the American Academy of Neurology Sidney Carter Award in Child Neurology in 2016, and the John Merck Fund Sparkplug Award in 2016, all for work in FXS.